Discussion 6205 : Psychosocial Aspects of Cancer

Cancer is often synonymous with fear, uncertainty, and death. A diagnosis of cancer begins a long journey that affects physical health, mental well-being, and relationships with loved ones. Although cancer care today often provides advanced medical treatment, psychosocial issues may not be adequately addressed (Artherholt & Fann, 2012). This failure may compromise the effectiveness of overall cancer management.

Oncology social workers play an integral role in cancer care in multiple settings. It is common for oncology social workers to engage in individual, family, and group intervention. In addition to providing direct patient care, oncology social workers provide valuable public health interventions, such as health education programs and policymaking.

To prepare for this Discussion:

Review this week’s resources. Select one of the many different types of cancer and think about the overall impact of the disease. Consider the psychosocial effects of cancer. How might cancer affect the health and well-being of an individual and caregivers?

Post an explanation of how this type of cancer might affect the health and well-being of the patient and caregivers. Explain the psychosocial effects of cancer on the patient and caregivers. Explain how psychosocial factors might impact a treatment care plan and the management of the disease. Finally, explain how you might address the psychosocial needs of a cancer patient and caregiver.

Be sure to support your postings and responses with specific references to the resources and the current literature using appropriate APA format and style.

Read a selection of your colleagues’ postings.

Expand on your post regarding the psychosocial effects of cancer on patients and caregivers by providing a different perspective.
Suggest different ways you might address the psychosocial needs of a cancer patient.

N A S W S t a n d a r d s f o r

Social Work
Practice

i n H e a l t h C a r e S e t t i n g s

N A T I O N A L A S S O C I A T I O N O F S O C I A L W O R K E R S

N A S W S t a n d a r d s f o r

Social Work
Practice
i n H e a l t h C a r e S e t t i n g s

National Association of Social Workers

Darrell P. Wheeler, PhD, ACSW, MPH

President

Angelo McClain, PhD, LICSW

Chief Executive Officer

Health Care Standards Expert Panel

Lisa E. Cox, PhD, LCSW, MSW

Terrie Fritz, LCSW

Virna Little, PsyD, LCSW-R

Shirley Otis-Green, MSW, ACSW, LCSW

Anthony Yamamoto, LCSW

NASW Staff

Stacy Collins, MSW

Contents

Introduction

Goals

Definitions

Guiding Principles

16 Standard 1. Ethics and Values

17 Standard 2. Qualifications

18 Standard 3. Knowledge

Standard 4. Cultural and Linguistic Competence

24 Standard 5. Screening and Assessment

Standard 6. Care Planning and Intervention

29 Standard 7. Advocacy

31 Standard 8. Interdisciplinary and Interorganizational

Collaboration

33 Standard 9. Practice Evaluation and Quality

Improvement

Standard 10. Record Keeping and Confidentiality

37 Standard 11. Workload Sustainability

39 Standard 12. Professional Development

Standard 13. Supervision and Leadership

References

45 Acknowledgments

Introduction

Since the early 20th century, social work has
been an integral component of the U.S. health
care system, and the profession continues to
play a leadership role in the psychosocial
aspects of health care. Today, social workers
are present in settings across the health care
continuum, including prevention and public
health, primary and acute care, specialty care,
rehabilitation, home health, long-term care,
and hospice. Professional social workers
provide services to individuals and families
throughout the life span, addressing the full
range of biopsychosocial–spiritual and
environmental issues that affect well-being.
Social work’s strengths-based, person-in-
environment perspective provides the
contextual focus necessary for client- and
family-centered care and is unique among
the health professions.

A hallmark of social work’s commitment to
health and well-being is the profession’s
continued focus on the issue of health care
inequality in the United States. People living
in poverty and communities of color continue
to experience disproportionately higher rates
of acute and chronic illness, due to unequal
access to

health care

services, lack of health
insurance coverage, poverty, discrimination,
and other social determinants of health. Social
workers recognize that reducing health
disparities can only be accomplished by
addressing the biopsychosocial–spiritual needs
of individuals and families, as well as the
systemic issues that contribute to poor
health outcomes.

The Evolving U.S. Health Care System

The U.S. health care system is in an era of
unprecedented change. In recent years, the
nation has witnessed continuing high rates of
uninsurance (13 percent of the U.S.
population, or 42 million people, were
uninsured in 2013 [U.S. Census Bureau,
2014]), inadequate coverage, escalating health
care costs, erosion of employer-based health
insurance, and increasing demand for health
care services as the baby boom generation
enters retirement. The Patient Protection and
Affordable Care Act (ACA) (2010) was
designed to address these issues. The goal of
the ACA is to expand access to affordable and
comprehensive health coverage, improve
patient outcomes, and increase the efficiency
and cost-effectiveness of the health care
delivery system. The ACA invests heavily in
care delivery models that promote
coordination of acute and postacute care and
greater integration of primary and behavioral
health services.

Challenges for the Profession

Their long-standing role in the health system
notwithstanding, social workers practicing in
health care settings today face significant
challenges. Ongoing changes in the financing
and delivery of health care and a shortage of
social work effectiveness data have contributed
to the reduction of social work services in
certain health care settings. Increasingly,
health care social workers are supervised by
individuals without social work degrees, and
tasks previously performed by social workers
are often assigned to other personnel,
including nurses, paraprofessionals, and
volunteers, in an effort to reduce costs.

Opportunities for Social Work in the ACA Era

Despite these challenges, health care social
work is poised to experience a resurgence in
the ACA era. With its emphasis on the “triple
aim”—improving the patient experience of
care (including quality and satisfaction),
improving the health of populations, and
reducing the per capita cost of health care
(Institute for Healthcare Improvement,
2014)—the ACA strengthens social work’s
traditional role in health care and offers new
opportunities for the profession.

The ACA promotes care delivery models, such
as the patient-centered medical home
(PCMH) and accountable care organization
(ACO), which are designed to improve health
outcomes and control health care costs. To
succeed, these models will rely on social
workers skilled and competent in health care
navigation, behavioral and mental health
integration, chronic care management, and
care coordination, among other skills. The
aging of the population will necessitate a need
for social workers skilled in transitioning
patients between different settings and levels
of care and managing complex discharges.

The anticipated influx of patients into the
health care system resulting from the ACA
insurance coverage expansion will increase the
need for social workers who are educated and
trained in working with diverse populations
and with clients who have challenging
physical, behavioral, and mental health needs.
Greater emphasis on community-based care
will require social workers skilled in reducing
nonmedical barriers to health care access. As
important, expanded social work involvement

in these roles and settings presents an
opportunity to advance the evidence base for
the profession.

Prevention and public health, traditional social
work roles, have gained renewed importance
under the ACA. With its ecological viewpoint,
the social work profession is well-positioned to
take a leadership role in new ACA prevention
initiatives, including workplace wellness, home
visiting, and smoking cessation programs. Social
workers are also well positioned to participate
in macro-level prevention efforts, such as policy
change to reduce obesity, which can improve
population outcomes more efficiently than
individual-actions at the clinical care level.
Furthermore, new research fields, particularly
patient-centered outcomes research and
community-based participatory research, offer an
opportunity for social workers to contribute to
the prevention and public health research base.

Purpose of the Standards for Social Work
Practice in Health Care Settings

These standards articulate the necessary
knowledge and skills health care social workers
should possess to deliver competent and ethical
services in today’s health care environment;
provide benchmarks for quality social work
practice for use by health care employers; and
assist policymakers, other health professionals,
and the public in understanding the role of
professional social workers in health care
settings. These standards are intended to
guide social work practice and may be applied
differently, as appropriate, to different health
care settings.

Goals

The specific goals of the standards are to

� Ensure that social work practice in health
care settings is guided by the NASW Code
of Ethics (NASW, 2008)

� Enhance the quality of social work services
provided to clients and families in health
care settings

� Advocate for clients’ rights to self-
determination, confidentiality, access to
supportive services and resources, and
appropriate inclusion in decision making
that affects their health and well-being

� Encourage social work participation in the
development, refinement, and integration of
best practices in health care and health care
social work

� Promote social work participation in
systemwide quality improvement and
research efforts within health care
organizations

� Provide a basis for the development of
continuing education materials and
programs related to social work in health
care settings

� Promote social work participation in the
development and refinement of public
policy at the local, state, federal, and tribal
levels to support the well-being of clients,
families, and communities served by the
rapidly evolving U.S. health care system

� Inform policymakers, employers, and the
public about the essential role of social
workers across the health care continuum.

Definitions

Social Worker

Within the United States, a social worker is an
individual who possesses a baccalaureate or
master’s degree in social work from a school or
program accredited by the Council on Social
Work Education. Although all 50 states and
the District of Columbia license or certify
social workers, licensure and certification laws
vary by state. Each social worker should be
licensed or certified, as applicable and required,
at the level appropriate to her or his scope of
practice in the practitioner’s jurisdiction(s).

Client

Client refers to the “individual, group, family,
or community that seeks or is provided with
professional services” (Barker, 2013, p. 73).
For purposes of these standards, the term
“client” refers to an individual. The term
“patient” is more commonly used by social
workers employed in health care settings.

Biopsychosocial–Spiritual Perspective

A biopsychosocial–spiritual perspective
recognizes the importance of whole person
care and takes into account a client’s physical
or medical condition; emotional or
psychological state; socioeconomic,
sociocultural, and sociopolitical status; and
spiritual needs and concerns.

Bioethics

Bioethics is “the analysis and study of legal,
moral, social, and ethical considerations
involving the biological and medical sciences”
(Barker, 2013, p. 41).

Case Management

Case management is a collaborative process to
plan, seek, advocate for, and monitor services,
resources, and supports on behalf of a client.
Case management enables a health care social
worker to serve clients who may require the
services of various health care providers and
facilities, community-based organizations,
social services agencies, and other programs.
Case management limits problems arising
from fragmentation of services, staff turnover,
and inadequate coordination among providers.
“Care coordination,” “care management,” and
“patient navigation” are sometimes used
interchangeably with “case management”
(Barker, 2013).

Cultural Competence

Cultural competence is “the process by which
individuals and systems respond respectfully and
effectively to people of all cultures, languages,
classes, races, ethnic backgrounds, religions,
and other diversity factors [including, but not
limited to, sexual orientation; gender, gender
expression, and gender identity; and family
status] in a manner that recognizes, affirms,
and values the worth of individuals, families,
and communities and protects and preserves
the dignity of each” (NASW, 2007, pp. 12–13).

Health Disparities

Health disparities are preventable differences
in the incidence, prevalence, mortality, and
disease burden that are closely linked with
social, economic, and environmental
disadvantage. Health disparities adversely affect
groups of people who have systematically
experienced greater obstacles to health based
on their race or ethnicity; religion;

socioeconomic status; sexual orientation;
gender, gender expression, and gender
identity; age; mental health; cognitive, sensory,
or physical disability; geographic location; or
other characteristics historically linked to
discrimination or exclusion (Centers for
Disease Control and Prevention, n.d.).

Social Determinants of Health

The social determinants of health are factors
that affect a wide range of health and quality-
of-life outcomes and are responsible for most
health disparities. These factors include income,
housing, education, employment, and access to
health services, among others. Social determinants
of health are shaped by the distribution of
money, power, and resources (Centers for
Disease Control and Prevention, n.d.).

National Standards for Culturally and

Linguistically Appropriate Services in Health

Care (CLAS Standards)

The National Standards for Culturally and
Linguistically Appropriate Services in Health
and Health Care (the CLAS Standards),
developed by the U.S. Department of Health
and Human Services (HHS), are intended to
advance health equity, improve quality, and
help eliminate health care disparities by
providing guidance to health care
organizations for implementing culturally and
linguistically appropriate services (HHS,
Office of Minority Health, 2013).

Patient Protection and Affordable Care Act

(ACA) (2010)

The ACA is a broad-based federal law that
seeks to reform the U.S. health care delivery
system by expanding health insurance

coverage, enhancing quality of care, improving
health outcomes, regulating the health insurance
industry, and reducing health care spending.

Patient-Centered Medical Home (PCMH)

The PCMH is a health care delivery model
accountable for meeting the large majority of a
person’s physical and mental health care needs,
including primary, acute, and chronic care.
Within a PCMH, an individual has an
ongoing relationship with a primary care
provider who directs and coordinates his or
her care across all elements of the broader
health care system, including physician
specialty services, hospitals, home health care,
and community services and supports (Agency
for Healthcare Research and Quality, n.d.-a).

Integrated Care

Integrated care is a health care delivery
approach in which primary care, mental
health, and behavioral health care services are
systematically coordinated and available in one
location (Substance Abuse and Mental Health
Services Administration & HHS, Health
Resources and Services Administration, Center
for Integrated Health Solutions, n.d.).

Chronic Care Model

The chronic care model is a widely used
approach to chronic illness management that
adapts the acute care delivery system to more
appropriately meet the needs of individuals
with chronic illness (Agency for Healthcare
Research and Quality, n.d.-b).

Accountable Care Organization (ACO)

An ACO is a group of physicians, hospitals,
and other health care providers who share

responsibility for providing coordinated care
to patients. Within an ACO, providers are
financially incentivized for meeting specific
quality and utilization benchmarks for a
defined patient population (Centers for
Medicare & Medicaid Services, n.d.).

Evidence-Informed Practice

Evidence-informed practice is practice based
on the best available research, practice
expertise, and available resources.

Guiding Principles

The NASW Standards for Social Work Practice
in Health Care Settings reflect the following
guiding principles of the social work profession:

� Self-determination: Social workers respect
and promote the right of clients to self-
determination and assist clients in their
efforts to identify and clarify their goals.

� Cultural competency and affirmation of the
dignity and worth of all people: Social
workers treat each person in a caring and
respectful fashion. With skills in cultural
awareness and cultural competence, social
workers affirm the worth and dignity of
people of all cultures.

� Person-in-environment framework: Social
workers understand that each individual
experiences a mutually influential
relationship with her or his physical and
social environment and cannot be
understood outside of that context. This
ecological perspective recognizes that
systemic injustice and oppression underlie
many challenges faced by clients.

� Strengths perspective: Rather than focus on
pathology, social workers elicit, support, and
build on the resilience and potential for
growth and development inherent in each
individual.

� Primacy of the client–social worker
relationship: The therapeutic relationship
between the social worker and the client is
integral to helping the client achieve her or
his goals.

� Social justice: At all levels, from local to
global, social workers promote and advocate
for social, economic, political, and cultural
values and institutions that are compatible
with the realization of social justice.

� Importance of social work research: Social
workers promote the value of research as a
means of improving the well-being of
individuals, families, and society;
strengthening the current workforce; and
maintaining the social work profession’s role
in health care settings.

Standards

Standard 1. Ethics and Values

Social workers practicing in health care
settings shall adhere to and promote the ethics
and values of the social work profession, using
the NASW Code of Ethics as a guide to ethical
decision making (NASW, 2015a).

Interpretation

The primary mission of the social work
profession is to enhance human well-being and
help meet the basic human needs, with special
attention to the needs of people and
communities who are vulnerable, oppressed,
or living in poverty. Social workers have an
ethical obligation to address the health care
needs of these groups and advocate for change
to ensure access to quality care.

The profession’s mission is rooted in core
values that have been embraced by social
workers throughout the profession’s history
and highlight social work’s distinct purpose
and perspective. These values—service, social
justice, dignity and worth of the person,
importance of human relationships, compassion,
integrity and competence—constitute the
foundation of social work and underlie the
practice of social work in health care settings.

The NASW Code of Ethics establishes the
ethical responsibilities of all social workers
with respect to their own practice, clients,
colleagues, employees and employing
organizations, the social work profession, and
society. Acceptance of these responsibilities—
which include upholding a client’s right to
privacy and confidentiality and promoting

client self-determination—fosters competent
social work practice in health care settings.

In a health care system characterized by
technological advancement and rapid change
in care delivery and financing of health care
services, ethical dilemmas among and between
clients, families, health care professionals, and
organizations are potentially numerous and
complex. The NASW Code of Ethics and
prevailing clinical bioethics provide a
foundation for social workers to manage such
dilemmas. Health care social workers have the
responsibility to know and comply with local,
state, federal, and tribal legislation,
regulations, and policies, addressing topics
such as guardianship; parental rights; advance
directives; and reporting requirements for
abuse, neglect, exploitation, suicide, and threat
of harm to others.

When an ethical dilemma or conflict occurs,
the health care social worker is expected to
employ available mechanisms, including social
work supervision, peer review, institutional
ethics committees, and external consultation,
to resolve the dilemma.

Standard 2. Qualifications

Social workers practicing in health care
settings shall possess a baccalaureate or
master’s degree in social work from a school or
program accredited by the Council on Social
Work Education, shall comply with the
licensing and certification requirements of the
state(s) or jurisdiction(s) in which she or he
practices, and shall possess the skills and
professional experience necessary to practice
social work in health care settings.

Interpretation

Social work degree programs provide the
fundamental education and training required
for all social work practice specialties. As an
area of specialization within the social work
profession, health care social work requires a
distinct skill set and knowledge base, as
outlined in these standards. Ideally,
prospective health care social workers should
have prior health care–related educational or
employment experience. At a minimum, it is a
health care social worker’s responsibility to

� Acquire and maintain social work licensure
or certification, as available, for the social
worker’s educational level and professional
experience

� Abide by a defined scope of practice, as
required by state law or regulation

� Adhere to supervision requirements
� Pursue ongoing professional development

activities, to acquire the competence
necessary to perform job responsibilities.

A health care social worker whose responsibilities
include the diagnosis of mental and behavioral
health conditions and/or the provision of
psychotherapy must have a master’s degree in
social work and should either be licensed at
the clinical level or, if the licensing jurisdiction
allows, perform clinical tasks under supervision.

Standard 3. Knowledge

Social workers practicing in health care
settings shall acquire and maintain a working
knowledge of current theory and evidence-
informed practice, and shall use such
information to ensure the quality of social
work practice.

Interpretation

As health care professionals, social workers
require specialized knowledge and skills. This
knowledge and skill base can be obtained
through multiple approaches, including
coursework and field practice in a social work
degree program, specialty practice credentials
earned after graduation, health care–related
employment experience, and ongoing
continuing education. Developing a knowledge
and skill base is a cumulative process that
requires a commitment to career-long learning.

Given the growing complexity of services
delivery systems and client needs, even
experienced health care social workers may
encounter situations requiring knowledge and
skills beyond the scope of their usual practice
setting. In such situations, the health care
social worker seeks supervision, consultation,
and continuing professional development, as
described elsewhere in these standards, to ensure
she or he has both the requisite knowledge of
health care delivery systems and the skills to
serve clients effectively. In addition, the social
worker may need to collaborate with health
care and other services providers on behalf of a
client, or refer a client to other social workers
whose expertise is more suitable to the client’s
needs and circumstances.

Knowledge and skills that are essential to social
work practice in health care settings include,
but are not limited to, the following areas:

Physical and mental/behavioral health

� The interplay between the physiological
elements of acute, chronic, and life-limiting
illness and biopsychosocial–spiritual health
and well-being

� Concepts and theories associated with life-
span development, neurobiology, and
behavioral change

� Grief, loss, and bereavement
� Depression, anxiety, and other mental

health conditions
� Addiction and other behavioral health

conditions
� Sexual health
� Concerns related to sexual orientation, gender

identity and expression, and gender roles
� Basic medical terminology
� Knowledge of common health conditions
� Counseling and behavioral change

intervention

Health care delivery system issues

� The health care continuum
� The unique needs of marginalized,

oppressed, and diverse populations
� Health disparities and the social

determinants of health
� Evidence-informed approaches to health

care, including the PCMH, integrated
primary and behavioral health care, ACOs,
and the chronic care model

� New health care policies and delivery
system changes resulting from the ACA

� Basics of health insurance coverage,
including Medicare, Medicaid, the
Children’s Health Insurance Program, and
commercial insurance plans

� Health care system trends, including
ongoing health care infrastructure changes

� Accreditation and regulatory standards
governing

health care settings

� Thorough knowledge of community resources
� Micro-, mezzo-, and macro-level preventive

health care

Roles and responsibilities of social workers in

health care settings

� Understanding of common ethical and legal
issues in social work practice in health care
settings

� Biopsychosocial–spiritual assessment
� Use of the strengths perspective
� Client and family engagement in all aspects

of social work intervention
� Case management/care management/care

coordination/health care navigation
� Discharge and transition planning
� Client concordance with and adherence to

the plan of care
� Advance care planning
� Palliative care, including pain and symptom

management
� Hospice and end-of-life care
� Identification of child/elder/vulnerable adult

abuse, trauma, neglect, and exploitation
� Crisis intervention
� Facilitation of benefits and resource

acquisition to assist clients and families,
including an understanding of related
policies, eligibility requirements, and
financial and legal issues

� Advocacy with other members of the
interdisciplinary team and within the health
care institution to promote clients’ and
families’ decision making and quality of life

� Client, family, interdisciplinary, and
community education

� Family systems issues, including the impact
of health care concerns, illness, and disease
on family relationships; life cycles; and
caregiving roles and support needs

Research and evaluation

� Research and evaluation methodology

� Social work outcome/practice evaluation
approaches

� Opportunities for social work participation
in institutional quality improvement
programs and research projects

� Client and family education regarding
opportunities for clinical trial participation

� Ability to analyze research results and
incorporate findings into practice,
organizational quality improvement
initiatives, and advancement of the social
work profession

Standard 4. Cultural and Linguistic Competence

Social workers practicing in health care
settings shall provide and facilitate access to
culturally and linguistically appropriate
services, consistent with the NASW Standards
and Indicators for Cultural Competence in Social
Work Practice (NASW, 2015b).

Interpretation

The increasing racial, ethnic, and linguistic
diversity of the United States requires health
care social workers to strive continuously for
cultural competence. Recognition and
affirmation of cultural and linguistic diversity
are critical to both therapeutic alliances with
clients and cooperative working relationships
with colleagues. Given the many facets of
culture, every interaction between a health
care social worker and a client is potentially a
cross-cultural exchange, as two individuals are
unlikely to be identical in every aspect of
cultural identity.

The practice of health care social work requires
an understanding of the broad scope of
diversity in the United States. Client diversity

is expressed in many ways, including race,
ethnicity, socioeconomic class, sexual
orientation; gender, gender expression, and
gender identity; religion, age, health and
family status; cognitive, physical, or psychiatric
ability; and sensory differences, preferred
language, immigration status, degree of
acculturation, level of formal education, and
literacy, among others. Health care social
workers must also recognize that cultural self-
awareness is an integral component of cultural
competence. Such awareness entails
understanding how one’s own cultural values,
beliefs, biases, experiences, and perceptions
affect interactions with clients and colleagues.

Health care social workers must acquire a
cross-cultural knowledge base to provide
effective, culturally competent practice. In
particular, social workers must develop and
maintain an understanding of the history,
traditions, rituals, values, family systems, and
communication patterns of major client
groups served, as well as an understanding of
the influence of culture on help-seeking
behaviors and perceptions of health, illness,
health care treatments, disability, caregiving
roles, and death and dying among client/patient
groups served. Social workers should also
recognize how societal oppression and privilege
related to cultural and linguistic diversity (such
as racism, sexism, homophobia, ageism, or
xenophobia) affect clients’ biopsychosocial–
spiritual well-being, access to and use of
supports and services, and health outcomes.

Health care social workers should advocate for
organizational practices and policies that
promote and support cultural diversity among

staff and throughout the health care
organization. These may include hiring and
retention policies that ensure various client
groups are represented among personnel and
institutionwide education and training programs
to develop specialized expertise (such as
bilingual and bicultural skills) among staff.

There is no endpoint in the achievement of
cultural competence; rather, developing and
maintaining cultural competence is a lifelong
process of learning and self-reflection. To
develop and promote cultural competence at
the individual, institutional, or societal level,
social workers should be guided by the NASW
Standards and Indicators for Cultural Competence
in Social Work Practice (NASW, 2015b). HHS’s
National Standards for Culturally and
Linguistically Appropriate Services in Health and
Health Care (HHS, 2013) may also serve as a
guide for social workers.

Standard 5. Screening and Assessment

Social workers practicing in health care
settings shall engage clients and, when
appropriate, members of client support
systems, in screening and assessment, by
gathering information for use in developing
evidence-informed care plans.

Interpretation

Screening for psychosocial issues is now common
in health care settings. Within emergency
departments, clinics, and other points of entry,
individuals are often screened for pain, mental
health disorders, domestic violence, substance
use disorders, self-harm, and distress, among
other concerns. Screening can also occur
throughout a disease trajectory. The presence

of psychosocial screening programs has
become a criterion for institutional
accreditation in certain health care settings.

Early identification of psychosocial issues can
assist health care social work staff in effectively
prioritizing situations that may affect client
safety or indicate a high need for social work
services. Preventive screening results can also
inform a comprehensive client assessment.
Social workers should be trained and
demonstrate competency in the use of
psychosocial screening tools used within their
institutions and organizations. Social workers
should also participate on institutional
committees that implement and monitor
psychosocial screening programs.

Biopsychosocial–spiritual assessment is a
fundamental process of social work practice in
health care settings. The foundation of client
care planning is the comprehensive assessment,
which requires social workers to engage clients
in identifying their needs and strengths and
supporting clients in establishing priorities and
goals. In conducting an assessment, the health
care social worker must use empathy, client-
centered interviewing skills, and methods
appropriate to clients’ capacity. In the
assessment process, social workers may find
standardized instruments helpful in identifying
and responding to client concerns. Such
instruments are viewed as starting points in
the development and refinement of an
individualized, comprehensive assessment.

Assessment is an ongoing activity, not a
onetime event. During the reassessment
process, the social worker and client (and, if

appropriate, members of the client support
system) revisit the needs, assets, and priorities
identified in the initial assessment and discuss
the client’s emerging concerns.

A comprehensive assessment may include the
following:
� Behavioral and mental health status, including

current level of functioning, coping style,
crisis management skills, substance use
history, and risk of suicide or homicide

� Physical and cognitive functioning
� Psychosocial–spiritual well-being, including

ability to fulfill social roles
� Cultural values, beliefs, and practices
� Client strengths, protective factors, and

points of resilience
� Employment, educational, or vocational

history, including challenges, goals, and
objectives

� Living arrangements, including suitability
and safety of the home environment

� Family composition, structure, and roles
� Language preferences and proficiency levels
� Degrees of literacy, including health,

behavioral health, and financial literacy
� Risk of abuse, neglect, or exploitation of or

by the client, and underlying causes for such
mistreatment

� Social supports, including formal and
informal support systems

� Need for economic or other psychosocial
resources, supports, and services

� Ability to navigate relevant service systems
(such as educational, employment, health
care, housing, legal, nutritional, social
services, or transportation systems)

� Life-span planning (which may include
advance care planning, anticipation of

caregiving responsibilities, permanency
planning for minor children, retirement
planning, or other domains)

� Client’s perceptions of changes needed to
improve her or his situation

� Identification of barriers to adherence to the
plan of care.

Assessment processes should, to the extent
possible, be customized for vulnerable
populations, including children, people with
severe and persistent mental illness,
immigrants and refugees, people with
substance use disorders, survivors of violence
or trauma, people who are homeless, and
people with physical or cognitive disabilities.

Standard 6. Care Planning and Intervention

Social workers practicing in health care
settings shall develop and implement
evidence-informed care plans that promote
client well-being and ensure a client- and
family-centered continuum of care.

Interpretation

Care plans outline the necessary steps—
identified collaboratively by the social worker,
the client, the client support system (at the
competent client’s discretion), and other
members of the health care team—to achieve
the goals and objectives identified in a
comprehensive biopsychosocial–spiritual
assessment. Implementing care plans with
individuals across the life span, and with
different health conditions and cultures,
requires health care social workers to tailor
practice techniques to best meet client needs.

Case management—a historical function of
the social work profession—remains an
efficient and cost-effective approach to care
plan implementation that can optimize client
functioning. Health care institutions have
multiple titles for social workers who engage
in case management functions. “Case manager,”
“care manager,” “care transition manager,”
“discharge planner,” “patient navigator,” and
“care coordinator” describe work that resembles,
to varying degrees, case management. Through
case management, health care social workers
engage clients in the collaborative process of
identifying, planning, accessing, coordinating,
monitoring, evaluating, and advocating for
resources, supports, and services.

Clinical social workers who are employed or
contracted to provide mental or behavioral
health services should use evidence-informed
treatment interventions with clients. These
interventions may include cognitive–behavioral
therapy, motivational interviewing, chronic
disease self-management, psychoeducational
services, brief intervention/brief therapy, and
trauma-informed care, among other modalities.

When implementing care plans, social workers
should strive to
� Develop and maintain a therapeutic

relationship with the client and the client
support system

� Engage the client in a culturally responsive
manner and with a strengths-based approach
that facilitates, supports, and recognizes the
client’s capabilities, resources, and resiliency

� Apply evidence-informed practice models to
facilitate the client’s accomplishment of
goals and objectives

� Facilitate access to a range of financial,
housing, health, mental and behavioral
health, education, and community resources

� Ensure care continuity through safe
discharge, appropriate transition between
different levels of care, and client follow-up

� Seek consultation from health care team
members and social work supervisors, as
necessary, to facilitate plan implementation

� Safeguard the privacy and confidentiality of
client information.

Standard 7. Advocacy

Social workers practicing in health care settings
shall advocate for the needs and interests of
clients and client support systems and promote
system-level change to improve outcomes,
access to care, and delivery of services,
particularly for marginalized, medically
complex, or disadvantaged populations.

Interpretation

Social workers have a responsibility to advocate
for the needs and interests of clients and client
support systems. Social workers in health care
settings serve as client advocates by promoting
client access to health care, identifying and
removing barriers to services delivery, and
helping clients navigate between and among
complex health and social services systems.
Social workers also strive to promote clients’
self-advocacy skills and to enhance the
capacity of communities to support clients’
biopsychosocial–spiritual quality of life.

To strengthen services and enhance client
outcomes, social workers should promote and
participate in quality improvement initiatives

within their health care institutions. Quality
improvement programs offer an opportunity for
health social workers to advocate for the
expansion of the profession’s role in health care
settings. These programs can also build social
work capacity for institutional leadership roles.

Social workers should play an active role in
community education efforts, speaking on
behalf of their health care institutions about
disease prevention, health promotion, access
to care, and other timely health-related topics.

Health social workers must understand the
concept of health disparities—the
disproportionate burden of preventable disease,
death, and disability experienced by many
minority communities, people living in poverty,
and other disenfranchised groups. Health
disparities are closely linked with the social
determinants of health, that is, the social,
economic, and environmental conditions that
strongly influence heath status. Population
health requires minimizing health disparities
and promoting health equity among all
socioeconomic groups. Social workers have an
ethical obligation to address health disparities
by educating colleagues, the media, allied
professionals, decision makers and policymakers,
and other stakeholders on the impact of health
disparities and unequal access to health
services and by engaging in social and political
action to reduce health disparities.

Standard 8. Interdisciplinary and

Interorganizational Collaboration

Social workers practicing in health care
settings shall promote collaboration among
health care team members, other colleagues,
and organizations to support, enhance, and
deliver effective services to clients and client
support systems.

Interpretation

Collaboration between the social worker and
the client is the foundation of health care social
work practice. Therefore, the client (and when
appropriate members of the client support
system) is at the center of the health care team.
Within health care settings, multiple practitioners
are often involved in a client’s care, making
teamwork and collaboration essential.
Teamwork and good communication among
health care practitioners can improve health
care delivery, resulting in better client outcomes.

Social workers should be competent in different
teamwork models that are common in health
care settings, including multidisciplinary models
(different disciplines working together, each
drawing on their own knowledge);
interdisciplinary models (different disciplines
working in a coordinated fashion toward a
common goal for the client); and transdisciplinary
models (a team of health care professionals
cooperating across disciplines to improve patient
care through practice or research). Working
effectively as members of a health care team
also requires health care professionals, including
social workers, to engage in interdisciplinary
education programs. These efforts allow team
members to learn about each other’s
contributions to improving client outcomes.

The health care social worker plays an integral
role in fostering, maintaining, and
strengthening collaborative partnerships on
behalf of clients, families, and communities
and should demonstrate the ability to
� Articulate and fulfill the mission and functions

of the employing health care organization
� Differentiate social work perspectives,

values, and interventions from those of
other health care disciplines

� Ensure that the social work roles and
responsibilities are clearly delineated and
communicated to other members of the team

� Provide psychosocial insight, guidance, and
recommendations to other members of the
health care team regarding client and family
well-being

� Describe the roles of other health care
practitioners and organizations involved in
supporting the client

� Ensure that the roles and responsibilities of
each collaborating organization are clearly
delineated and communicated

� Communicate effectively with all
professionals, paraprofessionals, and
volunteers involved in supporting social
work clientele in the health care setting

� Advocate for the client’s or, when
appropriate, the client support system’s
integral role in team communications and
care planning, delivery, and monitoring

� Communicate the client’s information in a
respectful and objective manner while
protecting the client’s confidentiality and
privacy

� Foster an organizational culture that
promotes effective, coordinated services for
clients, families, and communities

� Develop and maintain partnerships across

disciplines and organizations to enhance
access to and continuity of care for social
work clientele

� Share and, where appropriate, team
leadership in planning and improving
services to clients.

Standard 9. Practice Evaluation and Quality

Improvement

Social workers practicing in health care settings
shall participate in ongoing formal evaluation
of their practice to advance client health and
well-being, assess the appropriateness and
effectiveness of services and supports, ensure
competence, and strengthen practice.

Interpretation

Evaluation of social work practice is an essential
component of social work services delivery.
Evaluation entails soliciting and integrating
internal and external feedback on the process
and outcomes of social work practice in health
care settings. Ongoing formal practice evaluation
is vital to ensure that services provided to
clients are appropriate, effective, and timely in
helping clients achieve their goals. Moreover,
practice evaluation outcomes are increasingly
used for position justification, performance
review, practice standards, goal setting, risk
management, utilization review, and research
efforts. Social work evaluation methods may
include peer review, self-evaluation,
supervision, and other research methods.

Evaluation practices may include the following
activities:
� Application of appropriate tools such as

clinical indicators, practice guidelines,
satisfaction surveys, and standardized

performance assessments to evaluate client
progress and satisfaction

� Solicitation and incorporation of feedback
from clients regarding the extent to which
social work services have helped them
identify and achieve their goals

� Solicitation and incorporation of feedback
from the interdisciplinary treatment team
regarding the effectiveness of social work
services and opportunities for increased or
improved interdisciplinary collaboration

� Measurement of both process and outcome
objectives

� Practitioner, program, and organizational
self-evaluation

� Participation in qualitative and quantitative
social work research to strengthen the
evidence base for social work services in
health care settings

� Dissemination of evaluative data to clients,
payers, and other health care providers on
request, and with consideration for clients’
rights to privacy and confidentiality

� Use of internal and external practice,
program, or organizational evaluators

� Application of evaluation and research
findings, including evidence-informed
practice, to facilitate client goal setting and
to enhance practice and program quality
and outcomes

� Use of peer review, supervision, and
consultation with other social workers and
across disciplines.

Standard 10. Record Keeping and Confidentiality

Social workers practicing in health care settings
shall maintain timely documentation that
includes pertinent information regarding client
assessment, and intervention, and outcomes,

and shall safeguard the privacy and
confidentiality of client information.

Interpretation

Clear, concise, and ongoing documentation of
social work services in health care settings
facilitates effective communication with other
health care providers and organizations,
thereby promoting continuity of services.
Documentation serves as a foundation for care
planning and for practice and program
evaluation. In addition, professional
documentation is often required for services
reimbursement, utilization or legal review, and
demonstration of organizational accountability
to payers or funding sources. The purpose of
documentation is to foster strong working
relationships with, and services for, clients in
health care settings.

Documentation of social work services should
be recorded on paper or electronically and
must be prepared, secured, and disclosed in
accordance with regulatory, legislative,
statutory, and organizational requirements.

High-quality social work documentation includes
� The client’s identifying information
� Screening results
� Initial and subsequent biopsychosocial–

spiritual assessments
� A client care plan, with procedures for

monitoring and quantifying progress toward
accomplishment of client goals, services
provided, and other information about plan
implementation

� Referrals to or from other practitioners,
organizations, or resources, including
rationale for referrals, and other

collaboration on behalf of the client
� Dates, times, and descriptions of contact with

the client, the client’s support system, and
other health care providers or organizations

� Quantifiable service outcomes
� Supervision or consultation sought or

provided to enhance social work services
� Transfer or termination of services
� When indicated, written permission from

the client to release and obtain information
� Documentation of compliance with

confidentiality and privacy rights and
responsibilities

� Accounting of receipts and disbursements
related to client services provision.

Health care social workers must safeguard all
client information and adhere strictly to local,
state, federal, and tribal requirements
regarding confidentiality. They should inform
clients both verbally and in writing of
confidentiality requirements and limitations
before services are initiated. This is necessary
to ensure that the client has the information
needed to provide informed consent and to
facilitate the client’s understanding of how the
social worker discloses client information to
other health care professionals and how the
health care organization responds to external
requests for confidential information.

Technology, including e-mail, text messaging,
videoconferences, and other mechanisms, may
increase the efficiency of social work services,
but must always be used in a professionally
appropriate manner that ensures client
confidentiality in all venues. Disclosure of
identifying information should be avoided
whenever possible. In particular, social

workers should refrain from disclosure of
client information on social media.

Health care social workers should be
knowledgeable about the confidentiality
implications of electronic record keeping
specific to health care settings. Social workers
should receive training on and demonstrate
competence in the health care organization’s
electronic medical record (EMR) system and
should demonstrate competency in its use,
including an understanding of the EMR’s
unique confidentiality and privacy implications.
Health care social workers should also be
knowledgeable about the Health Insurance
Portability and Accountability Act of 1996,
and the Health Information Technology for
Economic and Clinical Health Act (2009).

Standard 11. Workload Sustainability

Social workers practicing in health care settings
shall responsibly advocate for workloads and
scope of work that permit efficient and high-
quality social work services delivery.

Interpretation

Health care organizations, social work managers,
and social work staff have joint responsibility
for establishing and maintaining a workload
that allows for adequate and appropriate
interventions and monitoring of services and
outcomes. A workload consists of any social
work function, including direct contact with or
on behalf of clients and administrative, policy,
research, or educational functions performed
in accordance with a health care social work
position. The workload reflects the needs and
goals of the clientele and the health care
organization and may include social work
coverage outside of regular office hours.

A caseload, in contrast, refers to the number of
clients served at a given point in time. Client
caseload size directly affects a social worker’s
capacity to establish relationships with and
provide services to clients. Consequently,
caseload size should allow for meaningful
opportunities for client contact. The number
of clients a health care social worker can serve
effectively is limited by the degree to which
health care organizations serve clients in acute,
high-risk situations or other circumstances
requiring intensive, frequent contact with
clients. The workload also reflects the
demands of the population served.

Multiple factors affect both caseload size and
workload manageability within health care
settings, including but not limited to
� Complexity of client needs, including

patient acuity and requirements for care
transitions and follow-up services

� Availability of institutional, community, and
family resources to meet client needs and goals

� Number of clients the health care
organization serves

� Administrative support and access to
technology.

For maximum effectiveness, the size of the
social work staff reflects the mission of the
health care organization, the scope of the
social work program, and the number and
complexity of clients served. On behalf of
health care social workers and their clientele,
social workers should advocate for and support
research to determine reasonable caseloads
with diverse populations and within different
health care practice settings, to provide
ethical, quality-based services.

Standard 12. Professional Development

Social workers practicing in health care settings
shall assume personal responsibility for their
own continued professional development, in
accordance with the NASW Standards for
Continuing Professional Education (NASW, 2003)
and the licensure or certification requirements
of the state(s) or jurisdiction(s) in which she or
he practices.

Interpretation

Social workers must engage in ongoing
professional development to maintain
competence within their fields of practice.
Professional development activities relevant to
social work practice in health care settings may
include developments in clinical care, research
or technology, health care policy and legislation,
community resources and services, ethics, and
leadership and administration, among other
topics. Numerous opportunities for professional
development exist within NASW, allied
professional organizations, schools of social
work, health care institutions, and organizations
providing services to or on behalf of various
constituencies (such as children, older adults,
or people with disabilities) at the local, state,
national, and international levels.

Employing organizations should encourage
and support social workers’ participation in
professional development activities. This can be
accomplished through organizational sponsorship
of multidisciplinary and social work–specific
continuing education programming; promotion
of supervision and mentorship opportunities
for social workers; and support for social work
involvement in peer review, research,
publication, and volunteer activities. To

advance the field, social workers must take an
active role in opportunities, both within their
employing institutions and within the larger
social work community.

Standard 13. Supervision and Leadership

Social workers practicing in health care
settings shall strive for leadership roles in
educational, supervisory, administrative, and
research efforts within their institutions and
shall mentor others within the social work
profession, to develop and maintain a robust
health care social work workforce.

Interpretation

The purpose of social work supervision in
health care settings is to enhance the professional
skills and knowledge of a supervisee to
increase her or his competence in providing
quality services to clients and families.
Supervision facilitates professional growth and
development and improves clinical outcomes.

Best practice dictates that within health care
settings, social work departments be directed
by a master’s-level social worker with experience
and expertise in health care practice. A licensed
clinical social worker—be it the supervisor or
another individual—should be available to
provide clinical supervision for licensure, in
accordance with state licensing laws.
Qualifications for social work supervisors
should be consistent with the Best Practice
Standards in Social Work Supervision (NASW &
Association of Social Work Boards, 2013).

Supervisors play a key role in the professional
development of their supervisees. The actions
and advice of the supervisor are keenly

observed by supervisees and, consequently,
influence much of the supervisees’ thinking and
behavior. Teaching is an important function of
the supervisor, who models the behavior the
supervisees will emulate. Supervisors should
create a supportive educational environment in
which supervisees learn about the health care
systems in which they work and the clients and
communities they serve.

To sustain and nurture the practice of health
care social work, all experienced social workers,
regardless of their supervisory status, should
offer guidance, mentoring, and consultation to
students, interns, and their less experienced
peers. Social workers in senior management
roles should provide mentorship to other social
workers aspiring to leadership positions within
health care settings.

In addition, social workers should play an active
role in all types of clinical research, as well as in
health services and quality improvement research.
Such involvement not only demonstrates the
leadership capability of the social work
profession, but also advances recognition among
interdisciplinary colleagues of the essential
role of biopsychosocial–spiritual intervention
in quality care to clients and families.

In addition, social workers should play an active
role in clinical, health services, and quality
improvement research, to demonstrate the
leadership capability of the social work
profession and to advance recognition among
colleagues in other disciplines of the essential
role of biopsychosocial-spiritual intervention
in quality services to clients and families.

Experienced social workers should promote
relationships with schools of social work in
their states and communities to encourage
interest in health care practice through field
placement arrangements, joint research
initiatives, and collaborative continuing
education activities.

Social workers should initiate and participate
in qualitative and quantitative social work
research to strengthen the evidence base for
social work services in health care settings and
improve the broader health care system.

References

Agency for Healthcare Research and Quality.
(n.d.-a). Patient-centered medical home resource
center. Retrieved from http://pcmh.ahrq.gov/

Agency for Healthcare Research and Quality.
(n.d.-b). Toolkit for implementing the chronic care
model in an academic environment. Retrieved
from www.ahrq.gov/professionals/education/
curriculum-tools/chronic caremodel/
chronic3a.html

Barker, R. L. (2013). The social work dictionary
(6th ed.). Washington, DC: NASW Press.

Centers for Disease Control and Prevention.
(n.d.). Social determinants of health. Retrieved
from www.cdc.gov/socialdeterminants/
Definitions.html

Centers for Medicare & Medicaid Services.
(n.d.). Accountable care organizations (ACO).
Retrieved from www.cms.gov/Medicare/
Medicare-Fee-for-Service-Payment/ACO/

Health Information Technology for Economic
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(42 U.S.C. 300jj et seq.; 17901 et seq.)
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Health Insurance Portability and Accountability
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Institute for Healthcare Improvement. (2014).
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National Association of Social Workers.
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National Association of Social Workers.
(2015a). Code of ethics of the National Association
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National Association of Social Workers.
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National Association of Social Workers &
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Patient Protection and Affordable Care Act,
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Substance Abuse and Mental Health Services
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U.S. Census Bureau. (2014). Health insurance
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U.S. Department of Health and Human
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U.S. Department of Health and Human
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appropriate services standards. Retrieved from
www.thinkculturalhealth.hhs.gov/pdfs/
NationalCLASStandards FactSheet

Acknowledgments

NASW gratefully acknowledges the work of
the social work expert panelists for their
contributions to the NASW Standards for Social
Work Practice in Health Care Settings. NASW
also thanks its health care specialty credential
holders, Specialty Practice Section committees
and members, and other members for their
input in the standards development process.

NATIONAL ASSOCIATION

OF SOCIAL WORKERS

750 First Street, NE

Suite 800

Washington, DC 20002-4241

202.408.8600

socialworkers.org

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To cite this article: Erin E. Kent PhD , Carla Parry PhD , Michael J. Montoya PhD , Leonard
S. Sender MD , Rebecca A. Morris MSG, MPH & Hoda Anton-Culver PhD (2012) “You’re too
young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship, Journal of
Psychosocial Oncology, 30:2,

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Journal of Psychosocial Oncology, 30:260–279, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 0734-7332 print / 1540-7586 online
DOI: 10.1080/07347332.2011.644396

“You’re too young for this”: Adolescent
and Young Adults’ Perspectives

on Cancer Survivorship

ERIN E. KENT, PhD
Cancer Prevention Fellowship Program and Office of Cancer Survivorship, National Cancer

Institute, National Institutes of Health, Rockville, MD, and Department of Epidemiology,

University of California–Irvine, Irvine, CA, USA

CARLA PARRY, PhD
Office of Cancer Survivorship, National Cancer Institute, National Institutes of Health,

Rockville, MD, USA

MICHAEL J. MONTOYA, PhD
Department of Anthropology, Department of Chicano/Latino Studies, and Department of

Population Health and Prevention, University of California–Irvine, Irvine, CA, USA

LEONARD S. SENDER, MD
Chao Family Comprehensive Cancer Center, University of California–Irvine, Irvine, CA,

and CHOC Children’s Hospital of Orange County, Orange, CA, USA

REBECCA A. MORRIS, MSG, MPH
CHOC Children’s Hospital of Orange County, Orange, CA, USA

HODA ANTON-CULVER, PhD
Department of Epidemiology and Genetic Epidemiology Research Institute,

University of California–Irvine, Irvine, CA, USA

Adolescent and young adult cancer survivors face unique chal-
lenges not systematically addressed by cancer clinicians. Four fo-
cus groups and two individual interviews were conducted with 19
survivors to profile experiences and identify key concerns for future
interventions. The resultant themes reflect cancer care continuum

The authors would like to acknowledge Janet Alexanian and Rachel Dioso-Villa for
suggestions that greatly improved the manuscript. Work was carried out at the University of
California, Irvine. Support for this work was provided by a University of California Institute
for Mexico and the United States dissertation grant and a Centers for Disease Control and
Prevention R36 Public Health Dissertation Grant (R36DP002012-01) to Erin E. Kent.

Address correspondence to Erin E. Kent, PhD, Cancer Prevention Fellowship, National
Cancer Institute, 6116 Executive Blvd, Suite 404, Rockville, MD 20852. E-mail: erin.kent@
nih.gov

260

Young Adult Cancer Survivor Perspectives 261

challenges (such as delays in diagnosis, problems with adherence),
psychosocial concerns (such as infertility and reproductive con-
cerns, changing social relationships, financial burden), and the
paradox of being diagnosed with cancer as a young adult. Future
intervention development for adolescent and young adult survivors
should involve patient voices at each stage of the research process.

KEYWORDS adolescent and young adult, qualitative research,
focus groups, cancer survivorship

INTRODUCTION

Adolescents and young adult (AYA) cancer survivors have been a historically
understudied research population. Work conducted by the National Cancer
Institute (NCI) and LiveSTRONG has countered this trend by highlighting
the experiences of individuals diagnosed with cancer between ages 15 and
39 (Adolescent and Young Adult Oncology Progress Review Group, 2006),
a diverse range of life stages for whom illness can affect and disrupt de-
velopmental milestones. Likewise, cancer advocacy organizations continue
to push for increased recognition and responsiveness to AYA-specific needs
(Bleyer, 2007). Adolescent and young adult survivors face challenges similar
to those of older and younger survivors, including late effects of cancer and
treatments, anxiety about recurrence, and an increased psychosocial needs
burden as well as difficulties in accessing psychosocial services (Insitute of
Medicine, 2006). However, AYAs also have unique survivorship experiences:
shifts in educational and occupational trajectories, often at critical junctures;
effects on dating, sexuality, and romantic partnerships that can have a last-
ing impact; possible damage to fertility; and constraints on social support
networks (Adolescent and Young Adult Oncology Progress Review Group,
2006; Hall et al., 2011). Feelings of uncertainty that accompany recovery,
along with the recognition of the frailty of life, may influence survivors in
how they manage their lives after cancer (Zebrack & Zeltzer, 2001). The
impact of having to face this uncertainty for a long time and over several
transitional life stages on AYAs, however, is not well understood.

Adolescent and young adult survivors are an understudied population,
and little is known about their unique psychosocial needs. Using qualitative
methods to illuminate survivor viewpoints in research legitimizes a role for
local knowledge from survivors alongside that of health researchers and clin-
icians and allows a forum for a truly patient-centered understanding of AYA
needs. Surveys alone cannot accomplish this simply because they predeter-
mine which issues are likely to be relevant and include only these issues
(Muntaner & Gomez, 2003). By providing a space to listen to AYA survivors,
and in particular to the interactions among them, researchers can gain insight

262 E. E. Kent et al.

into the mechanisms of AYAs’ experiences and the directions that future in-
vestigations should take (Morgan, 1997). This study sought to profile the
experiences of a selection of young adults living with cancer to better un-
derstand the issues that are most salient to these cancer survivors. Although
existing research has accomplished the task of identifying and quantifying
the needs of the AYA survivorship population (Kazak et al., 2010; Zebrack,
Hamilton, & Smith, 2009; Zebrack, Yi, Petersen, & Ganz, 2008), this article
uses qualitative methods to explore AYAs’ priorities, and perspectives on
the ways their unique situations affect psychosocial adjustment and interac-
tions with the health care system. As such, this article deepens the extant
knowledge base regarding the processes and factors distinguishing the AYA
experience, and in doing so, provides conceptual and concrete guidance for
health services delivery in this population.

METHOD

Focus group methodology was selected to elicit diverse perspectives through
the process of engaging individuals who have shared a common interest
(Morgan, 1997). In contrast with individual interviews, focus groups allow
the facilitation of dialogue between multiple survivors, which provides an
opportunity for participants to recognize the commonalities of their experi-
ences and potentially feel more comfortable sharing commonalities. Focus
groups also make it possible for participants to directly address other par-
ticipants, and to drive the discussion, rather than just responding to and
directing responses to the facilitator (Kieffer et al., 2005). We conducted four
focus groups with young adult cancer survivors and conducted two individ-
ual interviews with AYAs who could not join the groups due to scheduling
constraints. The individual interview data were ultimately included with the
group data in analyses as the emergent themes were complementary. Each
of the focus groups consisted of three to six members, totaling 17 survivors.
In addition, two survivors were interviewed individually, creating a total
sample size of 19. Participants were between ages 16 and 40 at diagnosis, an
age range that encompasses the NCI/LiveSTRONG AYA designation (15–39).
One half of the participants were female. The majority of participants were
non-Hispanic White (n = 15) but also included three Hispanic/Latino par-
ticipants and one Asian American. All participants had been diagnosed with
cancer between 6 months and 6 years ago.

The objective of the study was to inform researchers and practitioners
about patterns of shared experience in AYA survivors from time of diagnosis
onward. Purposive sampling by age at diagnosis, cancer type, and gender
was used to create diverse groups of young adult survivors (Bernard, 2002).
Participants were recruited from the local Orange County, California, chapter
of an AYA survivor network (I’m Too Young for This) as well as from patient

Young Adult Cancer Survivor Perspectives 263

TABLE 1 Participant Information

Participant Age Range Age Range Tumor Treatment
Alias at Diagnosisa at Interviewa Gender Type Phase

Adam 27–29 27–29 M NHL on treatment
Amy 15–19 20–23 F Hodgkin’s survivorship
Carly 24–26 27–29 F melanoma survivorship
Chloe 24–26 27–29 F NHL survivorship
Chris 20–23 24–26 M Wilm’s tumor survivorship
Dan 27–29 30–33 M brain tumor survivorship
Donald 24–26 30–33 M testicular survivorship
Elaine 15–19 15–19 F ALL on treatment
Evelyn 27–29 34–36 F Ewing’s sarcoma on treatment
Hannah 24–26 30–33 F AML survivorship
James 20–23 24–26 M NHL survivorship
Jason 30–33 34–36 M Hodgkin’s survivorship
John 20–23 24–26 M aplastic anemia survivorship
Maggie 27–29 30–33 F ovarian survivorship
Matt 34–36 37–39 M multiple myeloma survivorship
Olivia 20–23 30–33 F NHL survivorship
Rich 30–33 34–36 M brain tumor survivorship
Taryn 34–36 34–36 F ovarian survivorship
Tim 15–19 20–23 M ALL Survivorship

ALL = acute lymphoblastic leukemia; AML = acute myeloid leukemia; NHL = non-Hodgkin’s lymphoma.
aSpecific ages were restricted to protect participants’ confidentiality.

records from the young adult cancer clinic at the University of California
Irvine Medical Center. Depending on available contact information, potential
participants were sent an e-mail, a letter, or telephoned about the study up
to a total of 3 times. One individual and two of the groups were held in a
college campus conference room, one group was conducted at a young adult
cancer conference, and the remaining group met in the conference room of
a local hospital where many of the participants had received treatment. One
additional interview was held at a participant’s home, and the other at the
campus conference room. Table 1 provides demographic information about
the study participants.

The format of all interviews was semistructured, framed around the fol-
lowing question: “What do scientists, doctors, and the general public not
understand about adolescent and young adult cancer experiences?” Focus
group methodology was employed to encourage interaction among partici-
pants. Probes were kept to a minimum and used primarily for clarification, as
the emphasis was on letting each focus group shape the discussion that un-
folded from the initial question. Each group lasted approximately 90 minutes
and included either lunch or dinner. Informed consent was granted verbally,
and the discussions were audio-recorded and transcribed.1 The groups were
facilitated by the primary author (and in one group, by the third author), and
field notes were taken by three research assistants.

264 E. E. Kent et al.

Text from the transcripts was categorized according to theorized and
emergent themes (Glaser & Strauss, 1967). A form of narrative analysis,
hermeneutic phenomenology, was used to identify and code themes based
on the frequency with which they appeared in the texts, and more important,
the level of importance the speakers placed on those themes. Hermeneutic
phenomenology is an interpretive method that relies on the following ele-
ments: thick description of the encounters to be analyzed, critical reflection
of the components and subcomponents of the text (words, then phrases,
then passages) that relates each piece back to the whole, and a grounding
of the phenomena under investigation within the context of the participants
(Cohen, Kahn, & Steeves, 2000; Diekelmann & Ironside, 1998). The process
of applying hermeneutic circles (a process of reading and rereading a text
with careful attention each time to different portions of the text and how
they relate) led to the identification of thematic universes2 for further analy-
sis (Freire, 2000). A grounded theory approach guided coding of analytical
categories that emerged from the transcripts (Glaser & Strauss, 1967). Specif-
ically, transcribed interview text was read and reread multiple times by the
authors to understand the content of the interviews and to identify common
themes. Initial emergent themes were identified and discussed according to
the emphasis placed on these topics by study participants and by their re-
currence within and across texts. Each participant’s experiences were then
reanalyzed within each thematic category to explore patterns of experience
within a category. This approach led to the generation of the themes and
subthemes reported in this article.

Data analysis was conducted and coding decisions were made by the
two coauthors who facilitated the interviews. The rigor of the interpreta-
tions was further extended by ongoing discussion and feedback on findings
from study team members, two of whom are affiliated with the survivorship
advocacy community, and one of whom possesses substantial experience
working in clinical practice with AYAs.

RESULTS

The adolescent and young adult participants discussed many of the issues
that were salient to their cancer experiences. Most of the content of their
discussions fell within the following thematic areas related to survivorship:
(1) cancer care continuum challenges, (2) psychosocial concerns, and (3)
the AYA paradox, a metatheme (or pattern) that emerged from the analytic
process. Branching across the other two themes, this theme describes how
the AYA experience is unique because of the disjuncture between the de-
velopmental expectations and experiences of young adults and the ways
in which the cancer experience has been implicitly defined or understood

Young Adult Cancer Survivor Perspectives 265

TABLE 2 Thematic Categories and Subcategories of Hermeneutic Analysis

1. Challenges in the cancer care continuum Delays in diagnosis
Problems with adherence

2. Psychosocial concerns Changing social relationships
Financial burden

3. The AYA paradox Having cancer as an AYA

AYA = adolescent and young adult.

in terms of middle and later adulthood. Table 2 shows the categories and
subcategories identified in analysis.

Challenges in the Cancer Care Continuum

The first theme represents participants’ accounts of diagnosis, treatment, and
follow-up care. Doctors, nurses, and other providers were praised for the
quality of their care and compassion. At the same time, many survivors
highlighted challenges communicating with their health care providers in
two aspects of care in particular: in receiving timely diagnoses and navigating
care processes.

Delays in diagnosis. Diagnostic delays have been cited as a major chal-
lenge facing AYA cancer patients (Martin et al., 2007) and were reflected in
several participant comments. These comments illustrate a lack of awareness
of potential signs and symptoms of cancer in AYAs on the part of patients
and providers. One participant discussed not noticing changes in his health
state:

I didn’t have [any symptoms]. That’s the scary part to me. That I didn’t
feel anything. I almost hope that my experience helps the people . . .
at least the people who were around me at the time, so if they see a
little bump somewhere, they’ll take initiative and, like, go [seek medical
attention]. (James, diagnosed with non-Hodgkin’s Lymphoma [NHL] in
his early twenties)

Interactions with providers also seem to reflect incredulity at the possibility
that a young adult could have cancer. This lack of awareness ultimately led
to one survivor being diagnosed at a later stage:

Well, first of all, . . . the doctors . . . found a tumor on my ovary. And I said,
‘Could it be cancer?’ He said, ‘No, you’re too young for this.’ (Maggie,
diagnosed with ovarian cancer in her late twenties)

Failing to recognize early signs and symptoms of cancer can con-
tribute to later stage at diagnosis and poorer prognosis. Once diagnosed,

266 E. E. Kent et al.

participants continued to face challenges relating to their care, including
difficulties communicating with clinicians.

Problems with adherence. Some participants related the challenges of
understanding and adhering to complicated treatment regimens. One partic-
ipant reported problems with medication adherence that included taking a
higher dosage of steroids than intended. This individual referred to himself
as an “idiot” for not knowing how to read the medication and warned:

Doctors, they shouldn’t underestimate how stupid you can be about
misreading the pill bottles and things. (Matt, diagnosed with multiple
myeloma in his midthirties)

Misreading and misunderstanding medication instructions is a common
phenomenon that has little to do with intelligence (Nielsen-Bohlman, Panzer,
& Kindig, 2004), yet at least two participants blamed themselves for these
errors. Health care providers may be less likely to assume AYAs would be
prone to medication errors, but anyone, regardless of age, who is ill or
lacks experience with health care system could make such errors. Another
participant underscored this point:

I wasn’t really well enough to pay attention to my medication and stuff.
I had to do it all myself, but I didn’t know about medicine and the
doctors didn’t really tell me enough details. And so, sometimes, I’d mess
up with my medicine. One time, I was supposed to take these pills. And
I took too many on accident. It was, like, sixteen pills on Monday. Once
every two weeks. But I got it confused with sixteen pills every day. (Tim,
diagnosed with acute lymphoblastic leukemia [ALL] in his midteens)

These comments illustrate the confusion that survivors can face in trying to
comprehend and apply complicated medical instructions. They also support
possible mechanisms driving lapses in adherence. Although AYA patients
are often portrayed as noncompliant (Gesundheit, Greenberg, Or, & Koren,
2007), a portion of noncompliance may be involuntary, due to problems
in provider communication and health literacy that are not limited to older
adults, not to mention the stress of being ill that may further compromise
capacity to fully comprehend and follow self-care instructions.

Problems relayed by participants with respect to communication and
care coordination were consistent with problems already examined in the
extant literature. These challenges included the depersonalization of care, a
lack of empathy regarding the impact of diagnosis on one’s life, and the lack
of communication about late and long-term effects. Although not unique
to this age population, it is important to note that AYAs experience these
challenges too.

Young Adult Cancer Survivor Perspectives 267

Psychosocial Concerns

Like older cancer survivors, AYAs face a wide array of psychosocial con-
cerns as they transition into survivorship, including psychological and phys-
ical health effects, changing social relationships, and financial consequences
of their cancer. In terms of psychological health, one difficult aspect of AYA
survivorship reported by study participants was ongoing anxiety about re-
currence. Survivors discussed anxiety related to surveillance and follow-up
visits; one participant dubbed the associated emotional state “scanxiety.”
Given that population improvements in survival are accompanied by higher
risk for recurrence, AYA survivors may have to negotiate this uncertainty and
the accompanying anxiety for years. Among the concerns raised were issues
of infertility and having children.

Infertility and reproductive concerns. Although infertility was not a
topic that was explicitly probed, it emerged in the interviews as an important
issue. For those who discussed fertility concerns, many expressed remorse
about the possibility of being unable to have children. One woman’s quote
reveals the impact of discovering her infertility concurrently with her cancer
diagnosis:

So that was, like, a double diagnosis right there: infertility and cancer on
the same day. (Maggie)

Her designation of “infertility” and “cancer” as diagnoses reveals how
she placed equal importance on both pieces of news. Another participant
was told her chance of having children was limited and described how this
information contributed to lingering stress. Despite her odds, this survivor
became a mother of two after recovery.

Although most of the participants who discussed challenges regarding
fertility were female, one male participant mentioned fears that he and his
wife shared about being unable to have children. The rest of the male
participants did not raise this issue. It is unclear whether infertility was not a
concern for these participants, whether they had not thought about their own
fertility, or whether they did not feel comfortable discussing these concerns.
Survivors’ primary psychosocial concerns were related to changing social
relationships and financial concerns related to survivorship.

Changing social relationships. Participants in the study reported that
social support allowed them time to recuperate from their illness and treat-
ment; likewise a lack of social support created stress and hindered healing.
The benefits of having a partner, family member, or other trusted persons
to aid with financial responsibilities, child care, transportation, and emo-
tional support were directly tied to survivors’ quality of life and outlook on
cancer itself. Nearly all participants emphasized the importance of having
social support from a wide variety of sources, including caregivers and other

268 E. E. Kent et al.

survivors in their broader communities. Some addressed feelings of being
overprotected by their families. Others related stories of losing friendships
or relationships as a result of their cancer experience. Although feelings of
abandonment seem to be contradictory with feelings of being over-protected,
many survivors reported the occurrence of social processes, often coming
from different sources (for example, being over-protected by parents but
abandoned by school friends).

Care received from parents, siblings, partners, and close friends was
readily acknowledged by almost all participants. In this account, the cancer
experience was described as creating a circle of supporters.

The friends and family that did find out have been so supportive. . . . It’s
been very medicinal and healing having all of the love and support from
my friends and family. (Adam, diagnosed with NHL is his late twenties)

Absence of family close by or willing to help or lack of a romantic part-
ner posed unique challenges for young adults. Survivors with dependents
discussed the drive they experienced to keep pushing forward, even when
they felt scared or tired or sick from treatment. They described this drive as
a function of the need to take care of others:

Whenever I get chemo, I don’t feel good and I have to be there for [my
daughter] because she’s dependent on me. So I have to keep on going.
(Elaine, diagnosed with ALL in her midteens)

Elaine’s comment reflects the intertwined experiences of fighting cancer
and being a parent. These are two experiences that are deeply intense but
also non-normative for an adolescent. Although her comment speaks to the
role that dependents can play in helping to motivate AYAs, it also reveals
how confusing it can be to become a cancer survivor and a mother at this
age.

Some survivors expressed alternating appreciation and frustration for
their family’s role in their care. Survivors discussed grappling with their own
emotional responses to the cancer experience, which were compounded by
the need to also mitigate their caregivers’ stress. The term helicopter (as in
“helicopter parenting”) was also used to signify family members’ hovering
and vigilance behaviors. These behaviors were described with positive and
negative connotations; vigilance created a stable, supportive presence, but
it also restricted privacy and independence. Some AYAs who had recently
transitioned to living on their own found themselves living with their parents
during and after cancer treatment. This presented benefits and challenges:
the benefits of being cared for and supported and the challenges of feeling
infantilized by their families and situations.

Young Adult Cancer Survivor Perspectives 269

Another topic that emerged in changing social relationships was the im-
portance of connecting with other survivors. Past research has suggested that
connecting with other survivors is an important aspect of the healing process
for young adults with cancer (Zebrack, Bleyer, Albritton, Medearis, & Tang,
2006). Many participants discussed how much they valued the relationships
they had made with other survivors:

They called us “the three musketeers.” One of them was through every-
thing, including the transplant. The next one, in the middle, she was . . .
doing her chemo for her transplant. And I was the last one. . . . So I was
the newbie on the block . . . [a]nd . . . there’s times of feeling alone and
no one has any idea—from your mother to your boyfriend—has any idea
of what you’re going through. So, I formed relationships and bonds with
these two ladies and [we talked] all night long on the phone. (Hannah,
diagnosed with acute myeloid leukemia [AML] in her midtwenties).

Although many survivors reported the value of finding a community of
other survivors, some found it difficult to find survivors close in age and with
similar interests:

When I was in treatment, the support groups that were available to me
were men and women in their ‘50s and ‘60s. The men were all prostate
cancer survivors and the majority of the women [had] breast cancers and
here I am with my lymphoma as a 32-year-old, thinking I just want to get
better because summer’s coming. I want to go to concerts and baseball
games. (Jason, diagnosed with Hodgkin’s lymphoma in his early thirties)

Jason’s comment reflects the social isolation that AYA cancer survivors
may face when attempting to establish peer groups or survivor networks
that share common interests and face similar challenges. This issue is salient
because it not only affects survivors’ social networks but may also affect their
participation in research studies. For example, several participants indicated
their participation in the current study was driven by an interest in meeting
other survivors.

For many survivors, the experience of having cancer was catalytic in
changing social relationships, either enhancing intimacy or creating distance.
Some survivors who reported a loss of friends attributed this phenomenon
to cancer and the discomfort it engendered in others:

Once you get diagnosed, you’re instantaneously probably going to lose
about 90% of your friends because they get uncomfortable. It’s almost
like we remind them of mortality and they don’t understand that just
because, just because we have cancer doesn’t mean we’re going to die.
(Dan, diagnosed with a brain tumor in his late twenties)

270 E. E. Kent et al.

This phenomenon was not isolated to casual acquaintances; as one survivor
noted, even close relationships could change and erode:

I actually lost my best friend through this whole thing. My best friend in
the world . . . He just wasn’t there for me. . . . And it was my best friend
since we were 5 years old . . . he just wasn’t there for me at all. And he
didn’t even call to see how I was doing. (James)

Two of the female participants reported getting divorced during treat-
ment. Each expressed that the cancer experience catalyzed the breakups
because their partners were not willing or able to support them through
their disease. Many participants asserted that having cancer pushed them to
be more direct and honest about the status of relationships and to be ready
to end relationships that they could no longer prioritize.

Challenges related to initiating new romantic relationships and main-
taining current relationships also surfaced. Most participants agreed that the
experience of having cancer puts significant stress on new relationships.
Most single participants either avoided the topic of dating, or mentioned
they were not ready to begin dating. One of the participants reported diffi-
culty believing he would be able to find someone to love him again, lacking
the confidence and trust to begin dating. One aspect of the AYA experience
that was not fully captured in the discussions was discussion of sexuality.
Sexuality can be a difficult topic for cancer survivors to broach, regardless of
age, and the focus group format of this study may have influenced survivors’
discussion (or nondiscussion) of this sensitive topic.

Financial burden. Survivors described the challenges they faced re-
lated to securing and maintaining health insurance and supporting them-
selves and their families. Their comments reveal high levels of stress and
worry and personalize the realities of being un- or underinsured as an AYA.
Decreased survival for young adult cancer patients who lack health insur-
ance at the time of diagnosis has been reported previously (Kent et al.,
2010; Kent, Sender, Largent, & Anton-Culver, 2009), and the stories relayed
in this study explain why: diagnostic delays, receipt of treatment in emer-
gency rooms, and the concurrent stress of maintaining employment while
undergoing treatment may exacerbate illness. Many young adults are inde-
pendent and/or supporting young children and have difficulties suspending
competing demands on their time and energy when undergoing treatment.

Approximately one third of the participants mentioned difficulties in
acquiring or maintaining health insurance. Some lacked insurance before
their diagnosis because they could not afford coverage and/or felt that they
did not need coverage. Others had insurance at the time of diagnosis but
worried about future insurability. It is common for young adults to begin
their careers at jobs in which they are not offered health insurance coverage
by their employers. Young adults may also experience a gap in coverage

Young Adult Cancer Survivor Perspectives 271

between high school, college, and full-tune employment. Survivors may find
themselves unable to be covered by their parents but not in a position to
obtain other insurance. Affordability and access to insurance was also a
problem for participants who were working but did not receive coverage
through their employers. This scenario can force AYAs to seek treatment in
an emergency room, a nonoptimal strategy given crowding, wait times, and
lack of continuity of care (Olson, 1994).

One day, a lump came out right here on my neck, as big as an egg. And
then they did an X-ray and they found that all the lymph nodes on my
spinal column and all over my body was really, really big. That it was
a really growing . . . fast-growing cancer . . . I was going to the doctors.
And I was paying cash. We didn’t have insurance at that time. And when
they found out from the labs that I had cancer, I went to the emergency
room because I was almost dying. (Chloe, diagnosed with NHL in her
midtwenties)

Chloe’s account exemplifies the situation of being forced to visit an emer-
gency room due to lack of insurance. Although the reasons for being unin-
sured varied, participants who lacked insurance at the time of diagnosis
related stories of crisis. Lacking a health care home, a clear treatment plan,
or strategy for paying for treatment compounded cancer-related stress. Par-
ticipants who lacked insurance reported eventually being able to secure
government-assisted insurance (usually Medicaid), but in all cases, they re-
ported that this process delayed their treatment.

Young adults are often fulfilling and developing multiple new roles,
given that early adulthood is often spent starting a career and raising a fam-
ily. The perceived disregard by clinicians for the competing responsibilities
that young adult cancer patients may have, such as taking care of young
children, was evident in discussions. Although all cancer patients experience
interruption in their daily activities, the concerns expressed by AYAs suggest
a gap in support and services aimed at assisting with needs such as childcare,
transportation, and elder care.

The AYA Paradox

The AYA survivors who participated in this study revealed insights into the
paradox of having cancer (a set of diseases more prevalent in older age
groups) while being young and the resulting tension between being ill and
necessarily more dependent on others while in the process of transitioning
to independence. In most cases, the cancer diagnosis interrupted develop-
mentally normative life plans, and in some cases delayed or prevented the
attainment of important milestones such as attending prom, studying abroad,
going to graduate school, getting married, and having children. Revenson and

272 E. E. Kent et al.

Pranikoff (2005) discussed the concept of “off-schedule” illness, in which sur-
vivors are diagnosed at younger ages often have few age peers to relate to
and no time to prepare for disease onset, which then leads to difficulty in
securing resources and coping. One participant summed up this interruption:

I think, no matter how old you are when you’re diagnosed, there’s al-
ways interesting circumstances that happen in that point in time, but
particularly in high school, there’s prom; there’s getting your driver’s li-
cense. There’s all those different types of things that get postponed or
colored because of your experience while you’re sick. (Amy, diagnosed
with Hodgkin’s lymphoma in her midteens)

Participants themselves expressed a feeling of surprise about having to
deal with cancer at this point in their lives. They felt it represented a more
significant roadblock than it would for either an older or younger patient.

I think what a lot of people don’t understand is that when you’re diag-
nosed and going through this cancer, you are . . . you’re not the same as
everyone else in the room. You go to see the oncologist and everybody
else looks different. They’re all, typically, much older than you. . . . In my
case, they were more sick than I was. They have different concerns. My
wife would go to a support group and everybody there definitely had
different concerns. She was interested in will she be able to have a baby
and they’re all interested in will they be alive. (Donald, diagnosed with
testicular cancer in his midtwenties)

Some of the participants indirectly referred to symbols or metaphors
that reflect the perceived exclusion of their age range in cancer care and
research. One group joked about the magazine selection for patients receiv-
ing treatment in cancer centers, noting the selection included only children’s
magazines (e.g., Highlights) and magazines for older adults (e.g., AARP – The
Association for the Advancement of Retired People). One survivor referred
to the generational gap as a “diapers vs. dentures” issue. These comments
reflect that not only is it difficult for AYAs to come to terms with their illness
at their current life stage, they also struggle to find a place to belong in the
health care system.

DISCUSSION

The young adults who participated in this study revealed deep insight about
issues related to surviving cancer in adolescence and young adulthood. The
themes that emerged from discussions with these young survivors reflect
not only unmet needs but also a level of complexity should be recognized
with interventions that are tailored to the needs of young adults. Results

Young Adult Cancer Survivor Perspectives 273

support five key implications for future research in AYA survivors: improving
survivor outreach across the cancer care continuum, addressing family and
social relationships, increasing access and affordability of health insurance,
providing career and educational counseling, and recognizing AYAs as a
unique survivorship population.

Improving Communication Across the Cancer Care Continuum

Survivors’ stories reveal opportunities for improving communication about
cancer, treatment, side effects, and adherence to treatment and medication
regimens. Past research has identified that AYA survivors need comprehen-
sive information for treatment decision making, multidisciplinary provider
teams, opportunities to connect with other young adult patients, and consis-
tent and adequate health insurance coverage (Zebrack, 2008; Zebrack et al.,
2006; Zebrack, Chesler, & Kaplan, 2009). The participants of this study sug-
gest that a consistent and accessible system for organizing relevant health
information is imperative, and that health care providers should consider how
AYAs might prefer to receive this information. Current efforts to expand and
standardize survivorship care planning (Institute of Medicine, 2006) should
also consider the many life phases AYAs undergo as they transition through
their cancer journey. Many may be highly mobile during this time period
and may need a way to access their records remotely. Some may be transi-
tioning off follow-up care at a pediatric center and may need to find a new
medical home for their care. Care coordination over time, though critical for
all cancer survivors, must be considered carefully for AYA survivors.

Addressing Family and Social Relationship Issues

The effects of cancer on relationships emerged as a dominant theme in
the findings. The participants reported that in addition to providing care,
family and friends serve other important roles in the coping and healing
process, such as providing support and motivation. One study found sig-
nificant discrepancies in the level of importance placed on connecting with
peer survivors between patients and providers (Zebrack et al., 2006). Patients
placed this as a top priority, whereas doctors and nurses ranked this signif-
icantly lower. The benefits of pairing newly diagnosed patients with other
survivors or survivor networks have been increasingly recognized by oncol-
ogy care providers, but awareness of opportunities to connect AYA patients
to such outlets remain limited, as evidenced by the reports of several par-
ticipants. Several support and advocacy organizations now provide services
to help connect newly diagnosed patients with online networks. However,
in-person peer support is limited, and avenues for creating such programs

274 E. E. Kent et al.

should be further explored (Treadgold & Kuperberg, 2010). Furthermore,
support services should be available along the cancer care continuum to
help AYA survivors link to needed support to address their needs at diag-
nosis, during treatment, as they transition to recovery and years later as new
developmental challenges history emerge (e.g., partnering and having chil-
dren). Finally, information provision and counseling services for survivors
and their support-givers to help with communication and managing rela-
tionships should be included in comprehensive survivorship care plans and
integrated into follow-up care (Institute of Medicine, 2008).

Increased Access and Affordability of Health Insurance

Young adults in the United States are the least likely of all age groups to
have adequate health insurance (Ward et al., 2008). Lack of health insur-
ance can lead to delays in diagnosis (Martin et al., 2007), delays in receiving
treatment (Burg et al., 2010), and decreased survival (Kent et al., 2009; Kent
et al., 2010) in young adults with cancer. In addition to improving health care
coverage for the general population in this age range, policies to provide
insurance for young adults with cancer throughout their lifespan are neces-
sary and long overdue. The Unites States Affordable Care Act of 2010 now
allows individuals younger than age 26 to be covered by their parent’s health
insurance, prohibits lifetime limits, and phases out annual limits for coverage
for essential benefits (Bleyer, 2010). These provisions have the potential to
increase access to insurance and reduce some degree of financial burden,
which could remedy delays in diagnosis and treatment for AYAs. However,
AYAs may still experience difficulties as they age out of the coverage period.
More comprehensive health care reform not tied to an arbitrary age limit and
designed to promote preventive health care could shorten the time many
individuals wait to seek medical attention, improve diagnostic and treatment
delays, and reduce the financial burden and stress associated with being ill
and uninsured.

Career and Educational Counseling

In addition to increased access to health insurance, AYAs need assistance
with navigating career and educational trajectories and these concerns need
to be integrated into comprehensive survivorship care. Survivors’ reports
about competing responsibilities while undergoing treatment underscore the
need for health care providers to consider the many roles that young adult
patients play and to remember that these may be new roles for young adults
who are not well established in the workforce. Adolescent and young adult
survivors in particular may need more assistance managing transportation

Young Adult Cancer Survivor Perspectives 275

needs, child care, and reentry to school and to the workforce (Thompson,
Palmer, & Dyson, 2009). Furthermore, guidance about employment protec-
tions for those with a disability or history of cancer should be routinely
provided (Taskila & Lindbohm, 2007).

Recognizing AYAs as a Unique Survivorship Population

From diagnosis through treatment and follow-up, the results demonstrate
instances in which AYAs felt the medical care system could have been more
sensitive to AYAs’ age and life stage. Some survivors suggested physician
education programs in AYA medicine, to help train general practitioners and
oncologists to recognize and respond to AYA issues. Challenges such as
overcoming assumptions about AYA patient compliance (Gesundheit et al.,
2007; Windebank & Spinetta, 2008), improving communication about treat-
ment options (Zebrack, Chesler, et al., 2009) and fertility preservation (Fallat
& Hutter, 2008; Hart, 2008), and maintaining better and more consistent
long-term follow-up (Absolom et al., 2009) were highlighted in this study.

Limitations

This study has some limitations inherent to focus group methodology, in-
cluding the restriction of only observing verbal behavior and self-reported
data, in particular what is chosen and said aloud (Morgan, 1997). Participants
are aware of being in a formal setting, of their distance from the facilitator,
and of the presence of a recorder. In addition to the setting, the impact that
the facilitator may have had on the discussion is not ignorable, although as
the discussion progressed, participants tended to be more and more relaxed
with their comments, indicating increasing comfort with the discussion. Al-
though the number of participants was small, the sample yielded patterns
that emerged with some consistency from the first to the last group and in-
dicating that enough data were gathered to have gained complete accounts
of the experience (referred to as “saturation”; Cohen et al., 2000). Further-
more, the use of thick description to highlight specific social context that the
survivors in this study encountered as AYAs strengthens the likelihood that
our findings are likely transferable to AYAs with other tumor diagnoses and
from other regions (Lincoln & Guba, 1985).

Some AYA perspectives may have been omitted due to the composi-
tion of the sample. Although the sample includes individuals with a diverse
range of diagnoses (representative of the most common cancer types in
AYAs; Bleyer, Viny, & Barr, 2006) and is representative of both genders,
it underrepresents individuals in the Asian Pacific and African American
racial groups. Because of the sample composition, the experiences of these

276 E. E. Kent et al.

individuals, as well as non-White AYAs more broadly, are underrepresented,
as in most AYA research. This topic warrants future research, due to the
unique ways in which disparities in detection, surveillance, and access to
care during and after treatment may unfold for AYAs in underserved groups.
Finally, study participants were recruited through an AYA survivor network
and a comprehensive cancer center. All individuals were currently on treat-
ment, actively engaged in follow-up care, or engaged in an AYA network. It
is likely that those receiving care from a comprehensive cancer center were
receiving relatively high-quality care and some degree of follow-up. More-
over, those who were involved in the AYA survivor network were familiar
with AYAs as a “brand” and/or identity. The implication of these two inter-
secting factors is twofold. First, the study participants may be more aware
and/or articulate about the needs and unique contributions of AYAs than the
general population of AYA survivors. Second, this group may have had rel-
atively better experiences with the health care system than individuals who
are not actively engaged in treatment or follow-up care with a health care
system. The implications of this are that we may have underestimated the
overall impact of cancer on AYAs in many ways, such as financial burden,
social isolation, and effects on education and career trajectories.

Future Directions

This study represents one of the few qualitative studies documenting cancer
experiences in young adults (Jones et al., 2010; Miedema, Hamilton, & Easley,
2007; Peterson-Sweeney, 2005; Thompson et al., 2009; Yi & Zebrack, 2010;
Zebrack, Chesler, et al., 2009). As such, it provides specific information about
how and why AYAs’ experiences are similar to yet unique from other cancer
survivors’ experiences. The accounts reported herein may aid future quanti-
tative investigations by pinpointing key areas for exploration. Future inquiry
regarding challenges faced by this population in seeking treatment should
explore experiences leading up to diagnosis and should identify any barri-
ers (self-imposed or external) that may postpone medical attention seeking.
Inquiries into financial challenges faced by AYAs should include but not be
limited to health insurance; rather, investigations should also seek to explore
issues related to the competing responsibilities of maintaining employment
and/or finding new employment during treatment and survivorship when
one is at an early stage of career and job experience.

This study highlights specific unmet psychosocial needs that AYAs face
along with insight into the paradox of being young and having cancer.
Questions about how to best meet these needs remain, and as AYAs continue
to grow in number, a long-range view on the dynamic needs of survivors is
important for researchers and clinicians to maintain. We hope that studies
using focus groups and other qualitative methods continue to provide a space

Young Adult Cancer Survivor Perspectives 277

for survivor voices particularly as interventions continue to be developed and
tailored for AYAs.

NOTES

1. Aliases were given to the participants for identifying their statements in this article.
2. “Thematic universe,” a concept put forth by Paulo Freire (2000), refers to the “complex of gen-

erative themes” (p. 96) and involves meaning making that can only be born out of dialogical interactions
among people. The term is used deliberately here to signify the interaction of multiple levels of themes
that actually exist in the social world.

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An Uninvited Guest: Addressing Students’ Death
Anxiety in Oncology Social Work Field
Placements
Meuche, Glenn . Field Educator ; Boston Vol. 7, Iss. 1, (Spring 2017).

ProQuest document link

ABSTRACT (ENGLISH)

Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The inclusion of a curriculum that encourages self-

reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a positive influence and

direct correlation to their comfort level and openness to speaking with their clients about death and dying. The

supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and as

the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. The clinical

skills employed in oncology social work placements are unique and often different from interventions used for

instance, in mental health venues. Students discover themselves struggling with the clinical skills of the capacity

to sit with the silence and offer the gift of presence in end-of-life care. “Curricula that include discussions about

the psychology of illness, including defenses and their usefulness in helping people adapt to the many anxieties

raised by severe and life-threatening illnesses, would prepare students better for oncology placements” (Sormanti,

1994, p. 84). Bridging the academic component with the affective dimension of social work practice is integral to

the development of clinical acuity…

FULL TEXT
Social work student internships are an indispensable ingredient in the formation of students’ professional identity.

Field placements present a wide breadth of challenges that afford students fertile ground to refine their clinical

skills of active listening, engagement, and relationship. The issues that are addressed by students specializing in

psychosocial oncology and end-of-life care are unique. Students in these field placements are not only confronted

by their clients’ dying and death, but forced simultaneously to reconcile themselves to their own mortality as well.

Why, you may ask, take on this unpleasant, frightening subject? Why stare into the sun? Why grapple with the most

terrible, the darkest and most unchangeable aspect of life? […] Death […] is always with us, scratching at some

inner door, whirring softly, barely audibly, just under the membrane of consciousness. (Yalom, 2008, p. 9)

Death is an inescapable mortal wound that everyone experiences. Engaging with those who are dying is not an

isolated event, but instead, a collective experience. “Dying is a relational event, and the clinician cannot be neutral,

absent, or objective” (Berzoff, 2008, p. 182). The realization of death can become a wellspring, therefore, for

opportunity and growth. Its inevitability provides the impetus for us to engage with others in personal and intimate

ways.

Although the universality of death has the potential to connect human beings to one another on a deeper level, it

can lend itself to an existential crisis and heightened experience of death anxiety. Anxiety surrounding death

references “the perceived amount of emotional distress provoked by the anticipated total nonexistence of the self”

(Hui, Bond, &Ng, 2007, p. 200). Fear of death repeatedly is the “pink elephant in the room.” Its presence is palpable

https://www.proquest.com/scholarly-journals/uninvited-guest-addressing-students-

death-anxiety/docview/1924522581/se-2?accountid=14872

https://www.proquest.com/scholarly-journals/uninvited-guest-addressing-students-death-anxiety/docview/1924522581/se-2?accountid=14872

and yet it often remains unspoken. Death anxiety can range from a fear of ego-dissolution and annihilation to fear

of the dead. It may reveal itself in anxiety over the process of dying and fear of the unknown. Field instructors can

help students embrace these fears, reframe them, and understand how death anxiety can enhance the therapeutic

relationship and their capacity to share in the suffering of the other.

Clinically, the experience of death anxiety may contribute to students’ difficulty in establishing alliances and

facilitating rapport with their clients. The fear of death for instance, can manifest itself in students’ reticence in

initiating dialogue with their clients and sharing in meaningful conversation pertinent to death and dying. Students

may attempt to change the subject because of concern over upsetting their clients or engage in positive thinking

or reframing of their clients’ experience. In its worse scenario, death anxiety may translate to an avoidance of the

person who is at the end-of-life.

Professionals in end-of-life care have directed their attention to social work education and criticized the absence of

adequate training at times within the arena of death, dying, and loss. “Social work educators and clinicians have

repeatedly pointed out the need for social work curricula to place more emphasis on social workers’ attitudes

toward death, dying and bereavement” (McClatchey &King, 2015, p. 347). The inclusion of a curriculum that

encourages self-reflection and centers on students’ attitudes and beliefs surrounding end-of-life care has a

positive influence and direct correlation to their comfort level and openness to speaking with their clients about

death and dying.

The importance of death education to impart content knowledge about the death process and gaining insight into

the death attitudes of helping professionals has been emphasized by students, practitioners, educators, and

ethicists. It is clear there is a near universal agreement on the need for the inclusion of death education in the

training of helping professionals. (McClatchey &King, 2015, p. 346)

Therefore, it is critical that field placements situate emphasis on the experiential as well as the academic and

clinical component. Supervisors can encourage introspection and help student interns begin the process of

examining their insecurities and vulnerabilities pertaining to death, dying, and loss. This, however, would also

require field instructors to exhibit a willingness to recognize and connect with their own death anxiety and the

manner in which this impacts and directs their clinical work. Students not only model the clinical skills we impart

to them, but also with their clients they mirror the supervisory experience.

The supervisory relationship has been heralded as the cornerstone in the development of effective clinicians and

as the quintessential learning experience for the clinician, the foundation of students’ educational growth and

development, and the therapeutic alliance in which supervisees develop their own style. (Sormanti, 1994, p. 75)

Death anxiety and unfamiliarity with regard to skills that are solicited in oncology social work and end-of-life care

may account for students’ difficulty in recognizing the clinical dimension of these field placements. “Students

sometimes expressed concern that an oncology setting is ‘not clinical enough’ and that they feel they cannot apply

what they are learning in social work classes to their fieldwork” (Sormanti, 1994, p. 80). The clinical skills employed

in oncology social work placements are unique and often different from interventions used for instance, in mental

health venues. “Students describe clinical work as treatments with patients who can be labeled with a […]

diagnosis and as work that can be done in an office setting in 50-minute hours under a mutually agreed-on client-

worker contract” (Sormanti, 1994, p. 80). Students discover themselves struggling with the clinical skills of the

capacity to sit with the silence and offer the gift of presence in end-of-life care. “Many students are uncomfortable

with emotionality, in part related to their own histories, but also because they may not know ‘how to sit with it’ or

what to ‘do with it’ professionally” (Urdang, 2010, p. 531). Students’ discomfort with these skills may preclude their

ability to establish and foster therapeutic relationships with those who are dying. Beginning where the person is

entails the recognition of the innateness of suffering in the human condition and readiness, therefore, to begin

where death and dying are. “Being present means tolerating one’s own anxiety about death in order to be able to

help clients and families to tolerate their own” (Berzoff, 2008, p.179).

The following excerpt illustrates the discomfort that students experience. S was a student intern working with a

woman whose husband was diagnosed with stage IV metastatic pancreatic cancer. Her husband’s prognosis was

poor and although death was present, it nonetheless remained the “pink elephant” as the student was reticent in

opening the door. In addition to feeling confused and frightened by the prospect of her husband’s dying and death,

S’s client also articulated struggling with anger over which she subsequently experienced guilt.

Student: I see. It’s good that you’re reaching out to us. We’re here to listen. So I understand that he’s receiving

treatment for his pneumonia? How did that go?

Client: He’s doing well. He’s already back at home. Next month I’m going to meet with the oncologist. They said he

still has a 4mm tumor left. They shrank it down from 6mm. They’re talking about putting him on additional

chemotherapy to shrink the rest. He may even undergo a clinical trial. But my husband, he doesn’t want to. He said

his body is not able to handle it right now. And I don’t blame him. I won’t force him to go back. But I’m sure he will

change his mind once he talks to the doctor.

Student: Chemo must have been rough for him.

Client: Yeah it was. You know, he lost all of his hair. When it first started, he would just put his hand through his

hair and a bunch of hair could come out. He decided to shave it all off. Now he wants to wear hats. I always joke

with him and use humor to keep me positive.

Student: That’s admirable. Using humor is a very creative and effective way to cope. I’m glad you’re able to stay

positive through all this.

Client: But, you know, I also get angry over all this as well. It just isn’t fair what is happening to him. And then I feel

guilty for feeling this way. It’s hard sometimes.

Student: I understand that you and your husband moved recently?

Client: Yeah, I mean our families are here so there are always people checking in on us.

Student: I’m glad to hear that you have supportive people around you to help you cope with your husband’s

diagnosis.

Client: I won’t give up. I always know that God is out there looking out for me and my mother in heaven is looking

down on me.

In reflecting upon what transpired in the session, S was uncertain as to whether or not attention should center on

anticipatory loss or, instead, the client’s anger and guilt. The student writes, “It seems like the client wanted a place

to vent her worries that she cannot share with her husband. She mentioned feeling angry and that this might

perhaps be a goal for her to work on. I did not dwell on it further as our time was up and I was not sure if the anger

has anything to do with the cancer. However, this is a topic that can be clarified and possibly pursued if it

surrounds her husband’s cancer. Maybe I should go over goal setting with her instead of letting her vent? Even

though her initial request for counseling was simply to ‘have someone to talk to’ how do I shape this into a more

structured and organized discussion?”

The establishment of the therapeutic relationship is an integral aspect of oncology social work and end-of-life care.

Students discover themselves struggling at times with use of self and what they should disclose and reveal to

clients within the session. Many students, for instance, who herald from mental health settings, are dissuaded

from engaging in self-disclosure.

Several supervisors shared stories about students who were afraid to acknowledge that they used interventions

such as physical contact and sharing of personal information, which the supervisors believed was appropriate to

use, but students were discouraged from doing so in class. (Sormanti, 1994, p. 80)

Field instructors can respond to students’ concerns by helping them feel more comfortable with the clinical skills

that are encompassed in their work with the dying. Helping students develop the art of presence and encouraging

deep listening will enable them to interact with their clients in rich and profoundly empathic ways. In attempting to

transcend narratives that have been solely reduced to clinical technique, Frank (1998) suggests that:

The deeply ill person is the immediately needy one, and this person’s story deserves primary attention. Clinicians

may share parts of their own stories, but they do so in response to the ill person’s story. Reciprocity is sustained in

the appreciation with which the clinician receives the patient’s stories. To give the gift of listening is to appreciate

receiving the gift of a story. Not just understanding this reciprocity but embracing it seems to me to be the

beginning of clinical work. (p. 200)

Oncology social work and end-of-life care are emotionally laden field placements and students may feel

overwhelmed and stressed by continually witnessing their clients suffering. The intensity and range of emotions

that are articulated by clients can instill feelings of impotency in students. Field instructors have indicated an array

of challenges oncology social work presents to students and have underscored several factors that can contribute

to the complexity of supervising interns in these settings. The most notable influences on students are:

[…] constant confrontation with loss, dying, and death; exposure to physical mutilation and pain; negotiation

between social worker and clients of intense affective responses over a long period; immediate and strong

countertransference reactions; helplessness and frustration at ultimately being unable to save patients; and use of

a less restricted, unconventional set of boundaries. (Sormanti, 1994, p. 78)

Students may discover they are unprepared for this work and field placements sometimes lack the support that is

necessary to assuage the risk of vicarious trauma and compassion fatigue. Supervision, therefore, becomes more

complicated and field instructors may assume greater responsibility with regards to addressing their students’

needs.

Encouraging self-reflection among students can prove beneficial in promoting professional growth and

competency. The creation of a secure environment where students are able to engage in introspection is

paramount to developing insight into their beliefs and values surrounding death, dying, and end-of-life care.

“Students need educational support and direction to deepen their capacity to develop a professional self, including

an ability to recognize, understand, and utilize their feelings and insights on behalf of their clients” (Urdang, 2010,

p. 532). Working in oncology social work can become a potential battleground. A venue where students can

process the clinical work and address countertransference may help to mitigate the risk for burnout.

CancerCare’s student internship program acknowledges the significance of individual supervision and student

peer support groups as crucial in strengthening students’ resilience and enabling them to address the needs and

concerns of their clients who are living with cancer or may be at the end-of-life. Social work professionals have

emphasized the role of intersubjectivity in the therapeutic relationship, especially as it pertains to transference and

countertransference. Urdang (2010) has issued a call for process oriented clinical work and states that:

Students need to understand the interactional nature of work with clients, how to process this internally, and, when

appropriate, directly with clients; they first must learn how to process basic interview crunches before they can

move on to more intense crunches […] from clients. (p. 532)

Utilizing process recordings, for instance, not only serves as a vital tool in promoting self-reflection but elucidates

conscious as well as unconscious interpersonal dynamics between the student and client.

Recognizing the importance of death education in abating the impact of death anxiety, CancerCare has

established “Let’s Talk about Death” round-table discussions.

Helping those coping with death, dying, and bereavement can provoke confusing and frightening existential

questions and painful feelings of personal loss. Coming to terms with death involves both internal and

interpersonal processes that are influenced by individual and societal death attitudes. These attitudes profoundly

influence how one copes with death on an ‘up close and personal’ level as well as an abstract and complex

concept. (McClatchey &King, 2015, p. 345)

In these discussions, students are afforded an opportunity to share and process feelings and fears they may

harbor surrounding death and dying. In addition, CancerCare offers a variety of in-service programs that are

designed to expand students’ comprehension of cancer, treatment, and loss. “Curricula that include discussions

about the psychology of illness, including defenses and their usefulness in helping people adapt to the many

anxieties raised by severe and life-threatening illnesses, would prepare students better for oncology placements”

(Sormanti, 1994, p. 84). Bridging the academic component with the affective dimension of social work practice is

integral to the development of clinical acuity in oncology social work and end-of-life care. “It is imperative that

[students] are not only knowledgeable about the dying process but also feel a certain comfort level working with

this population and have increased insight into their personal attitudes and feelings about death, dying, and

bereavement” (McClatchey &King, 2015, p. 358).

Although death is an uninvited guest and is often depicted metaphorically as the Grim Reaper, it also has the

potential of opening doors to greater interiority and increasing the depth of human relationships. R, a second-year

student in CancerCare’s internship program, reflects:

The internship definitely guided me to raising self-awareness and comfort when having the conversation of death

and dying with others. There seemed to have been emphasis on meeting the clients where they are in their journey

– which I think is unique as CancerCare encourages this. I felt that the topic of death is very abstract and looking

back at my experience, CancerCare seems to be open-minded and supportive in this area.

Students working in oncology social work field placements may find their clinical skills challenged by death

anxiety. Supportive field instructors who are sensitive to the impact of death anxiety on students can help

ameliorate their fear of dying. Students will then become empowered and can begin the process of embracing the

challenge in order to enhance their connection to clients who may be at the end-of-life.

References

Berzoff, J. (2008). Working at the end of life: Providing clinically based psychosocial care. Clinical Social Work

Journal, 36(2), 177-184. doi:10.1007/s10615-007-0119-z

Frank, A. W. (1998). Just listening: Narrative and deep illness. Families, Systems &Health, 16(3), 197-212.

doi:10.1037/h0089849

Hui, V. K., Bond, M. H., &Ng, T. S. W. (2007). General beliefs about the world as defense mechanisms against death

anxiety. OMEGA: Journal of Death and Dying, 54(3), 199-214. doi:10.2190/8NQ6-1420-4347-H1G1

McClatchey, I. S., &King, S. (2015). The impact of death education on fear of death and death anxiety among

human services students. OMEGA: Journal of Death and Dying, 71(4), 343-361. doi:10.1177/0030222815572606

Sormanti, M. (1994). Fieldwork instruction in oncology social work: Supervisory issues. Journal of Psychosocial

Oncology, 12(3), 73-87. doi:10.1300/J077V12N03_05

Urdang, E. (2010). Awareness of self-A critical tool. Social Work Education, 29(5), 523-538. doi:

10.1080/02615470903164950

Yalom, I. D. (2008). Staring at the sun: Overcoming the terror of death. San Francisco, CA: Jossey-Bass.

DETAILS

Subject: Internships; Students; Fear &phobias; Curricula; Palliative care; Anxieties; Oncology;

Social work; Professionals; Attitudes; Education; Learning; Field study; Death &dying

Publication title: Field Educator; Boston

Volume: 7

Issue: 1

Publication year: 2017

Publication date: Spring 2017

Publisher: Simmons College

Place of publication: Boston

Country of publication: United States, Boston

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An Uninvited Guest: Addressing Students’ Death Anxiety in Oncology Social Work Field Placements

A National Action Plan for Cancer Survivorship:

Advancing Public Health Strategies

April 2004

This National Action Plan was developed to inform the general
public, policy makers, survivors, providers, and others about cancer
survivorship and public health. The National Action Plan was
written to be read by audiences with varying levels of knowledge and
awareness of cancer and/or survivorship issues. Each section has been
written as a stand-alone component allowing the reader to focus on
content specific to their interest. Therefore, some text is repeated to
accommodate those who read selected sections at a time.

This publication was supported by Cooperative Agreement Number U57/CCU 623066-01
from the Centers for Disease Control and Prevention. Its contents are solely the
responsibility of the authors and do not necessarily represent the official views of the Centers
for Disease Control and Prevention, the Department of Health and Human Services, or the
U.S. government.

CONTENTS

Special Acknowledgments iv

Index of Acronyms v

Executive Summary ES -1

I. Background 1

A. The Cancer Burden . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
B. Redefining Cancer Survivorship . . . . . . . . . . . . . . . . . . . 3

C. Issues for Cancer Survivors . . . . . . . . . . . . . . . . . . . . . . . 4

D. Public Health and Cancer Survivorship . . . . . . . . . . . . . . 8

E. Summary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

II. Strategic Framework 13

A. Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

B. Overarching Goals and Objectives . . . . . . . . . . . . . . . . . 14

C. Guidelines for the National Action Plan . . . . . . . . . . . . . 15

III. Cross-Cutting Needs and Strategies 19
IV. Surveillance and Applied Research 27

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 28

V. Communication, Education, and Training 35

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 36

VI. Programs, Policies, and Infrastructure 43

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 44

VII. Access to Quality Care and Services 51

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 52

VIII. Implementation 57

A. Indicators. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

B. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

Explanations of Phrases and Terms
(for terminology appearing in bold text) 61

References 67

Appendix A: Participating Partners and Reviewers A-1

Appendix B: Healthy People 2010 Cancer Objectives B-1

iii

SPECIAL ACKNOWLEDGMENTS

We gratefully recognize the combined knowledge, effort, and
commitment that our partners contributed to the completion of
A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.
We salute and thank the following partners who are leaders in the
cancer survivorship field.

Cosponsors

Centers for Disease Control and Prevention
Lance Armstrong Foundation

Partners

Alaska Native Tribal Health Consortium
American Cancer Society
American Society of Clinical Oncology
Cancer Care Incorporated
Centers for Disease Control and Prevention
Children’s Hospital of Los Angeles
Children’s Hospital of Philadelphia
Children’s Oncology Camp Foundation
Chronic Disease Directors
Congressman Roger Wicker’s Office
Dana-Farber Cancer Institute
Fertile Hope, Inc.
Gilda’s Club Worldwide
Institute for the Advancement of Social

Work Research
Institute of Medicine
Intercultural Cancer Council
Maryland Cancer Plan
Michigan Department of Community Health
National Cancer Institute
National Coalition for Cancer Survivorship
National Hospice and Palliative Care

Organization
National Institutes of Health
New York State Department of Health
North Carolina Division of Health and

Human Services
Oklahoma State Department of Health

Oncology Nursing Society
Ovarian Cancer National Alliance
Presbyterian Hospital of Dallas
Patient Advocate Foundation
RAND Corporation
RTI International
Saint Jude Children’s Research Hospital
Sisters Network, Incorporated
Sonnenschein Nath & Rosenthal
The Leukemia & Lymphoma Society
The National Center for Health Promotion
The Susan G. Komen Breast

Cancer Foundation
The Unbroken Circle
Texas Cancer Council
Texas Department of Health
Ulman Cancer Fund for Young Adults
University of Texas Medical Branch

School of Nursing
University of Minnesota
University of Pennsylvania Abramson

Cancer Center
University of Rochester
University of Texas, M.D. Anderson

Cancer Center
University of Texas Southwestern

Medical Center
United States Conference of Mayors

INDEX OF ACRONYMS

ACS American Cancer Society
BRFSS Behavioral Risk Factor Surveillance System
CCC Comprehensive Cancer Control
CDC Centers for Disease Control and Prevention
CIS Cancer Information Service
IOM Institute of Medicine
LAF Lance Armstrong Foundation
NAAP National Arthritis Action Plan
NCCS National Coalition for Cancer Survivorship
NCI National Cancer Institute
NHIS National Health Interview Survey
NIH National Institutes of Health
NPCR National Program of Cancer Registries
PHFSC Public Health Functions Steering Committee
SEER Surveillance, Epidemiology, and End Results
USDHHS U.S. Department of Health and Human Services

EXECUTIVE SUMMARY

The Facts

Cancer is the second leading cause of death among adults in the
United States and affects an estimated 1 in 3 individuals in their
lifetime, either through their own diagnosis or that of a loved one
(ACS, 2003). Increasing innovations in medical technology have led
to earlier diagnoses and improved treatment of many cancers,
resulting in more people diagnosed with cancer surviving each year.
Currently, approximately 62% of cancer survivors are expected to
live at least 5 years after diagnosis (ACS, 2003). As of January 2000,
there were approximately 9.6 million cancer survivors in the United
States (NCI, 2003a). This estimate includes people diagnosed with
cancer but does not include others affected by a diagnosis, such as
family members and friends.

The Challenge

Public health programs address the prevention and control of health
problems affecting large groups of people. Although many public
health initiatives address early detection, prevention, and control of
cancer, public health is new to the cancer survivorship arena.
Throughout this National Action Plan, the term “cancer survivors”
refers to those people who have been diagnosed with cancer and the
people in their lives who are affected by their diagnosis, including
family members, friends, and caregivers. Cancer survivors could
benefit tremendously from a coordinated public health effort to
support them. Survivors face numerous physical, psychological,
social, spiritual, and financial issues throughout their diagnosis and
treatment and for the remaining years of their lives. Many of these
issues could be successfully addressed through public health
initiatives, both by the prevention of secondary diseases or
recurrence of cancer and by improving quality of life for each
survivor. A public health effort to address cancer survivorship
supports the Healthy People 2010 goal to increase the proportion of
cancer survivors who are living 5 years or longer after diagnosis to
70% (USDHHS, 2000). Further, the financial burden of cancer
treatment is estimated to be at least $41 billion annually (NCI,
2003b), and this dollar amount does not reflect the burden of
cancer on the survivor in every other realm of life. Given this
information, it is in the country’s best interest to more effectively
and systematically provide public health services to cancer survivors.

ES-1

The Plan

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies

was developed through a partnership between the Centers for Disease
Control and Prevention (CDC) and the Lance Armstrong
Foundation (LAF) to identify and prioritize cancer survivorship
needs that will advance cancer survivorship public health efforts.
Specific objectives of the National Action Plan include the following:

• Achieve the cancer survivorship-related objectives in Healthy
People 2010 that include benchmarks for success in measuring
improvements for addressing ongoing survivor needs.

• Increase awareness among the general public, policy makers,
survivors, providers, and others of cancer survivorship and its
impact.

• Establish a solid base of applied research and scientific
knowledge on the ongoing physical, psychological, social,
spiritual, and economic issues facing cancer survivors.

• Identify appropriate mechanisms and resources for ongoing
surveillance of people living with, through, and beyond
cancer.

• Establish or maintain training for health care professionals
to improve delivery of services and increase awareness of
issues faced by cancer survivors.

• Implement effective and proven programs and policies to
address cancer survivorship more comprehensively.

• Ensure that all cancer survivors have adequate access to high-
quality treatment and other post-treatment follow-up
services.

• Implement an evaluation methodology that will monitor
quality and effectiveness of the outcomes of initiatives.

Once these objectives were identified, CDC and LAF brought
together experts in cancer survivorship and public health to create
this National Action Plan. Needs and strategies for addressing these
needs were discussed within four core public health components:

• Surveillance and applied research
• Communication, education, and training
• Programs, policies, and infrastructure
• Access to quality care and services

This National Action Plan represents these discussions and sets
priorities and identifies strategies for national, state, and
community-level public health organizations. Given the importance

ES-2

of this health issue—its prevalence, its impact on quality of life, and
the resulting costs to survivors and others in their lives—the time for
action is now. This National Action Plan should be used to guide the
allocation of resources to decrease the burden of cancer for all
Americans and improve the overall experience and quality of life of
the millions who are living with, through, and beyond cancer.

ES-3

Carlos, Cancer Survivor

“Survivorship means being given a second
chance at life.”

I. BACKGROUND

The number of people affected by cancer, both individuals
diagnosed with the disease and their families and friends, is
staggering. Although all Americans are at risk of a cancer diagnosis
in their lifetimes, there have been remarkable reductions in deaths
associated with cancer. These reductions in deaths are largely due to
the implementation of prevention and early detection efforts for
certain cancers, increased screening of the general population and
those at highest risk for developing these diseases, and advances in
research and clinical care. As of January 2000, there were
approximately 9.6 million persons living following a cancer
diagnosis in the United States (NCI, 2003a) not including family
members, friends, and caregivers. This number is expected to
increase steadily over the coming years.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies

was developed through a partnership between the Centers for
Disease Control and Prevention (CDC) and the Lance Armstrong
Foundation (LAF). Through this partnership and with input from
a variety of experts and advocates in public health and cancer
survivorship, this National Action Plan charts a course for how the
public health community can more effectively and comprehensively
address cancer survivorship, including the following:

• Preventing secondary cancers and recurrence of cancer
whenever possible.

• Promoting appropriate management following diagnosis
and/or treatment to ensure the maximum number of years of
healthy life for cancer survivors.

• Minimizing preventable pain, disability, and psychosocial
distress for those living with, through, and beyond cancer.

• Supporting cancer survivors in accessing the resources and
the family, peer, and community support they need to cope
with their disease.

The goal of this National Action Plan is to advance public health
efforts regarding cancer survivorship to actively address the needs of
this growing population.

The following section describes elements important to
understanding the issues cancer survivors face. Throughout this
National Action Plan, the term “cancer survivors” refers to those
people who have been diagnosed with cancer and the people in their
lives who are affected by their diagnosis, including family members,
friends, and caregivers.

I. Background 1

A. The Cancer Burden

Everyone is potentially at risk for developing some form of cancer.
The American Cancer Society (ACS) predicts that as many as 1.3
million new cancer cases will be diagnosed in 2003 (ACS, 2003).
Age is a primary risk factor for most cancers, with about 77% of all
cancers diagnosed among individuals aged 55 or older. Cancer
incidence varies by race and ethnicity, with some groups being more
likely to be diagnosed with certain types of cancers than others.
Cancer is the second leading cause of death in the United States,
causing 1 of every 4 deaths each year (ACS, 2004). If current
trends continue, one-third of Americans will be diagnosed with
cancer in their lifetimes (NCI, 2003a). There is a great deal of
misunderstanding about cancer, the effects it can have on those
diagnosed with it, and the importance of addressing the ongoing
needs of survivors as progress is made in finding treatments and
prolonging life after diagnosis.

How many people are expected to survive cancer?
As previously noted, there were approximately 9.6 million persons
living following a cancer diagnosis in the United States as of January
2000 (NCI, 2003a) not including family members, friends, and
caregivers. Survival rates from cancer depend a great deal on the site
where the initial growth began (e.g., breast, colon) and the stage of
progression at which the cancer was diagnosed (i.e., whether the
growth has metastasized). The implementation of prevention
(tobacco control and skin protective behavior) and early detection
efforts for four cancer types (breast, cervical, colorectal, and
prostate), which has increased screening of the general population
and those at highest risk for developing these diseases, and advances
in research and clinical care have led to remarkable reductions in
cancer-related mortality.

Despite the optimistic outlook for most individuals diagnosed with
cancer today, a closer examination of the literature and of statistical
trends indicates that the benefits of current knowledge about state-
of-the-art cancer care are not shared equally by all members of our
society (Aziz & Rowland, 2003). When survival rates are broken
down by race/ethnicity, it is clear that significant differences exist
across racial/ethnic minority and medically underserved populations
with respect to the risk of developing and dying from cancer. For all
cancer sites combined, African Americans are more likely to develop
and die from cancer than persons of any other racial or ethnic
group. They are also at greater risk of dying of the four most

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 2

common types of cancer (lung, breast, colon, and prostate cancer)
than any other minority group (ACS, 2004).

B. Redefining Cancer Survivorship

When cancer was considered incurable, the term “survivor” was used
to describe family members who survived the loss of a loved one to
cancer (Leigh, 1996). As knowledge and success in understanding
cancer increased, physicians began to use a 5-year time frame to
define survivorship. If cancer did not recur in the 5 years following
either diagnosis or treatment, patients were considered to have
become “survivors” (Leigh, 1996).

As a result of strong advocacy efforts and coordination led by such
organizations as the National Coalition for Cancer Survivorship
(NCCS), the term “cancer survivor” has been redefined. The term is
now commonly used to describe an individual from the time of
diagnosis through the remaining years of life (NCCS, 2003; Leigh,
1996). The National Cancer Institute (NCI) has also expanded this
definition to include caregivers and family members within its rubric
(Aziz, 2002). This definition—cancer survivor as the person
diagnosed with cancer, as well as family members, friends, and
caregivers—is the one used in this National Action Plan. The next
sections provide an overview of cancer survivorship and describe the
issues many survivors face every day.

What are the stages of cancer survivorship?
In “Seasons of Survival: Reflections of a Physician with Cancer,”
Mullan (1985) was the first to discuss the experience of cancer in
terms of a progression of events or stages. He proposed a model of
survival that includes three stages: “acute,” “extended,” and “
permanent.” The acute stage begins with diagnosis and spans the
time of further diagnostic and treatment efforts. Mullan describes
fear, anxiety, and pain resulting from both illness and treatment as
“important and constant elements of this phase.” This stage is
defined not only by the experience of the person diagnosed with
cancer but also by those of the family members who are affected by
the diagnosis.

The extended stage of survival begins when the survivor goes into
remission or has completed treatment. Psychologically, this stage is a
time of watchful waiting, with the individual wondering if symptoms
may be signs of recurrence or just a part of everyday life. Cancer
could return at the same site or in a new location. When treatment is
complete, diminished contact with the health care team can also

I. Background 3

cause great anxiety. Physically, it is a period of continued limitation
resulting from having had both illness and treatment. During this
stage, survivors may be learning to live with chronic side effects and
accompanying anxieties.

The permanent stage is defined as a time when the “activity of the
disease or likelihood of its return is sufficiently small that the cancer
can now be considered permanently arrested” (Mullan, 1985, p. 272).
Mullan acknowledges, however, that this stage is more complex than
simply the status of disease: a person in this stage may still face social
and economic challenges, such as problems with employment and
insurance, psychological challenges, the fear of recurrence, and
secondary effects from previous cancer treatment.

End-of-life issues can occur during any of the three stages.
End-of-life care affirms life and regards dying as a normal process,
neither hastening nor postponing death while providing relief from
distress and integrating psychological and spiritual aspects of survivor
care. The goal of end-of-life care is to achieve the best possible
quality of life for cancer survivors by controlling pain and other
symptoms and addressing psychological and spiritual needs.

Following the work of Mullan (1985) and Leigh (1996), LAF
defines the experience of cancer survivorship as living “with,”
“through,” and “beyond” cancer. Living “with” cancer refers to the
experience of receiving a cancer diagnosis and any treatment that
may follow, living “through” cancer refers to the extended stage
following treatment, and living “beyond” cancer refers to post-
treatment and long-term survivorship. Although this definition is
designed to signify the experience of survivorship as a progression,
this process is unique for each patient, and movement from one
phase to the next may not be clearly delineated.

C. Issues for Cancer Survivors

How does cancer affect individuals?
Diagnosis of cancer is a threat to a person’s physical, psychological,
social, spiritual, and economic well-being. During its various stages,
cancer can deprive persons diagnosed with it of their independence
and can disrupt the lives of family members and other caregivers.

Physical symptoms of cancer can be both acute and chronic and
can occur during and after treatment. Physical symptoms may
include pain, fatigue, nausea, hair loss, and others, depending on
the cancer site and the types of treatments a patient receives. The
symptoms experienced by some people with cancer can be
debilitating and may result in bed rest. Adequate palliative care to

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 4

provide pain and symptom management through every stage of
cancer and its treatment is a major concern for survivors. The late or
long-term physical effects of cancer itself and/or its treatment can
include decreased sexual functioning, loss of fertility, persistent
edema, fatigue, chronic pain, and major disabilities. These effects
can be devastating, resulting in a loss of mobility (e.g., loss of leg,
spinal injury) and changes in bodily functions (e.g., colostomy,
laryngectomy) and appearance (e.g., disfiguring surgery,
amputation). Major physical issues that affect long-term survival
include recurrence of the original disease, development of secondary
cancers, premature aging, and organ/systems failure.

Psychological issues associated with cancer diagnosis and
treatment includes fear, stress, depression, anger, and anxiety.
However, the effects of cancer on an individual are not always
negative. Cancer can also provide opportunities for people to find
renewed meaning in their lives, build stronger connections with
loved ones, and foster a commitment to “give back” to others who go
through similar experiences. After cancer diagnosis and/or
treatment, survivors can continue to live active, vital lives—but they
may live with the uncertainty and the fear that cancer might return.
People with cancer may also experience difficulties in coping with
pain and disability caused by either their disease or the treatment
they are undergoing. Emotional impacts on survivors can include
feelings of helplessness, lack of self-control, changes to self-esteem
and self-image for the survivor, and added stress and anxiety for
their caregivers (NCI, 2002).

Social well-being can be affected by cancer diagnosis and
treatment through the physical and psychological impacts discussed
above. The physical difficulties of pain and disability may result in a
decreased sense of social well-being by limiting the time survivors are
able to spend with important people in their lives. Survivors also
often experience increased difficulties in school or on the job, in
terms of their ability to interact with friends and coworkers, because
of the impact diagnosis and treatment can have on their self-image
(NCI, 2003b).

Spirituality can take many different forms in the lives of cancer
survivors; it can come from organized religion or from personal
beliefs and faith. Some survivors struggle with spirituality as part of
their cancer experience and say that their faith has been tested.
Others gain support from their faith and allow it to guide them
through their experience (NCI, 2002). Surviving cancer is a
complicated journey that takes its toll on the spirit as well as the body.
Some survivors wrestle with “why me” questions about having a cancer

I. Background 5

diagnosis or experience survivors’ guilt because they lived through
their diagnosis while others have died. Spiritually, survivors may deal
with unresolved grief, reevaluate their lives, reprioritize their goals
and ambitions, and redefine “normal” for themselves. Cancer
survivors are often looking for guidance and strength to help them
through the spiritual journey. In many cases, survivors’ spirituality
helps them to understand the meaning of their cancer experience and
embrace life with a renewed vigor and sense of purpose. Survivors
often gain strength through their faith; this strength allows survivors
and their loved ones to answer tough questions and to face each day
with love and confidence (NCI, 2002).

Economic costs incurred by survivors and their families are
another important consideration. Cost implications of cancer
include inability to access quality care, financial burdens resulting
from health care costs, and income loss resulting from work
limitations. Often, survivors have to cope with losing a job because
of their employers’ preconceived notions about the impact cancer
will have on their work capabilities. With job changes, survivors may
be unable to qualify for health insurance and often find it difficult
to obtain life insurance after diagnosis. Family members of cancer
patients may experience significant financial burdens while serving in
the role of caretaker, especially during the end-of-life phase.
Similarities or differences in the survivorship experience among
different racial or ethnic groups or among medically underserved
people are virtually unexplored.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 6

What are the common myths about cancer and
cancer survivorship?
There are many myths and misunderstandings about cancer and the
effects it can have on survivors. The following table summarizes some
selected myths and the facts to counteract these misconceptions.

Common Myth Facts to Counter Myth

Cancer is a disease Although approximately 77% of all cancer
that only affects older cases are diagnosed at age 55 or older,
people. everyone is at risk of developing some form of

cancer (ACS, 2003).

Cancer only affects
the person diagnosed
with the disease.

For many years, the focus of cancer diagnosis
and treatment was on the person diagnosed
with the disease. However, recent advances in
our understanding of survivorship have led to
the expanded definition of “survivor” to include
others touched by this disease, such as
families, friends, and caregivers.

Cancer is the same
for everyone.

Because cancer can occur anywhere within the
body, survivors can experience different
symptoms depending on the site of their
diagnosis. Depending on the site of the initial
cancer growth and the stage at diagnosis, the
available treatments and resources will vary
greatly, such that more services and resources
are available to survivors of certain cancers
(e.g., breast or leukemia) than for other rarer
forms of cancer (e.g., myeloma or laryngeal).

The need for care of
survivors ends once
treatment is complete.

Cancer can be a chronic disease that often has
long-term effects on a survivor’s life. Although
many cancers can now be cured or the growth
greatly slowed, the impacts of diagnosis will
remain with a survivor for years. Because more
survivors are living longer, especially those
diagnosed with cancer as a child or young
adult, there is a need to address long-term
issues of survivorship. These can include
ongoing physical, psychological, and other
types of issues (see Section I.C.)

Diagnosis of cancer
means certain death.

The risk of dying of cancer following diagnosis
has steadily decreased over the past several
decades. Fewer than half the people diagnosed
with cancer today will die of the disease; in
fact, some are completely cured, and many
more survive for years because of early
diagnosis or treatments that control many types
of cancer (ACS, 2004).

I. Background 7

Although many dedicated individuals and organizations have
contributed to reductions in the number of cancer diagnoses and an
increase in the likelihood of survival following diagnosis, much
remains to be done. An ever-growing population of cancer
survivors is in need of medical care, public health services, and
support. All of these factors need to be taken into account when
assessing the experience of cancer survivorship.

D. Public Health and Cancer Survivorship

A primary purpose of this National Action Plan is to identify areas
within the realm of public health that can be mobilized to address
the needs of cancer survivors. Although the role of biomedical
research is to increase our understanding of the causes and physical
effects of cancer, responsibility for applying knowledge about
potential interventions that can be implemented to eradicate disease
and/or improve the quality of life rests within both the medical care
and public health communities. Because cancer survivorship imposes
a tremendous individual and societal burden and proven
interventions are available to address survivor needs, a coordinated
public health effort is warranted. The focus of that effort should be
broad and encompass entire population groups, in contrast with the
medical model, which generally focuses on individual patients. The
following provides an overview of public health and existing
infrastructure that can be used to initiate efforts for cancer survivors.

What is public health?
Public health practice is the science and art of preventing disease,
prolonging life, and promoting health and well-being (Winslow,
1923). More recently, the Institute of Medicine (IOM) (1998) has
defined the mission of public health as assuring conditions in which
people can be healthy. Public health’s mission is achieved through
the application of health promotion and disease prevention
technologies and interventions designed to improve and enhance
quality of life (PHFSC, 1994). Health promotion and disease
prevention technologies encompass a broad array of functions and
expertise, including the 3 core public health functions and 10
essential public health services presented in the following table.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 8

Three Core Public Health Functions

• Assess and monitor the health of communities and populations at risk to
identify health problems and priorities.

• Formulate public policies, in collaboration with community and
government leaders, designed to solve identified local and national health
problems and priorities.

• Assure that all populations have access to appropriate and cost-effective
care, including health promotion and disease prevention services, and
evaluation of the effectiveness of that care.

Ten Essential Public Health Services

• Monitor health status to identify community health problems.

• Diagnose and investigate health problems and health hazards in
the community.

• Inform, educate, and empower people about health issues.

• Mobilize community partnerships to identify and solve health problems.

• Develop policies and plans that support individual and community
health efforts.

• Enforce laws and regulations that protect health and ensure safety.

• Link people to needed personal health services and assure the provision of
health care when otherwise unavailable.

• Assure a competent public health and personal health care workforce.

• Evaluate effectiveness, accessibility, and quality of personal and
population-based health services.

• Research for new insights and innovative solutions to health problems.

Source: Public Health Functions Steering Committee (PHFSC), 1994.

What is the relevant public health infrastructure for addressing
cancer survivorship?
Two agencies within the U.S. Department of Health and Human
Services—the National Institutes of Health (NIH) and CDC—have
been established to conduct research and implement public health
strategies to address cancer. Within NIH, NCI works to reduce the
burden of cancer morbidity and mortality among Americans. NCI’s
goal is to stimulate and support scientific discovery and its application
to achieve a future when all cancers are uncommon and easily treated.
Through basic and clinical biomedical research and training, NCI
conducts and supports research programs to understand the causes
of cancer; prevent, detect, diagnose, treat, and control cancer; and
disseminate information to the practitioner, patient, and public
(NIH, 2003). NCI works to “enhance the quality and length of
survival of all persons diagnosed with cancer and to minimize or

I. Background 9

stabilize adverse effects experienced during cancer survivorship”
(NIH, 2003). Through its conduct and support of research, NCI
works to effectively address all issues facing cancer survivors (see
Section I.C.).

Within the CDC, the National Center for Chronic Disease
Prevention and Health Promotion works to prevent cancer and to
increase early detection of cancer. CDC works with partners in the
government, private, and nonprofit sectors to develop, implement,
and promote effective cancer early detection, prevention, and
control practices nationwide (CDC, 2003a). Within the CDC, the
National Comprehensive Cancer Control (CCC) Program
provides a mechanism for addressing cancer survivorship within the
realm of public health.

Background on the CDC’s Comprehensive Cancer
Control Program
CDC began implementing the CCC Program through state health
departments and other entities in the mid-1990s and defines this
Program as “an integrated and coordinated approach to reducing
cancer incidence, morbidity, and mortality through prevention,
early detection, treatment, rehabilitation, and palliation” (CDC,
2002, p. 1). This strategy aims to engage and build a coordinated
public health response and provide a way to assess and then address
the cancer burden within a state, territory, or tribal organization.
Not only do state-level CCC Programs build on the achievements of
cancer programs, they enhance the infrastructure created for them—
many of which focus on individual cancer sites or risk factors.
Partnerships between public and private stakeholders whose
common mission is to reduce the overall burden of cancer provide
the foundation for these statewide programs:

“These stakeholders review epidemiologic data and research evidence

(including program evaluation data) and then jointly set priorities for

action. The partnership then mobilizes support for implementing these

priorities and puts in place a systematic plan to institutionalize the

comprehensive approach as a means to coordinate activities, monitor

progress over time, and reassess priorities periodically in light of emerging

developments in cancer and related fields” (CDC, 2002, p. 2).

Public health agencies are using this support to establish broad-
based cancer coalitions, assess the burden of cancer, determine
priorities for cancer prevention and control, and develop and

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 10

implement comprehensive plans, most of which include addressing
the needs of cancer survivors.

E. Summary

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies

was developed to identify and prioritize cancer survivorship needs
and strategies within the context of public health that will ultimately
improve the overall experience and quality of life of the millions of
Americans who are living with, through, and beyond cancer. It can
be used by state agencies, organizations, and individuals in selecting
and developing activities to comprehensively address cancer
survivorship. The primary outcomes of this National Action Plan are
to increase awareness among the general public, policy makers,
researchers, advocates, survivors, and others of the role public health
can play in advancing cancer survivorship issues and to stimulate
organizations to take action to meet the identified needs in
surveillance and applied research; communication, education,
and training; programs, policies, and infrastructure; and access to
quality care and services.

I. Background 11

Theodore, Cancer Survivor

“Survivorship means more time and responsibility –
time for family, friends, work and life.”

II. STRATEGIC FRAMEWORK

CDC and LAF collaborated in 2002 to comprehensively address
cancer survivorship within the realm of public health. Through a
series of subsequent meetings among key partners (Appendix A),
areas within public health that could be enhanced to address cancer
survivorship were identified.

To expand these efforts to additional partners, including
numerous organizations, advocates, survivors, and researchers, the
CDC and the LAF conducted a workshop in June 2003 entitled
Building Partnerships to Advance Cancer Survivorship and Public
Health. This 2-day workshop brought together nearly 100 experts
from multiple disciplines to discuss how public health can be
mobilized to address cancer survivorship in the identified public
health areas. Using the core public health functions and services as a
guide (see Section I.D.), participants were led through a process to
identify priority needs in the following four identified topic areas
within the realm of public health:

• Surveillance and applied research
• Communication, education, and training
• Programs, policies, and infrastructure
• Access to quality care and services

The culmination of these efforts is A National Action Plan for Cancer
Survivorship: Advancing Public Health Strategies. This National Action Plan
provides a vision and a framework for addressing the problems faced
by cancer survivors in our nation. It further proposes strategic
initiatives that would constitute a coordinated, responsible approach
within the entire public health structure, including at the national,
state, and community levels. This National Action Plan is
groundbreaking in that it outlines a comprehensive, systematic public
health approach to acknowledging and addressing cancer survivorship.

A. Purpose

The goal of this National Action Plan is to identify and prioritize
cancer survivorship needs and identify strategies within public health
to address those needs that will ultimately lead to improved quality of
life for the millions of Americans who are living with, through, and
beyond cancer. A first step in addressing these needs is to develop
strong partnerships with health professionals, researchers, survivors,
advocates, and other key stakeholders. These partnerships will serve
to identify and prioritize the steps necessary to integrate cancer

II. Strategic Framework 13

survivorship issues into the public health domain. Outcomes of the
National Action Plan’s development include the following:

• Laying the foundation for public health activities in
cancer survivorship.

• Identifying, discussing, and prioritizing strategies to expand
and enhance the role of public health agencies and
practitioners in cancer survivorship.

• Facilitating the development and enhancement of
collaborations and partnerships that will assist with the
expansion of public health’s role in cancer survivorship.

B. Overarching Goals and Objectives

The overarching goal of this National Action Plan is to establish a
coordinated national effort for addressing cancer survivorship within
the realm of public health. Specific objectives include the following:

• Achieve the cancer survivorship-related objectives in Healthy
People 2010 (Appendix B) that include benchmarks for
success in measuring improvements for addressing ongoing
survivor needs.

• Increase awareness among the general public, policy makers,
survivors, and others of cancer survivorship and its impact.

• Establish a solid base of applied research and scientific
knowledge on the ongoing physical, psychological, social,
spiritual, and economic issues facing cancer survivors.
• Identify appropriate mechanisms and resources for ongoing
surveillance of people living with, through, and beyond
cancer.
• Establish or maintain training for health care professionals
to improve delivery of services and increase awareness of
issues faced by cancer survivors.
• Implement effective and proven programs and policies to
address cancer survivorship more comprehensively.

• Ensure that all cancer survivors have adequate access to
high-quality treatment and other post-treatment
follow-up services.

• Implement an evaluation methodology that will monitor
quality and effectiveness of the outcomes of this initiative.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 14

C. Guidelines for the National Action Plan

Addressing and achieving the National Action Plan’s goals and
objectives require a multifaceted approach that is both ambitious and
feasible. The National Action Plan consists of prioritized needs and
strategies in four major areas of public health work, which are
defined below: surveillance and applied research; communication,
education, and training; programs, policies, and infrastructure; and
access to quality care and services.

C.1 Surveillance and

Applied Research

Surveillance and applied research are the scientific tools of public
health and can be used to establish a solid, systematic knowledge base
in cancer survivorship.

Surveillance

Cancer surveillance is the systematic collection, analysis, and use of
cancer data. Information obtained through surveillance measures is
critical for directing effective cancer prevention and control programs
(CDC, 2001). Primary surveillance measures include cancer registries
and several national and regional/state surveys. Cancer registries
(National Program of Cancer Registries [NPCR]; Surveillance,
Epidemiology, and End Results [SEER] Program) implement and
maintain information systems designed to collect and manage data on
each newly diagnosed case of cancer. National surveys, such as the
National Health Interview Survey (NHIS) and the Behavioral Risk
Factor Surveillance System (BRFSS), provide information on health
attitudes, beliefs, and behaviors that could be used to help understand
issues related to all stages of cancer survivorship.

Applied Research

Cancer survivorship research in a public health context would focus
efforts on applying our knowledge of cancer and issues survivors face
to the development of appropriate interventions. Understanding

specific structural, policy, or behavioral barriers to desired outcomes
and evaluating programmatic efforts are other examples of applied
research. Applied research investigates the extent to which these
efforts effectively address survivor needs and provides findings that
can guide further development of initiatives.

C.2 Communication, Education, and Training
Communication, education, and training include efforts to
communicate with the general public and policy and decision makers,
educate survivors and their families, and train health care providers

II. Strategic Framework 15

to meet informational needs of all those affected by cancer
survivorship.

Communication with the Public

Communication with the general public and policy or decision
makers about the issues surrounding cancer survivorship aims to
create a societal understanding and acceptance of the growing
population of cancer survivors and the issues they face.

Survivor Education

Education of cancer survivors includes provision of information
tailored to the particular stage of survivorship. Such educational
interventions may be most appropriate during the first 5 years after
diagnosis as this is the time when many of the challenges associated
with the adjustment to survivorship occur (Mullan, 1984).

Provider Training

Health care provider training aims to ensure that providers are
aware of the medical and other special needs of cancer survivors so
they can offer the spectrum of services available to enhance quality
of life throughout survivorship and refer survivors to these services
as appropriate.

C.3 Programs, Policies, and Infrastructure
Programs, policies, and infrastructure are the means by which
change can be made in public health.

Programs

Programs are the actual implementation of specific interventions at
the national, state, and community levels to address a public health
problem (NAAP, 1999). Medical, psychosocial, legal, and financial
issues could be addressed by programs that are comprehensive in
scope and encompass care for each stage of cancer survivorship.

Policies

Policies include legislation, regulations, ordinances, guidelines,
and norms that establish an environment conducive to program
implementation and other changes specific to survivorship (NAAP,
1999). These policies may be implemented at the national, state,
organizational, and community levels in an effort to advance
public health.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 16

Infrastructure
Infrastructure is comprised of the basic resources and facilities in
place to address survivorship and includes components of the health
care and public health systems, such as state and local health
departments, and the services and programs they provide. Effective
infrastructure is required to operate and manage effective programs.
As our health care system continues to evolve, delivery of quality care
becomes more complex. Relationships among the public and private
sectors, individual practitioners and managed care organizations,

and voluntary health organizations directly influence access to care
and provision of clinical and community services (NAAP, 1999).

C.4 Access to Quality Care and Services
Access to quality care and services means ensuring that survivors
have access to evidence-based and appropriate treatment and services
delivered in a timely and technically competent manner, with good
communication, shared decision making between the cancer survivor
and health care providers, and cultural sensitivity across the
continuum of care and throughout the remainder of life (IOM,
1999). Public health can play a role in identifying and disseminating
proven programs in the following areas to groups of cancer survivors.

Access to Quality Treatment

Cancer treatment is complex and differs for each individual based on
his or her specific situation and needs. All cancer patients should
have timely access to the latest and most effective treatments available.
This would include clinical trials, if appropriate.

Pain and Symptom Management

An important part of cancer treatment is the management of pain
and other symptoms associated with both disease and treatment. The
goal of pain and symptom management is to provide relief so that
survivors can tolerate the diagnostic and therapeutic procedures
needed to treat their cancer and live comfortably throughout each
stage of cancer survivorship.

End-of-Life Care

Issues facing survivors and their families during end-of-life are
complex and serious. Appropriate end-of-life care affirms life and
regards dying as a normal process, neither hastening nor postponing
death. The goal of end-of-life care is to achieve the best possible

quality of life for cancer survivors. Although many survivors live
many years beyond their diagnosis, the needs and desires of those
who are in the process of dying must be addressed.

II. Strategic Framework 17

Lindy, Cancer Survivor

“Survivorship means I get to watch my
grandchildren growing up.”

III. CROSS-CUTTING NEEDS AND STRATEGIES

Four primary topic areas (see Section II.C.) for advancing cancer
survivorship within the realm of public health have been identified:

• Surveillance and applied research
• Communication, education, and training
• Programs, policies, and infrastructure
• Access to quality care and services

Within these topic areas, five specific cross-cutting needs
were identified.

1. Develop an infrastructure for a comprehensive database on
cancer survivorship.
Increasing the capacity of surveillance systems to capture information
on health topics of interest can lead to a better understanding of
diseases and the people affected by them. Effective survivorship
research is dependent upon the integration and interaction of many
information sources that serve as a strong and comprehensive
infrastructure for study. A comprehensive database system could
provide information on the ongoing health and other issues facing
survivors. It could also provide the opportunity to follow survivors
for many years after cancer diagnosis in order to better understand
the long-term effects of having this disease. Enhancing the existing
surveillance and research infrastructure can also ultimately lead to
the development and implementation of strategies identified for
other topic areas outlined in this National Action Plan. The
following strategies focus on the specific data needs for cancer
survivorship that have been identified to enhance the existing
surveillance systems and applied research initiatives:

• Develop a national Work Group or Task Force composed of
diverse organizations, representing private, nonprofit, and
governmental agencies, to identify data needs for ongoing
follow-up and confidential monitoring of cancer
survivorship issues (e.g., treatment course and outcomes,
quality-of-life indicators, long-term effects of diagnosis
and treatment).

• Assess existing data on cancer survivors to identify gaps in
order to determine areas of future research.

• Develop consensus on a set of data items or indicators used
in the collection and analysis of cancer survivorship data,
including data needed for long-term follow-up on survivors.

III. Cross-Cutting Needs and Strategies 19

• Improve coordination among existing databases (e.g., NPCR,
BRFSS, SEER), and add data variables or indicators where
possible to collect supplementary information on
cancer survivors.

• Develop a centralized resource center (i.e., clearinghouse)
that includes linkages to all existing data sources and that
provides for longitudinal data collection, monitoring,
and follow-up.

• Increase the number and types of funding opportunities to
enable a broader range of researchers to participate in
survivorship surveillance activities.

• Use existing information technology to gather data on cancer
diagnosis, treatment, and long-term issues and report the
data in a timely manner.

• Provide widespread access to public data sets as quickly as
possible to enhance research activities.

2. Develop, test, maintain, and promote patient navigation
systems that can facilitate optimum care for cancer survivors.
Patient navigation is a tool that can be used to ensure that survivors
understand their care and their process of care, and to enhance the
delivery of optimum care. In these programs, health professionals
and highly trained patient liaison representatives coordinate health
care for patients and assist them in navigating the health care system.
These navigators can provide information that will help educate the
survivor about his or her health needs and concerns, ensure timely
delivery of care, connect survivors with appropriate resources that
will meet their needs, and provide general oversight to the delivery
and payment of services for each survivor. Key strategies for
developing and maintaining these programs include the following:

• Establish infrastructure of the patient navigation system,
consisting of appropriate existing national organizations, to
implement a national program with consistent delivery of
services for cancer survivors.

• Promote universal input and buy-in by having patient
navigation system co-branded and co-owned by all
appropriate organizations.

• Identify existing types of patient navigation systems delivered
in a variety of locations or through different mechanisms
(e.g., rural, urban, on-line, print, telephone, clinical trials),
and determine those that are considered best practices.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 20

• Develop a database of existing and tested patient navigator
tools/programs and educate survivors and others at the
national, state, and community levels on their use.

• Plan, develop, and incorporate patient navigation systems
into state comprehensive cancer control plans.

• Develop policies to require insurance coverage of patient
navigation services.

• Develop effective patient navigator tools that address issues of
disparity (e.g., race, ethnicity, education, geography,
income, gender) among survivors.

• Encourage cancer survivors to volunteer their time (in-kind)
to serve as individual navigators servicing other survivors.

3. Establish and /or disseminate clinical practice guidelines for
each stage of cancer survivorship.
Clinical practice guidelines are defined by the IOM as
“…systematically developed statements to assist practitioner and
patient decisions for specific clinical circumstances” (IOM, 1992).
These guidelines summarize the collective research on outcomes
pertaining to one disease. When using the guidelines, physicians have
to select from among the guideline recommendations those that
seem most applicable to each individual’s care. In their statement,
“Principles of Quality Cancer Care,” the Cancer Leadership Council
emphasizes that all people with cancer need to have timely access to
care that is based on the best available evidence (NCCS, 2003).
Treatment options should include access to clinical trials, therapies
to manage side effects, and services to help survivors and caregivers
cope with emotional and practical concerns. Guidelines have been
developed for the treatment of particular cancers, but they are not
necessarily comprehensive in the sense of specifying care for
survivors at each stage of cancer survivorship (e.g., monitoring
survivors after treatment is completed, monitoring long-term health
care). Guidelines are also in place to address end-of-life care so that
survivors do not suffer from intense pain and discomfort during the
final stages of life (IOM, 1997). The following strategies are
proposed to systematically move toward quality and timely service
provision so that guidelines are available throughout every stage of
living with, through, and beyond cancer:

• Charge appropriate groups working on cancer survivorship
issues (e.g., National Comprehensive Cancer Network,
American Society of Clinical Oncology, NCCS) to develop
clinical practice guidelines specific to each stage of
cancer survivorship.

III. Cross-Cutting Needs and Strategies 21

• Establish a centralized location for housing these guidelines
(e.g., National Guidelines Clearinghouse, Cancer
Information Service [CIS]).

• Develop both consumer and health care provider versions of
each clinical practice guideline and disseminate through
multiple channels and organizations.

• Require that programs funded by public health organizations
include implementation of clinical practice guidelines
(e.g., state cancer plans, CCC Programs).

• Ensure accessibility of services named in each clinical
practice guideline.

• Conduct ongoing evaluation of guidelines and use results to
assess utilization. Modify guidelines as needed.

• Provide training to cancer and non-cancer health
professionals about guidelines to maximize
workforce development.

• Ensure quality workforce by requiring ongoing training on
such topics as cultural sensitivity and palliative care.

• Assess gaps in the health care workforce and develop
strategies to recruit and retain quality service providers.

4. Develop and disseminate public education programs that
empower cancer survivors to make informed decisions.
No one medical answer is right for everyone. Cancer survivors are
faced with extremely difficult medical decisions at each stage of living
with, through, and beyond cancer. In making difficult medical
decisions, survivors need to thoroughly understand their options for
care and why it is in their best interest to participate fully in the
decision-making process. The informed decision-making process
also enables physicians to more fully understand the attitudes and
values of their patients, especially those with diverse cultural
backgrounds. A growing body of research shows that when patients
are well-informed and play a significant role in deciding how they
are going to manage their health, the results are more positive.
Informed patients feel better about the outcomes of the decision-
making process and are therefore more likely to follow their
providers’ recommendations (Mulley, 1995). Key strategies for
addressing this need include the following:

• Form a national Task Force to develop programs addressing
public education among survivors, and create a multifaceted
strategic plan around this issue.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 22

• Identify existing resources available to survivors to facilitate
informed decision making and advocacy skills, and develop
programs or materials where information is lacking.

• Charge the national Task Force with implementing marketing
strategies and a multimedia campaign to effectively educate
survivors about issues and available education programs,
using numerous modes for communication (e.g., Internet,
print media).

• Disseminate and encourage implementation of best practices
for enhancing informed decision making through a variety of
venues (e.g., health care providers, advocacy groups,
government agencies, legislators).

5. Conduct ongoing evaluation of all activities to determine
their impacts and outcomes and ensure continuous quality
improvement of services.
Evaluation planning and implementation are important processes in
program development. The ultimate goals of these processes are to
assess program implementation and outcomes, to increase program
efficiency and impact over time, and to demonstrate accountability
(CDC, 2001). According to CDC’s “Framework for Program
Evaluation in Public Health” (1999), program evaluation is an
essential organizational practice in public health. The Framework
proposes that evaluation is necessary to use science as a basis for
decision making and public health action, expand the quest for social
equity through public health action, perform effectively as a service
agency, make efforts outcome-oriented, and be accountable (CDC,
1999). For evaluation to be effectively implemented, quality
indicators need to be developed for programs and services so that
progress toward articulated goals can be measured. These evaluation
efforts should be continuous so that improvements can be made
during all phases of program implementation. The following
strategies could be used to comprehensively include evaluation and
quality improvement in addressing all needs:

• Identify evaluation measures for each type of program or
strategy implemented from the National Action Plan.

• Conduct theoretically-based and scientifically-grounded
studies to assess implementation.

• Disseminate evidence-based program evaluation findings
through public health organizations and other venues in
order to maximize use of information.

III. Cross-Cutting Needs and Strategies 23

Section III Summary:
Cross-Cutting Needs for Cancer Survivors

1. Develop an infrastructure for a comprehensive database on
cancer survivorship.

2. Develop, test, maintain, and promote patient navigation systems that
can facilitate optimum care for cancer survivors.

3. Establish and / or disseminate clinical practice guidelines for each
stage of cancer survivorship.

4. Develop and disseminate public education programs that empower
cancer survivors to make informed decisions.

5. Conduct ongoing evaluation of all activities to determine their impacts
and outcomes and ensure continuous quality improvement of services.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 24

Jan, Breast Cancer Survivor

“Survivorship is the ultimate understanding of
one’s purpose in life.”

IV. SURVEILLANCE AND APPLIED RESEARCH

A. Goals

Surveillance and applied research are integral elements of any public
health initiative. Surveillance provides data items or indicators on
diseases and populations affected by them in order to understand
what is associated with diagnosis, health care outcomes, and
numerous other variables. Applied research uses these data to better
understand how initiatives can be designed to more effectively
address and meet the needs of groups of people. For cancer
survivorship, goals for this topic area include the following:

• Enhance the existing infrastructure to create a
comprehensive surveillance system that can be used to
understand the range of health issues that cancer survivors
face and any differences between survivor groups based on
demographic and medical variables.

• Thoroughly understand the factors associated with
susceptibility to problems during each stage of
cancer survivorship.

• Translate the research on cancer survivorship into practice by
developing, implementing, and evaluating effective health
intervention strategies.

Surveillance and applied research are the scientific tools of
public health and are defined here and in Section II.C. as follows:

Surveillance
Cancer surveillance is the systematic collection, analysis, and use of
cancer data. Information obtained through surveillance measures is
critical for directing effective cancer prevention and control
programs (CDC, 2001). Primary surveillance measures include
cancer registries and several national and regional/state surveys.
Cancer registries (NPCR, SEER) implement and maintain
information systems designed to collect and manage data on each
newly diagnosed case of cancer. National surveys, such as the NHIS
and BRFSS, provide information on health attitudes, beliefs, and
behaviors that could be used to help understand issues related to all
stages of cancer survivorship.

Applied Research
Cancer survivorship research in a public health context would focus
efforts on applying our knowledge of cancer and issues survivors face
to the development of appropriate interventions. Understanding

IV. Surveillance and Applied Research 27

Prioritized needs for these components and suggested strategies
for addressing them are presented in the following section.

B. Prioritized Needs and Suggested Strategies

1. Enhance the existing surveillance and applied
research infrastructure.
Increasing the capacity of surveillance systems to capture information
on health topics of interest can lead to a better understanding of
diseases and the people affected by them. Effective survivorship
research is dependent upon the integration and interaction of many
information sources that serve as a strong and comprehensive
infrastructure for study. A surveillance system that provides data on
the long-term effects of cancer is critical to advancing survivorship.
This need is described in detail in Section III of this National Action Plan.

2. Identify factors associated with ongoing health concerns of
cancer survivors.
As described in Section I, only within the past two decades have
research and knowledge demonstrated that cancer is a disease a
person can survive for many years after treatment. With their
successful survival from cancer diagnosis and treatment, survivors are
often faced with ongoing health concerns, such as heart problems,
major disabilities, lymphedema, infertility, and others (NCI,
2002). Although there is understanding of the types of health
problems cancer diagnosis and treatment may cause immediately, less
is known about the long-term effects and how different people are
affected by the services they receive. Some people may be prone to
certain types of complications or long-term difficulties, but little is
known that can help prevent or educate survivors on avoiding these
problems. The extent to which diagnosis and treatment of cancer
may impact the chances that a survivor will later develop other,
secondary diseases is also unknown. Assessments of the potential for
these problems can help guide delivery of health services to prevent
or encourage early detection of other cancers and health
complications (e.g., diabetes, heart disease) and thereby improve the
quality of life for survivors. In addition, knowing the characteristics
of survivors who are more prone to develop ongoing complications

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 28

can help researchers, policy and decision makers, program
managers, and others to direct the development and implementation
of survivorship services and programs that will address specific needs.
Strategies to address this need include the following:

• Initiate research studies to identify characteristics
associated with certain types of cancer and/or secondary
health concerns.

• Identify modifiable behaviors (e.g., limited physical activity,
poor eating habits) that can be targeted with interventions to
reduce the likelihood of additional health problems.

• Once more is known about which characteristics render
survivors susceptible to health problems (e.g., different age
groups), develop primary prevention education programs to
inform survivors about their susceptibility and any behavioral
changes they can make to reduce their risk.

3. Determine programs and services that best address the needs of
cancer survivors.
Once more is understood about the health concerns survivors may
face—particularly those that occur long after treatment ends—and the
groups of survivors most susceptible to them, programs and services
can be delivered to maximize the chances of optimum health among
survivors during each stage of living with, through, and beyond
cancer. These programs and services can include providing adequate
screening for cancer recurrence (e.g., more frequent follow-up
screening exams for those diagnosed with screen-detectable cancers
than is recommended for the general population), follow-up
surveillance of health concerns (e.g., frequent testing for heart
problems among survivors of childhood cancers [IOM, 2003]),
psychological and/or support group services, planning for possible
infertility, and additional services that can be made strategically
available to those most susceptible to recurring problems. More
needs to be understood about the types of programs and services to
provide survivors and the point in time at which these interventions
would have the greatest positive impact. Importantly, the
characteristics of those survivors most likely to benefit from delivery
of developed services need to be identified. Strategies to meet this
need include the following:

• Gain a better understanding of how cancer survivors interact
with the health care system by conducting national surveys
(e.g., NHIS, BRFSS) to delineate the services delivered,
usage pattern, and any problems in these areas.

IV. Surveillance and Applied Research 29

• Enhance collaborative efforts among academic researchers
and state health departments to develop research projects to
increase the body of knowledge about the care and services
that can be provided to survivors to reduce susceptibility to
additional health problems.

• Identify, evaluate, and disseminate findings of the most
effective models of survivorship care.

• Incorporate lessons learned from this body of knowledge
into state comprehensive cancer control plans.

4. Conduct research on preventive interventions to evaluate their
impact on issues related to cancer survivorship.
Preventive interventions are those programs, activities, and services
that identify areas of behavior that can be changed to reduce cancer
recurrence and promote healthy lifestyles. The scope of preventive
interventions includes, but is not limited to, reducing tobacco and
alcohol use and sun exposure; improving nutrition, mental health,
and early detection or follow-up, such as survivor self-advocacy; and
increasing physical activity. This work is important not only for
preventing other cancers and diseases but also for reducing cancer
recurrence. Specific strategies for conducting this research include
the following:

• Develop an inventory of existing preventive interventions.
• Evaluate programs in different public health settings to

determine the effectiveness of a particular intervention and
establish best practices for cancer survivors.

• Identify gaps in existing interventions through
evaluation research.

• Develop interventions that address people at highest risk
for developing other cancers and/or secondary
health conditions.

• Conduct cost-effectiveness research of selected interventions.
• Customize communication to specific cancer survivor

populations, with a specific focus on underserved
communities, to increase awareness of available interventions
and resources.

5. Translate applied research into practice.

Translating scientific research into practice is a crucial step in
increasing the quality of life of cancer survivors. Research findings
should be utilized to develop and implement programs and services
that reduce negative health effects and promote long-term health
benefits. In turn, these programs will benefit cancer survivors by

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 30

enhancing the health care services that they receive. The following
strategies would begin to address this need:

• Incorporate cancer survivorship as an issue to address in the
Guide to Community Preventive Services (Truman et al.,
2000). This guide provides recommendations on preventive
interventions that can be used in a community setting.

• Develop tools/methods for translating research findings so
that the general public can understand and apply the
knowledge to their everyday life.

• Use research findings to educate cancer survivors and others
( including providers, organizations, and advocates) on
survivorship issues.

• Disseminate research findings to health care professionals
and survivors through public health and other organizations,
using a variety of venues (e.g., Internet, mail).

IV. Surveillance and Applied Research 31

Section IV Summary:

Surveillance and Applied Research

1. Enhance the existing surveillance and applied research infrastructure.

2. Identify factors associated with ongoing health concerns of
cancer survivors.

3. Determine programs and services that best address the needs of
cancer survivors.

4. Conduct research on preventive interventions to evaluate their impact on
issues related to cancer survivorship.

5. Translate applied research into practice.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 32

Daniel, Two-time Lymphoma Survivor

“Survivorship is far more than living through cancer
treatment – it’s who I am.”

V. COMMUNICATION, EDUCATION, AND TRAINING

A. Goals

The ever-growing population of cancer survivors requires new
information that affects not only survivors and their families but also
health care providers and the public at large. These needs can be met
through effective communication, education, and training efforts
aimed at increasing awareness of cancer survivorship issues. These
issues include the importance of effective prevention or management
of secondary health concerns, appropriate management of cancer,
ability to maintain adequate health coverage, adequate post-
treatment care, and quality-of-life strategies for those at all stages of
cancer survivorship. Goals in communication, education, and
training include the following:

• Structure existing and develop new messages about cancer
survivorship to reach three broad audiences: the public,
cancer survivors, and health care providers.

• Tailor the content and delivery of these existing and/or
developed messages for subgroups (e.g., culturally diverse
groups, various health care professionals) within each of the
three main audiences.

• Use factual, consistent, culturally appropriate language
and information.

For the purposes of cancer survivorship, the topic areas are
defined here and in Section II as follows:

Communication with the Public
Communication with the general public and policy or decision
makers about the issues surrounding cancer survivorship aims to
create a societal understanding and acceptance of the growing
population of cancer survivors and the issues they face.

Survivor Education
Education of cancer survivors includes provision of information
tailored to the particular stage of survivorship. Such educational
interventions may be most appropriate during the first 5 years after
diagnosis as this is the time when many of the challenges associated
with the adjustment to survivorship occur (Mullan, 1984).

Provider Training
Health care provider training aims to ensure that providers are aware
of the medical and other special needs of cancer survivors so they can

V. Communication, Education, and Training 35

offer the spectrum of services available to enhance quality of life
throughout survivorship and refer survivors to these services as
appropriate.

Prioritized needs for these components and suggested strategies
for addressing them are presented in the following section.
B. Prioritized Needs and Suggested Strategies

One aim of communication with the public is to dispel the myth
that cancer is an inevitably disabling or fatal disease (Leigh & Clark,
1998). This misconception may lead to fear and discrimination
that creates a difficult environment for survivors. For example,
25% of cancer survivors experience some form of employment
discrimination based on their medical history (Hoffman, 1991).
This may come in the form of demotions, reduction or elimination
of benefits, or may manifest itself in communications or
relationships with coworkers (Hoffman, 1991).

The goal of communication with the public about cancer
survivorship is to create societal understanding and acceptance of
issues affecting survivors. Those developing public education
campaigns need to take into account variations in messages and
materials relating to cancer survivorship among different segments
of the population. Organizations and agencies that disseminate
information about cancer survivorship could partner together in
these efforts to leverage resources and ensure the consistent and
efficient delivery of cancer survivorship information.

Although communication with the general public regarding cancer
survivorship issues is important, cancer survivors and their families
need specific information. Survivors’ educational needs vary
depending on their stage of survivorship. Potential areas to be
addressed in survivor-focused education include issues surrounding
medical care after treatment, both for the first 5 years after diagnosis
and the need for long-term care and/or prevention; prevention of
secondary cancers and other health concerns; physical aftereffects
and complications of cancer and cancer treatment; psychological and
social effects of cancer diagnosis and treatment; and practical
matters, such as employment and insurance coverage. An example of
educational materials designed to address such issues is the Facing
Forward Series, a three-part series published by NCI, designed to
educate and empower cancer survivors as they face the challenges
associated with life after cancer treatment. Other publications,
including numerous books, such as Lance Armstrong’s It’s Not About

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 36

the Bike (Armstrong & Jenkins, 2001), provide insight into the
personal side of the experience of survivorship.

Health care providers play an important role in the care of cancer
survivors, not only by providing diagnostic and treatment services
but also by referring survivors to services that address physical,
psychosocial, and economic needs throughout the span of
survivorship. In many cases, however, providers may be unaware of
survivors’ specific needs and how they might play a role in facilitating
access to services to meet these needs. Support and education
program providers need to communicate with health care providers
to ensure that survivors are receiving referrals to services designed to
enhance quality of life throughout the stages of cancer survivorship
and address their specific needs and issues in a timely manner.

1. Develop strategies to educate the public that cancer is a chronic
disease that people can and do survive.
Despite significant reductions in cancer-related mortality, myths
and misinformation about a cancer diagnosis persist (e.g., “diagnosis
of cancer means certain death” as in Section I.C.). Accurate,
culturally appropriate information is needed to counteract these
misconceptions and increase understanding and acceptance of issues
affecting cancer survivors. Key strategies for addressing this need
include the following:

• Convene a Task Force to identify existing educational
information, and encourage partnerships to avoid duplication
of efforts in developing new educational materials.

• Enhance a centralized information resource center, such as
a clearinghouse (e.g., print, on-line), to provide access to
consistent, scientifically valid, culturally appropriate health
communication information.

• Promote the centralized information resource through a
variety of media, including public service announcements for
television, print, and the Internet.

• Promote the concept of survivorship as a chronic condition
that people can live with and not necessarily die from.

2. Educate policy- and decision-makers about the role and value
of long-term follow-up care, addressing quality-of-life issues and
legal needs, and ensuring access to clinical trials and ancillary
services for cancer survivors.
Acknowledgment and understanding of the long-term effects of
cancer can enable survivors, caregivers, and health care providers to
anticipate and deal with these effects. Increased understanding may

V. Communication, Education, and Training 37

also enable enactment of appropriate policies to ensure that survivors
receive needed follow-up care. Well-informed policy and decision
makers can advocate for changes in and funding of services and
additional research in these areas. Key strategies for addressing this
need include the following:

• Identify potential policy and decision makers and establish
mechanisms to educate them on survivorship issues.

• Catalogue and characterize existing policies in order to
identify gaps in survivor needs to address.

• Identify partnerships with those with an interest in national
and/or state policies.

• Develop and implement specific strategies to educate each
identified policy and decision maker group (e.g., legislators;
local, state, and national regulators; health service
administrators; advocacy groups; community-based
organizations; health-related industries; insurance industry;
pharmaceutical industry).

3. Empower survivors with advocacy skills.

Cancer survivors are faced with extremely difficult medical decisions
at each stage of living with, through, and beyond cancer. Because
medical decisions are such important component to ongoing
improvement of quality of life among cancer survivors, the topic of
“informed decision making” is presented in detail in the cross-
cutting section (Section III).

4. Develop, test, maintain, and promote patient navigation
systems for people living with cancer.
Patient navigation systems attempt to provide a mechanism to
enhance the delivery of optimum care. This need is also summarized
in Section III.

5. Teach survivors how to access and evaluate
available information.
Cancer-related information is available from a multitude of
organizations. However, this information may be inconsistent in the
message content, culturally inappropriate, and/or difficult to access.
A system to evaluate the validity of available cancer survivorship
information is needed that can be linked to other, reliable
information sources. Key strategies for addressing this need include
the following:

• Develop a standardized system to assess the adequacy of
available survivorship information.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 38

• Develop resources to assist survivors in assessing survivorship
information in a variety of formats (e.g., CD-ROM,
pamphlets, Web pages, video).

• Disseminate the above-mentioned resources through a
variety of distribution points (e.g., medical offices, cultural
or faith-based community organizations, support groups,
national and local associations) and through a centralized
database that can be linked to other sources of
reliable information.

• Provide technical assistance to groups whose materials do not
meet the established evaluation criteria (i.e., do not maintain
scientific validity) and enhance the quality of
materials/products.

6. Educate health care providers about cancer survivorship
issues from diagnosis through long-term treatment effects and
end-of-life care.
Health care providers include all clinical, community, and public
health professionals who potentially affect the health and well-being
of people living with cancer. Although the specific message will vary
for different types of providers, all should understand the impact a
cancer diagnosis has on quality of life, the common myths and
misperceptions about cancer and accurate information to dispel
them, prevention strategies for secondary illnesses, appropriate
management strategies, referral sources (i.e., where and when to
refer), sources of support, and long-term treatment effects and end-
of-life care. Key strategies for addressing this need among providers
include the following:

• Establish educational forums on survivorship in partnership
with professional organizations.

• Educate health professionals and para-professionals in local
medical communities through grand rounds, tumor board
meetings, and other venues.

• Partner with advocacy groups to visit community practices
and observe/educate local providers about implications of
and opportunities for improving quality of life.

• Incorporate survivorship curricula into professional/para-
professional training programs.

• Develop continuing education training in survivorship to
deliver to a variety of health care professionals (e.g.,
internists, nurses).

V. Communication, Education, and Training 39

Section V Summary:
Communication, Education, and Training

1. Develop strategies to educate the public that cancer is a chronic disease
people can and do survive.

3. Empower survivors with advocacy skills.

4. Develop, test, maintain, and promote patient navigation systems for
people living with cancer.

5. Teach survivors how to access and evaluate available information.

6. Educate health care providers about cancer survivorship issues from
diagnosis through long-term treatment effects and end-of-life care.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 40

Mason, Wilms’ Tumor Survivor

“Survivorship has shown me that cancer was
really hard, but it was something I just had to
go through.”

VI. PROGRAMS, POLICIES, AND INFRASTRUCTURE

A. Goals

This section describes prioritized needs and recommended strategies
for programs, policies, and infrastructure at national, state, and
community levels to advance cancer survivorship within public health
settings. Goals include the following:

• Develop a continuum of health programs and services that
addresses both cancer treatment needs and primary,
secondary, and tertiary prevention of additional health
concerns for cancer survivors.

• Enhance supportive policies that establish an environment to
comprehensively address cancer survivorship issues.

• Establish a system of services that enhances and creates
partnerships among public and private health agencies.

Programs, policies, and infrastructure are means for effecting
change and are defined here and in Section II.C. as follows:

Programs
Programs are the actual implementation of specific interventions at
the national, state, and community levels to address a public health
problem (NAAP, 1999). Medical, psychosocial, legal, and financial
issues could be addressed by programs that are comprehensive in
scope and encompass care for each stage of cancer survivorship.

Policies
Policies include legislation, regulations, ordinances, guidelines,
and norms that establish an environment conducive to program
implementation and other changes specific to survivorship (NAAP,
1999). These policies may be implemented at the national, state,
organizational, and community levels in an effort to advance
public health.

VI. Programs, Policies, and Infrastructure 43

and voluntary health organizations directly influence access to care
and provision of clinical and community services (NAAP, 1999).
Prioritized needs for these components and suggested strategies
for addressing them are presented in the following section.
B. Prioritized Needs and Suggested Strategies

It is through programs, policies, and infrastructure that public
health can effect change in terms of the delivery of services for cancer
survivors. Survivorship initiatives could be embedded in all services
related to the continuum of care, including cancer prevention,
screening and early detection, diagnosis and treatment,
rehabilitation, and palliative and end-of-life care. These programs
may be offered through a variety of sources, such as comprehensive
cancer centers, advocacy organizations, or community-based
organizations (Tesauro et al., 2002). Policies may be implemented
at the national, state, and community levels to create an environment
supportive of advancing cancer survivorship in the realm of public
health. An example of an existing policy that is relevant to cancer
survivorship is the Cancer Survivors’ Bill of Rights© (Spingarn,
1999). The Bill was written by a cancer survivor for cancer survivors
and denotes the shift in a survivor’s role from passive patienthood to
proactivity (Leigh & Stovall, 1998). This document serves as an
example of how an advocacy organization can advance policy in the
realm of cancer survivorship.

Exploring ways that public health policy can be developed to
address the needs of cancer survivors is an important next step in
action planning. To ensure that cancer survivorship innovations
reach the people who need them most, states, territories, and tribal
organizations need to build and maintain appropriate infrastructure.
Sufficient scientific and programmatic infrastructure will enable
health agencies to build the necessary coalitions and partnerships to
translate research into public health programs, practices, and services
for cancer survivors. CCC Programs (see Section I.D.) hold promise
as the foundation for developing this infrastructure specific to
cancer prevention and control.

1. Develop, test, maintain, and promote patient navigation or
case management programs that facilitate optimum care.
Patient navigation is a tool that can be used to ensure that survivors
understand their care and their process of care and enhance the
delivery of optimum care. In these programs, health professionals or
highly trained patient liaison representatives coordinate health care

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 44

for patients and assist them in navigating the health care system. This
need is discussed in detail in Section III.

2. Develop and disseminate public education programs that
empower survivors to make informed decisions.
No one medical answer is right for everyone. Cancer survivors are
faced with extremely difficult medical decisions at each stage of
living with, through, and beyond cancer. This need is presented in
Section III.

3. Identify and implement programs proven to be effective (i.e.,
best practices).
In the public health field, “best practices” refer to programs that
have been identified as effective through a standardized process using
commonly agreed-upon criteria for rating their success (USDHHS,
2003). These programs have been shown to be successful through
measurable outcomes. Efforts are under way within public health to
systematically identify these programs and disseminate them to a
broader audience for replication (USDHHS, 2003). Within the
realm of cancer survivorship, there is much to learn about the best
practices of programs that address needs for people living with,
through, and beyond cancer. Specific strategies to achieve the goal of
identifying and disseminating best practices for cancer survivorship
include the following:

• Establish quantifiable criteria to determine which
programs are among the best practices for addressing cancer
survivor needs.

• Identify best practices based on agreed-upon criteria and
rank order programs accordingly.

• Identify gaps in survivorship research and provide funding to
test new models and approaches.

• Establish a “clearinghouse” of information (e.g., Cancer
Control PLANET, CIS) using existing mechanisms for
those programs identified as best practices.

• Promote this “clearinghouse” and otherwise disseminate
information to programs, survivors, health care providers,
and others. Use this clearinghouse to connect survivors to
resources specific to their needs.

4. Implement evidence-based cancer plans that include all stages
of cancer survivorship.
Through the CDC’s funding of CCC Programs (see Section I.D.),
states are developing cancer control plans to comprehensively address

VI. Programs, Policies, and Infrastructure 45

this disease. States launched these Programs in collaboration with
private and not-for-profit entities to assure appropriate expertise
and to maximize the impact of limited resources on cancer control
efforts. Public health agencies are using this support to establish
broad-based cancer coalitions, assess the burden of cancer,
determine priorities for cancer prevention and control, and develop
and implement comprehensive plans. Through these and other
activities, work is under way to identify those efforts that are
grounded in sound scientific knowledge, or are “evidence based.”
Evidence-based efforts in public health rely on a rigorous process
where strategies to address a health issue are assessed to identify those
with the highest quality scientific evidence of successful outcomes.
Too often, rigorous evidence is lacking upon which to recommend
strategies and interventions to address important goals and
objectives. Most states have included issues related to cancer
survivorship in their plans but have not necessarily included efforts
that are evidence-based or that address needs for each stage of living
with, through, and beyond cancer. There is a need to identify
evidence-based initiatives that can be systematically incorporated into
state cancer control efforts. The following strategies provide specific
guidance to meet this need:

• Identify key leaders and experts in cancer survivorship in
every state (especially survivors) to create a network of
individuals to ensure that survivorship issues are being
addressed through each cancer plan.

• Educate those involved in planning and developing state
cancer plans on the importance of and issues related to
cancer survivorship.

• Evaluate survivorship programs and publish and
disseminate results.

• Link CCC Program and other funding so that cancer plans
are required to comprehensively address survivorship.

5. Establish clinical practice guidelines for each stage of cancer
survivorship.
Clinical practice guidelines are defined by the IOM as “…systematically
developed statements to assist practitioner and patient decisions for
specific clinical circumstances” (IOM, 1992). These guidelines
summarize the collective research on outcomes pertaining to one
disease. This need is presented in detail in Section III.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 46

6. Promote policy changes that support addressing cancer as a
long-term, chronic disease.
Historically, cancer was a disease that people often did not survive
(see Section I.A.). Health care focused on making the patient
comfortable during the last stages of cancer progression; few
treatment options were available. Now, many more treatment
options are available, and people survive with cancer for many years.
The medical model tends to focus more on cancer survivors during
their “acute” stages of cancer and less on the “extended” and
“permanent” stages (Mullan, 1985) and not on post-treatment or
long-term issues. Policies need to effectively address cancer
survivorship for all those living with, through, and beyond cancer.
Strategies for effecting this change include the following:

• Develop and disseminate public education materials to
educate policy makers, health professionals, and survivors on
the stages of cancer survivorship.

• Encourage insurance carriers and health plan administrators
to provide for post-treatment and long-term follow-up
services for cancer survivors.

• Address the terminology used in various settings, such as in
formal policy and the media, at health care organizations and
among providers and insurance agencies, to modify policies
to better reflect the stages of cancer survivorship.

7. Develop infrastructure to obtain quality data on all cancer
management activities to support programmatic action.
A great deal is unknown about cancer survivorship, particularly
in terms of the long-term effects of cancer diagnosis and treatment.
For that reason, much work needs to be done to create
comprehensive databases to collect information on survivors and
conduct research on issues related to survivorship. This need is
discussed in detail in Section III.

VI. Programs, Policies, and Infrastructure 47

Section VI Summary:
Programs, Policies, and Infrastructure

1. Develop, test, maintain, and promote patient navigation or case
management programs that facilitate optimum care.

2. Develop and disseminate public education programs that empower
survivors to make informed decisions.

3. Identify and implement programs proven to be effective
(i.e., best practices).

4. Implement evidence-based cancer plans that include all stages of
cancer survivorship.

5. Establish clinical practice guidelines for each stage of cancer survivorship.

6. Promote policy changes that support addressing cancer as a long-term,
chronic disease.

7. Develop infrastructure to obtain quality data on all cancer management
activities to support programmatic action.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 48

Bart, Cancer Survivor

“Survivorship has given me a more complete
sense of the gift of life.”

VII. ACCESS TO QUALITY CARE AND SERVICES

A. Goals

This section describes prioritized needs and recommended strategies
to address access to quality care and services for people living with,
through, and beyond cancer. In relation to cancer survivorship,
quality care and services include access to quality treatment, effective
pain and symptom management, and quality end-of-life care and
services. Progress in these key areas is necessary to assure quality
service provision for those living with cancer. Goals in this area
include the following:

• Establish clinical care guidelines to ensure availability of
high-quality care for all cancer survivors.

• Provide access to high-quality care throughout every stage of
cancer survivorship.

• Educate survivors on available resources and strategies to
enhance informed decision making.

• Ensure coordinated care among all health care professionals
involved in delivering services.

For the purposes of cancer survivorship, access to quality
treatment, effective pain and symptom management, and quality
end-of-life care are defined here and in Section II.C. as follows:

Access to Quality Treatment
Cancer treatment is complex and differs for each individual based on
his or her specific situation and needs. All cancer survivors should
have timely access to the latest and most effective treatments available.
This would include clinical trials, if appropriate.

Pain and Symptom Management
An important part of cancer treatment is the management of pain
and other symptoms associated with both disease and treatment. The
goal of pain and symptom management is to provide relief so that
survivors can tolerate the diagnostic and therapeutic procedures
needed to treat their cancer and live comfortably throughout each
stage of living with, through, and beyond cancer.

End-of-Life Care
Issues facing survivors and their families during end-of-life are
complex and serious. Appropriate end-of-life care affirms life and
regards dying as a normal process, neither hastening nor postponing
death. The goal of end-of-life care is to achieve the best possible

VII. Access to Quality Care and Services 51

quality of life for cancer survivors. Although many survivors live
many years beyond their diagnosis, the needs and desires of those
who are in the process of dying must be addressed.

Prioritized needs and suggested strategies for addressing access to
quality care and services are presented in the following section.

B. Prioritized Needs and Suggested Strategies

Quality cancer care means assuring that survivors have access to
evidence-based and appropriate treatment and services delivered
in a timely and technically competent manner, with good
communication, shared decision making, and cultural sensitivity
across the continuum of care and throughout the remainder of life.
Accountability is an important aspect of quality care (IOM, 1999).
Health care providers must be accountable for professional
competence, legal and ethical conduct, and accessibility of services
(Emanuel & Emanuel, 1996).

Prioritized needs and suggested strategies to address access to
quality care and services include the following:

1. Develop, test, maintain, and promote a patient navigation
system for cancer survivors.
Patient navigation is a tool that can be used to ensure that survivors
understand their care and their process of care as well as to enhance
the delivery of optimum care. This need is described in detail in
Section III.

2. Educate decision-makers about economic and insurance
barriers related to health care for cancer survivors.
Survivorship advocates support the position that cancer survivors
should have access to the latest and most effective treatments available
and that access to these treatments should be based on the type of care
needed and not on the cost of care. Unfortunately, there are many
barriers to achieving this ideal of comprehensive access to quality care.
The first step toward this ideal is to educate decision makers about the
needs of cancer survivors and the financial barriers affecting cancer
survivors’ access to quality care. Strategies to help assure that decision
makers are adequately informed include the following:

• Convene a meeting of health care providers, cancer
survivorship experts, researchers, and programmatic staff
with the goal of developing strategies to educate policy makers
about the unmet needs for cancer treatment of uninsured
and underinsured survivors.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 52

• Identify successful policy and legislative language as
examples for state programs (and others), and identify key
stakeholders (e.g., legislators, governors) needed to improve
access to high quality treatment and other post-treatment
follow-up services.

• Survey and analyze the insured population to determine the
impact the individual’s level of coverage has on timely access
to care and receipt of follow-up care.

• Develop educational opportunities for decision makers of
insurance carriers and health plans regarding policies that
promote access to quality cancer care.

3. Establish and /or disseminate guidelines that support quality
and timely service provision to cancer survivors.
In their statement, “Principles of Quality Cancer Care,” the Cancer
Leadership Council emphasized that all people with cancer need to
have timely access to care that is based on the best available evidence
(NCCS, 2003). A key strategy for meeting this need is to develop a
process for establishing clinical care guidelines for each stage of
cancer survivorship. This need is discussed in detail in Section III
of this National Action Plan.

4. Assess and enhance provision of palliative services to
cancer survivors.
The goal of palliative care is to achieve the best possible quality of life
for survivors and their families by controlling pain and other
symptoms and addressing psychological and spiritual needs
throughout each stage of living with, through, and beyond cancer.
Strategies to assess and enhance provision of palliative services to
cancer survivors include the following:

• Collect baseline quantitative and qualitative data to assess
the current status and location of palliative service provision,
and characterize the experiences of survivors, their
caregivers, and providers in relation to palliative care.

• Provide professional and public education to teach people
about palliative care, how health care providers should
administer such services, and how survivors and their
caregivers can advocate for this care.

• Establish regulatory policies for licensing and agency
responsibility for palliative care oversight.

VII. Access to Quality Care and Services 53

• Provide training for medical personnel on the topic of
substance abuse to help alleviate fears of misuse of pain
medications and increase professional acceptance of
prescribing pain control medications to cancer survivors.

• Develop targeted therapies to manage cancer pain so that
concerns about unintended consequences of pain medication
administration can be avoided.

5. Establish integrated multidisciplinary teams of health
care providers.
Cancer treatment is complex and differs for each individual based on
his or her specific situation and needs. To assure that each cancer
survivor receives appropriate and comprehensive treatment, these
efforts should be planned, coordinated, and delivered by a
multidisciplinary team of providers. Strategies to establish such
multidisciplinary teams include the following:

• Create centers of excellence (using pediatric cancer centers as
a model) that provide comprehensive care to cancer survivors
especially for rarer forms of cancer.

• Formulate policies that will improve access to services
provided to survivors from an appropriate provider
of choice.

• Promote and provide increased access to clinical trials and
longitudinal follow-up through the centers of excellence.

• Develop survivor-oriented Web sites to guide follow-up after
completion of primary treatment.

• Develop mechanisms (e.g., password-protected Web forum,
telephone, mail) for survivors to have ongoing routine
follow-up with their multidisciplinary team after primary
treatment. Follow-up should be annual at a minimum.

• Develop survivorship programs through appropriate partner
organizations (e.g., the American College of Surgeons
Commission on Cancer, NCCS) to provide professional
education on cancer survivorship.

• Ensure survivor access to symptom management/palliative
care/supportive teams.

• Review management plans from other chronic disease models
(e.g., diabetes) and use these as a basis to develop integrated
multidisciplinary management plans for cancer survivorship.

• Ensure that integrated multidisciplinary management is
available to survivors across the continuum of care.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 54

Section VII Summary: Access to Quality
Care and Services

1. Develop, test, maintain, and promote a patient navigation system for
cancer survivors.

2. Educate decision-makers about economic and insurance barriers related
to health care for cancer survivors.

3. Establish and /or disseminate guidelines that support for quality and
timely service provision to cancer survivors.

4. Assess and enhance provision of palliative services to cancer survivors.

5. Establish integrated multidisciplinary teams of health care providers.

VII. Access to Quality Care and Services 55

Octavio, Cancer Survivor

“Survivorship means coming out of my cancer
experience as a whole person and being able to
make it an important and positive part of
who I am.”

VIII. IMPLEMENTATION

A. Indicators

In order to evaluate the extent to which the long-term goals of the
National Action Plan are reached, establishing and monitoring
measures to demonstrate progress toward obtaining those goals are
critical. Developing indicators provides a benchmark to gauge success
and identify movement toward cancer survivorship objectives.
Important indicators to measure include those related to process,
such as whether initiatives are being delivered as planned, and
outcomes, such as if the survivor’s life is improving. Eventually,
preliminary indicators can be made into measurable objectives as
part of a comprehensive evaluation plan. Examples of some
indicators that organizations or individuals could use for activities
summarized in this Plan might include the following:

Surveillance and Applied Research
• Increase the number of cancer registries that are able to

follow cancer survivors over time.
• Create a standardized set of items for the collection and

analysis of cancer survivorship data, including quality of life,
at the national level.

• Assess the feasibility of obtaining population-based
cancer survivorship data using cancer registries and other
data sources.

• Develop research initiatives to quantify health concerns of
cancer survivors.

• Increase the number of collaborative efforts between
academic researchers and state health departments related to
cancer survivors.

• Determine the extent to which these collaborative efforts
result in useful and applicable findings.

Communication, Education, and Training
• Increase health care professionals’ and the general public’s

knowledge of the burden of cancer survivorship and issues
faced by survivors.

• Increase the amount of media time devoted to cancer
survivorship compared with other health issues.

• Increase the number of trainings on cancer survivorship for
health professionals and para-professionals.

VIII. Implementation 57

Programs, Policies, and Infrastructure
• Increase programmatic resources for cancer survivorship over

a period of 5 years, and assess trends in funding levels across
private and public sector programs.

• Increase the number of state cancer plans and CCC
Programs with cancer survivorship components.

• Track the number of policies related to cancer survivorship at
the local, state, and national level.

• Increase the number of health insurance carriers providing
for post-treatment and long-term follow-up services,
including specialty care, for cancer survivors.

Access to Quality Care and Services
• Increase the number of survivors receiving pain control and

other support services throughout each stage of cancer
survivorship, from diagnosis through end-of-life.

• Increase research to evaluate the effectiveness of patient
navigation systems on improving cancer survivors’ quality
of life and disseminate those results to the public
health community.

• Continue to improve the 5-year survival rates for all cancers.

B. Conclusion

With one-third of Americans estimated to be diagnosed with cancer
in their lifetime, the individual and societal burden of cancer is
clear. A National Action Plan for Cancer Survivorship: Advancing
Public Health Strategies describes a variety of proven public health
interventions as well as new strategies aimed to improve the quality of
life for cancer survivors, their families, friends, and caregivers. By
using the National Action Plan as a guide as well as a call to action,
the public health community can initiate and sustain changes that
will lead to improved quality of life among the millions of people
living with, through, and beyond cancer. The ambitious approaches
outlined in this National Action Plan will be most feasible if public
health organizations and individuals pursue the strategies that are
most applicable to their mission. Next steps for implementing this
National Action Plan will be for organizations to prioritize the needs
they can address and effectively implement initiatives so that progress
over the next 5 years in advancing cancer survivorship within the
realm of public health can be realized.

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 58

Liz, Cancer Survivor

“Survivorship is life.”

EXPLANATIONS OF PHRASES AND TERMS

Note: Listed below are explanations of phrases and terms that appear
in the National Action Plan as bold text.

Access to quality care and services
Quality cancer care means ensuring that survivors have access to
evidence-based (or proven to be successful) appropriate treatment.
Services should be delivered in a timely and technically competent
manner, utilizing good communication, shared decision making
between the cancer survivor and health care providers, and in a
cultural sensitivity manner across the continuum of care and
throughout the remainder of life (IOM, 1999).

Access to quality treatment
Cancer treatment is complex and differs for each individual based on
his or her specific situation and needs. Cancer survivors should have
timely access to the latest and most effective treatments available.
This would include clinical trials, if appropriate (Cancer Leadership
Council, 2003).

Acute stage
The “acute” stage of survival begins with diagnosis and spans the time
of further diagnostic and treatment efforts (Mullan, 1985).

Ancillary services
Professional services provided by a hospital or other inpatient health
program. These may include x-ray, drug, laboratory, or other
services (CMS, 2003).

Applied research
Use of surveillance data to better understand the extent to which
interventions effectively address survivor needs and provide findings
that can guide further development of initiatives.

Best practices
Programs that have been identified as effective through a
standardized process using commonly agreed-upon criteria for
rating their success (USDHHS, 2003).

Cancer
A term for diseases in which abnormal cells divide without control
(NCI, 2003c).

Cancer Control PLANET
Plan, Link, Act, Network with Evidence-based Tools: a Web portal
resource with links to resources for comprehensive cancer control
(Cancer http://cancercontrolplanet.cancer.gov).

Cancer survivors
People who have been diagnosed with cancer and the people in their
lives who are affected by their diagnosis, including family members,
friends, and caregivers (LAF, 2003).

Case management
A process used by a doctor, nurse, or other health professional to
manage a patient’s health care. Case managers make sure that people
receive needed services and track the use of facilities and resources
(CMS, 2003).

Chronic disease
A disease that has one or more of the following characteristics: is
permanent; leaves residual disability; is caused by nonreversible
pathological alteration; requires special training of the patient for
rehabilitation; or may be expected to require a long period of
supervision, observation, or care (DEHA, 2003).

Clinical practice guidelines
Systematically developed statements designed to assist practitioner and
patient decisions for specific clinical circumstances (IOM, 1992).

Clinical trials
Research studies, where patients help scientists find the best way to
prevent, detect, diagnose, or treat diseases (NCI, 2003c).

Communication with the public
Communication with the general public and policy or decision
makers about the issues surrounding cancer survivorship, which aims
to create a societal understanding and acceptance of the growing
population of cancer survivors and the issues they face.

Comprehensive cancer control
An integrated and coordinated approach to reducing cancer
incidence, morbidity, and mortality through prevention (primary
prevention), early detection (secondary prevention), treatment,
rehabilitation, and palliation (CDC, 2003b).

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 62

End-of-life care
Affirms life and regards dying as a normal process, neither hastening
nor postponing death while providing relief from distress and
integrating psychological and spiritual aspects of patient care. The
goal of end-of-life care is to achieve the best possible quality of life
for cancer survivors by controlling pain and other symptoms and
addressing psychological and spiritual needs (Hospice, 2003).

Extended stage
The “extended” stage of survival begins when the patient goes into
remission or has completed treatment (Mullan, 1985).

Guide to Community Preventive Services
The Community Guide summarizes what is known about the
effectiveness, economic efficiency, and feasibility of interventions to
promote community health and prevent disease. The Task Force on
Community Preventive Services makes recommendations for the use
of various interventions based on the evidence gathered in the
rigorous and systematic scientific reviews of published studies
conducted by the review teams of the Community Guide. Findings
from the reviews are published in peer-reviewed journals and also
made available on the internet at www.thecommunityguide.org.

Health care provider
A person who is trained and licensed to give health care. Also, a place
licensed to give health care. Doctors, nurses, hospitals, skilled nursing
facilities, some assisted living facilities, and certain kinds of home
health agencies are examples of health care providers (CMS, 2003).

Healthy People 2010
Healthy People 2010 is a set of health objectives for the nation to
achieve over the first decade of the new century. It can be used by
many different people, states, communities, professional
organizations, and others to help them develop programs to improve
health (USDHHS, 2003).

Incidence
The number of new cases of a disease diagnosed each year (NCI, 2003c).

Indicator
A substitute measure for a concept that is not directly observable or
measurable (e.g., prejudice, substance abuse). Also defined as a
variable that relates directly to some part of a program goal or
objective. Positive change on an indicator is presumed to indicate
progress in accomplishing the larger program objective (PSAP, 2003).

Infrastructure
The systems, competencies, relationships, data and information
systems, skilled workforce, effective public health organizations,
resources, and research that enable performance of the essential
public health services in every community (USDHHS, 2000).

In-kind
Contributions or assistance in a form other than money.
Equipment, materials, or services of recognized value that are
offered in lieu of cash (UCLA, 2003).

Living “beyond” cancer
Refers to post-treatment and long-term survivorship (LAF, 2003).

Living “through” cancer
Refers to the extended stage following treatment (LAF, 2003).

Living “with” cancer
Refers to the experience of receiving a cancer diagnosis and any
treatment that may follow (LAF, 2003).

Lymphedema
A condition in which excess fluid collects in tissue and causes
swelling. It may occur in the arm or leg after lymph vessels or lymph
nodes in the underarm or groin are removed or treated with
radiation (NCI, 2003c).

Metastasis
The spread of cancer from one part of the body to another. A tumor
formed from cells that have spread is called a secondary tumor, a
metastatic tumor, or a metastasis. The plural form of metastasis is
metastases. Metastasized means to spread by metastasis (NCI, 2003c).

Morbidity
A disease or the incidence of disease within a population. Morbidity
also refers to adverse effects caused by a treatment (NCI, 2004).

Pain and symptom management
Pain and symptom management refers to the provision of pain relief
so that patients can tolerate the diagnostic and therapeutic
procedures needed to treat their cancer (Foley, 1999).

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 64

Palliative care
Care given to improve the quality of life of patients who have a
serious or life-threatening disease. Also called comfort care,
supportive care, and symptom management (NCI, 2003c).

Patient navigation
A tool that can be used to ensure that survivors understand their care
and their process of care and enhance optimum care. In these
programs, health professionals and others coordinate health care for
patients and assist them in navigating the health care system
(http://deainfo.nci.nih.gov/advisory/pcp/video-summary.htm).

Permanent stage
The “permanent” stage is defined as a time when the “activity of the
disease or likelihood of its return is sufficiently small that the cancer
can now be considered permanently arrested” (Mullan, 1985, p. 272).

Policies
Policies include legislation, regulations, ordinances, guidelines, and
norms that establish an environment conducive to program
implementation (NAAP, 1999).

Preventive interventions
Programs, activities, and services that identify areas of behavior that
can be changed to reduce cancer recurrence or increase control and
promote healthy lifestyles.

Primary prevention
Measures designed to combat risk factors for illness before an illness
ever has a chance to develop (McGraw-Hill, 2003).

Programs
Programs are the actual implementation of specific interventions at
the national, state, and community levels to address a public health
problem (NAAP, 1999).

Provider training
Health care provider training aims to assure that providers are aware
of the spectrum of services available to enhance quality of life
throughout survivorship so that they may refer survivors to these
services as appropriate.

Public health
Public health practice is the science and art of preventing disease,
prolonging life, and promoting health and well-being (Winslow,
1923). The Institute of Medicine (IOM) has defined the mission of

public health as assuring conditions in which people can be healthy
(1988). Public health’s mission is achieved through the application
of health promotion and disease prevention technologies and
interventions designed to improve and enhance quality of life
(PHFSC, 1994).

Qualitative data
A record of thoughts, observations, opinions, or words
gathered/collected from open-ended questions to which the answers
are not limited by a set of choices or a scale (PSAP, 2003).

Quantitative data
Numeric information that includes such items as type of treatment,
amount of time, or a rating of an opinion on a scale from 1 to 5.
Quantitative data are collected through closed-ended questions,
where users are given a limited set of possible answers to a question
(PSAP, 2003).

Risk
The probability that an event will occur (e.g., that an individual will
become ill or die within a stated period of time or age) (Last, 1995).

Risk factor
Something that may increase the chance of developing a disease.
Some examples of risk factors for cancer include age, a family history
of certain cancers, use of tobacco products, certain eating habits,
obesity, exposure to radiation or other cancer-causing agents, and
certain genetic changes (NCI, 2003c).

Stakeholders
A stakeholder is someone who has a stake in an organization or a
program. Stakeholders either affect the organization/program or are
affected by it (PSAP, 2003).

Surveillance
Primary surveillance measures include cancer registries and several
national surveys. Cancer registries implement and maintain
information systems designed to collect and manage data on cases of
cancer incidence. National surveys, such as the National Health
Interview Survey (NHIS), provide information on health attitudes,
beliefs, and behaviors that could be used to help understand issues
related to cancer survivorship (CDC, 2003b).

Survivor education
The education of cancer survivors includes provision of information
tailored to the particular stage of survivorship (Mullan, 1984).

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 66

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APPENDIX A: PARTICIPATING PARTNERS AND REVIEWERS

Carla S. Alexander
National Hospice & Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
Phone: (410) 328-7129
Fax: (410) 328-4430
E-mail: calexand@medicine.umaryland.edu

Noreen Aziz
National Cancer Institute
6130 Executive Plaza North
Rockville, MD 20852
Phone: (301) 496-0598
Fax: (301) 594-5070
E-mail: na45f@nih.gov

Mark S. Baptiste
New York State Department of Health
Rm 515 Corning Tower
Albany, NY 12237-0675
Phone: (518) 474-0512
Fax: (518) 473-2853
E-mail: msb02@health.state.ny.us

Catherine Bartlett
Lance Armstrong Foundation
P.O. Box 161150
Austin, TX 78716
Phone: (512) 236-8820, ext. 122
Fax: (512) 236-8482
E-mail: catherine@laf.org

Carol Moody Becker
U.S. Conference of Mayors
1620 I Street, NW, 4th Floor
Washington, DC 20006
Phone: (202) 328-3340
Fax: (202) 328-3361
E-mail: becker@hers.com

Nora Beidler
American Society of Clinical Oncology
1900 Duke Street, Suite 200
Alexandria, VA 22314
Phone: (703) 797-1917
Fax: (703) 684-8618
E-mail: beidlern@asco.org

Kim Belloni
Centers for Disease Control and Prevention
2858 Woodcock Boulevard
Atlanta, GA 30341
Phone: (770) 488-3011
Fax: (770) 488-4760
E-mail: ksa1@cdc.gov

Fayruz Benyousef
1020 Balanced Rock Place
Rock Round, TX 78681
Phone: (512) 476-9051, ext. 114
Fax: (512) 472-3073
E-mail: fayruz@balletaustin.org

Jennifer A. Biggy
Congressman Roger Wicker’s Office
2455 Rayburn House Office Building
Washington, DC 20515
Phone: (202) 225-4306
Fax: (202) 225-3549
E-mail: jennifer.biggy@mail.house.gov

Edward Billings
American Cancer Society
901 E Street, NW, Suite 500
Washington, DC 20004
Phone: (202) 661-5720
Fax: (202) 661-5750
E-mail: ted.billings@cancer.org

Bruce L. Black
American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
Phone: (404) 329-7716
Fax: (404) 325-2548
E-mail: bblack@cancer.org

Donald K. Blackman
Centers for Disease Control and Prevention
4770 Buford Highway, NE, MS K55
Atlanta, GA 30341
Phone: (770) 488-3023
Fax: (770) 488-4639
E-mail: dblackman@cdc.gov

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies A-1

Dianah C. Bradshaw
North Carolina Division of Health & Human Services
1915 Mail Service Center
Raleigh, NC 27699-1915
Phone: (919) 715-0119
Fax: (919) 715-3153
E-mail: Dianah.Bradshaw@ncmail.net

Jubilee Brown
University of Texas, M.D. Anderson Cancer Center
1515 Holcombe Blvd., Box 440
Houston, TX 77030
Phone: (713) 792-9599
Fax: (713) 792-7586
E-mail: jurobinso@mdanderson.org

Joanna Bull
Gilda’s Club Worldwide
P.O. Box 297
Rensselaerville, NY 12147
Phone: (518) 797-5255
E-mail: Joanna_bull@yahoo.com

Rita M. Butterfield
Dana-Farber Cancer Institute
44 Binney Street
Boston, MA 02115
Phone: (617) 632-2182
Fax: (617) 632-4858
E-mail: rita_butterfield@dfci.harvard.edu

Molly F. Cade
Ovarian Cancer National Alliance
6444 10th Street, SE
Prior Lake, MN 55372
Phone: (952) 890-8775
E-mail: mfcade@integraonline.com

Carol Callaghan
Michigan Department of Community Health
3423 N. Martin Luther King Blvd.
Lansing, MI 48906
Phone: (517) 335-9616
Fax: (517) 335-9397
E-mail: callaghanc@michigan.gov

Erie E. Calloway
Sisters Network, Incorporated
8787 Woodway Drive, Suite 4206
Houston, TX 77063
Phone: (713) 781-0255
Fax: (713) 780-8998
E-mail: sisnet4@aol.com

Laura Caisley
Centers for Disease Control and Prevention
4770 Buford Highway, NE
Atlanta, GA 30341
Phone: (770) 488-3021
Fax: (770) 488-4760
E-mail: LCaisley@cdc.gov

Ellen E. Casey
Dana-Farber Cancer Institute
44 Binney Street, D326
Boston, MA 02115
Phone: (617) 632-2910
Fax: (617) 632-2473
E-mail: ellen_casey@dfci.harvard.edu

Katie Clarke
Sonnenschein Nath & Rosenthal
1301 K Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 408-6445
Fax: (202) 408-6399
E-mail: kclarke@sonnenschein.com

Janet Collins
Centers for Disease Control and Prevention
4770 Buford Highway, NE, MS K-40
Atlanta, GA 30341
Phone: (770) 488-5402
Fax: (770) 488-5971
E-mail: jlc1@cdc.gov

George Dahlman
The Leukemia & Lymphoma Society
11 Canal Centre #111
Alexandria, VA 22314
Phone: (703) 535-6650 ext. 15
Fax: (703) 535-8163
E-mail: dahlmang@southern.leukemia-lymphoma.org

A-2

Beth Darnley
Patient Advocate Foundation
700 Thimble Shoals Boulevard, Suite 200
Newport News, VA 23606
Phone: (800) 532-5274
Fax: (757) 873-8999
E-mail: bethd@patientadvocate.org

Angelina Esparza
University of Texas, M.D. Anderson Cancer Center
1515 Holcombe Boulevard
Houston, TX 77009
Phone: (713) 792-3357
Fax: (713) 796-8347
E-mail: aesparza@mdanderson.org

Tiffany Galligan
Lance Armstrong Foundation
P.O. Box 161150
Austin, TX 78716
Phone: (512) 236-8820, ext. 128
E-mail: tiffany@laf.org

Angela Geiger
American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
Phone: (404) 327-6414
Fax: (404) 325-9341
E-mail: ageiger@cancer.org

Hellen Gelband
Institute of Medicine
500 5th Street, NW, #733
Washington, DC 20001
Phone: (202) 334-1446
Fax: (202) 334-2647
E-mail: Hgelband@nas.edu

Alisa M. Gilbert
The National Office of Native Cancer Survivorship
13790 Davis Street
Anchorage, AK 99516
Phone: (800) 315-8848
Fax: (907) 333-2071
E-mail: sulook@aol.com

Timothy J. Gilbert
Alaska Native Tribal Health Consortium
4141 Ambassador Drive
Anchorage, AK 99508
Phone: (907) 729-1916
Fax: (907) 729-1901
E-mail: tjgilbert@anthc.org

Sue A. Gilman
The Susan G. Komen Breast Cancer Foundation
7221 Brookcove Lane
Dallas, TX 75214
Phone: (214) 824-6837
Fax: (214) 824-0824
E-mail: jbgilma@attglobal.net

Leslie S. Given
Centers for Disease Control and Prevention
4770 Buford Highway, NE, MS K-57
Atlanta, GA 30341
Phone: (770) 488-3099
Fax: (770) 488-3230
E-mail: lgiven@cdc.gov

Betsy Goldberg
Lance Armstrong Foundation
P.O. Box 161150
Austin, TX 78716
Work: (512) 236-8820
Fax: (512) 236-8482
E-mail: betsy@laf.org

Karen Greendale
New York State Department of Health
Riverview Center, 3rd Floor West,
150 Broadway
Albany, NY 12204
Phone: (518) 474-1222
Fax: (518) 473-0642
E-mail: kxg03@health.state.ny.us

Ellen R. Gritz
University of Texas, M.D. Anderson Cancer Center
1515 Holcombe Boulevard, Suite 243
Houston, TX 77030-4009
Phone: (713) 792-0919
Fax: (713) 794-4730
E-mail: egritz@mdanderson.org

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies A-3

Susan E. Grober
Cancer Care Incorporated
275 Seventh Avenue
New York, NY 10001
Phone: (212) 712-6165
Fax: (212) 712-8495
E-mail: sgrober@cancercare.org

Wendy S. Harpham
Presbyterian Hospital of Dallas
P.O. Box 835574
Richardson, TX 75083-5574
Phone: (972) 702-0321
Fax: (972) 702-0321
E-mail: harpham@comcast.net

Amy Harris
Centers for Disease Control and Prevention
4770 Buford Highway, NE
Atlanta, GA 30341
Phone: (770) 488-4260
Fax: (770) 488-4760
E-mail: ABHarris@cdc.gov

Catherine D. Harvey
National Coalition for Cancer Survivorship
655 Cain Drive
Mt. Pleasant, SC 29464
Phone: (843) 881-4645
Fax: (843) 971-1310
E-mail: catherineharvey@comcast.net

Pamela J. Haylock
University of Texas Medical Branch
School of Nursing
18954 State Hwy 16 North
Medina, TX 78055
Phone: (830) 589-7380
Fax: (830) 589-7381
E-mail: pjhaylock@indian-creek.net

Debra J. Holden
RTI International
3040 Cornwallis Road
Research Triangle Park, NC 27709
Phone: (919) 541-6000
Fax: (919) 541-7148
E-mail: debra@rti.com

Melissa M. Hudson
St. Jude Children’s Research Hospital
332 North Lauderdale Street
Memphis, TN 38105
Phone: (901) 495-3445
Fax: (901) 495-3058
E-mail: melissa.hudson@stjude.org

Linda A. Jacobs
University of Pennsylvania Abramson Cancer Center
14 Penn Tower, 3400 Spruce Street
Philadelphia, PA 19104
Phone: (215) 615-3371
Fax: (610) 615-3349
E-mail: linda.jacobs@uphs.upenn.edu

Mickey L. Jacobs
Texas Cancer Council
211 E. 7th, Suite 710
Austin, TX 78701
Phone: (512) 463-3190
Fax: (512) 475-2563
E-mail: mjacobs@tcc.state.tx.us

Harriet Jett
Centers for Disease Control and Prevention
4770 Buford Highway, NE, MS K-40
Atlanta, GA 30341
Phone: (770) 488-6472
Fax: (770) 488-5971
E-mail: hjett@cdc.gov

Stuart J. Kaplan
Children’s Oncology Camp Foundation
P.O. Box 1450
Missoula, MT 59801
Phone: (901) 495-4776
Fax: (901) 495-3058
E-mail: stuart.kaplan@stjude.org

Susan L. Lamb
Oklahoma State Department of Health
Chronic Disease Services
1000 N.E.10th
Oklahoma City, OK 73117
Phone: (405) 271-4072, ext. 57126
Fax: (405) 271-5181
E-mail: susanl@health.state.ok.us

A-4

Nancy Lee
Centers for Disease Control and Prevention
2858 Woodcock Boulevard
Atlanta, GA 30341
Phone: (770) 488-3011
Fax: (770) 488-4760
E-mail: nclee@cdc.gov

Susan Leigh
National Coalition for Cancer Survivorship
505 E. Golder Ranch Road
Tuscan, AZ 85739
Phone: (520) 825-0058
Fax: (520) 825-8650
E-mail: sleigh@mindspring.com

Maureen T. Lilly
RAND Corporation
4200 Wisconsin Avenue, NW, 4th Floor
Washington, DC 20016
Phone: (202) 895-2618
Fax: (202) 966-5410
E-mail: mlilly@rand.org

Steven E. Lipshultz
University of Miami
Coral Gables, FL 33124
Phone: (305) 284-2211
E-mail: steve_lipshultz@miami.edu

Randall Macon
Lance Armstrong Foundation
P.O. Box 161150
Austin, TX 78716
Phone: (512) 236-8820
Fax: (512) 236-8482

Doug McCormack
Sonnenschein Nath & Rosenthal
1301 K Street, NW, Suite 600 East Tower
Washington, DC 20005
Phone (202) 408-9138
E-mail: dmccormack@sonnenschein.com

Anna T. Meadows
Children’s Hospital of Philadelphia
34th Street & Civic Center Boulevard
Philadelphia, PA 19104
Phone: (215) 590-2804
Fax: (215) 590-4183
E-mail: meadows@email.chop.edu

Margo Michaels
National Cancer Institute, NIH
6116 Executive Boulevard, Suite 202
Rockville, MD 20892-8334
Phone: (301) 594-8993
E-mail: micham@mail.nih.gov

Susan Murchie
RTI International
3040 Cornwallis Road
Research Triangle Park, NC 27709
Phone: (919) 485-2604
Fax : (919) 541-6683
E-mail: murchie@rti.org

Donna Nichols
Texas Department of Health
350 Young School House Road
Smithville, TX 78957
Phone: (512) 458-7261
E-mail: donna.nichols@tdh.state.tx.us

Kevin C. Oeffinger
University of Texas Southwestern Medical Center
6263 Harry Hines Boulevard
Dallas, TX 75390-9067
Phone: (214) 648-1399
Fax: (214) 648-1307
E-mail: kevin.oeffinger@utsouthwestern.edu

Karen Parker
President’s Cancer Panel
31 Center Drive
Building 31, Room 4A48
Bethesda, MD 20814
Phone: (301) 496-1148
Fax: (301) 402-1508
E-mail: klparker@mail.nih.gov

Marilyn M. Patterson
Oncology Nursing Society
300 Jeff Woodfin Road
Inman, SC 29349
Phone: (864) 473-2098
Fax: (864) 473-2275
E-mail: fatiguelady@hotmail.com

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies A-5

Diane F. Perlmutter Phyllis Rochester
Gilda’s Club Worldwide Centers for Disease Control and Prevention
322 Eighth Avenue 4770 Buford Highway, NE
New York, NY 10001 Atlanta, GA 30341
Phone: (917) 305-1200, ext. 230 Phone: (770) 488-3096
Fax: (917) 305-0549 Fax: (770) 488-3230
E-mail: dperlmutter@gildasclub.org E-mail: pfr5@cdc.gov

Loria Pollack Michael Samuelson
Centers for Disease Control and Prevention The National Center for Health Promotion
4700 Buford Hwy, NE, MS K-55 2232 S. Main Street, #475
Atlanta, GA 30033 Ann Arbor, MI 48103
Phone: (770) 488-3181 Phone: (734) 429-3065
Fax: (770) 488-4639 Fax: (734) 429-8309
E-mail: lop5@cdc.gov E-mail: Michael@thenationalcenter.com

Tabatha Powell Jay L. Silver
Centers for Disease Control and Prevention Intercultural Cancer Council
4770 Buford Highway, NE 6655 Travis Street, Suite 322
Atlanta, GA 30341 Houston, TX 77030-1312
Phone: (770) 448-4263 Phone: (713) 798-1069
Fax: (770) 488-4760 Fax: (713) 798-6222
E-mail: tdo3@cdc.gov E-mail: jsilver@bcm.tmc.edu

Elizabeth Randall-David Priya Sircar
Center for Creative Education Lance Armstrong Foundation
1019 W. Markham Avenue P.O. Box 161150
Durham, NC 27701 Austin, TX 78716
Phone: (919) 687-0886 Phone: (512) 236-8820
Fax: (919) 687-0886 Fax: (512) 236-8482
E-mail: Brdcfce@aol.com

Cynthia S. Soloe
Christopher J. Recklitis RTI International
Dana-Farber Cancer Institute 3040 Cornwallis Road
44 Binney Street Research Triangle Park, NC 27709
Boston, MA 02115 Phone: (919) 541-6000
Phone: (617) 632-3839 Fax: (919) 541-7148
E-mail: christopher_recklitis@dfci.harvard.edu E-mail: csoloe@rti.org

Leslie L. Robison George-Ann Stokes
University of Minnesota Centers for Disease Control and Prevention
420 Delaware Street, SE, MMC 422 4770 Buford Highway, NE, MS K-57
Minneapolis, MN 55455 Atlanta, GA 30341
Phone: (612) 626-2902 Phone: (770) 488-4780
Fax: (612) 626-4842 Fax: (770) 488-3230
E-mail: robison@epi.umn.edu E-mail: gas7@cdc.gov

A-6

Ellen Stovall Kirk Watson
National Coalition for Cancer Survivorship Former Mayor of Austin
1010 Wayne Avenue, Suite 770 106 East Sixth Street, Suite 700
Silver Spring, MD 20910 Austin, TX 78701
Phone: (301) 650-9127 Phone: (512) 479-5900
Fax: (301) 565-9670 Fax: (512) 479-5934
E-mail: estovall@canceradvocacy.org E-mail: Kwatson@watsonbishop.com

Edward L. Trimble Fran Wheeler
National Cancer Institute, NIH Chronic Disease Directors
6130 Executive Boulevard, Suite 7025 1107 Rutland Drive
Rockville, MD 20892-7436 West Columbia, SC 29169
Phone: (301) 496-2522 Phone: (803) 796-9574
Fax: (301) 402-0557 Fax: (803) 796-6510
E-mail: tt6m@nih.gov E-mail: fran-wheeler@sc.rr.com

Susan True Brock Yetso
Centers for Disease Control and Prevention Ulman Cancer Fund for Young Adults
4770 Buford Highway, NE, MS K-57 5575 Sterrett Place, Suite 340A
Atlanta, GA 30314 Columbia, MD 21044
Phone: (770) 488-4880 Phone: (410) 964-0202
Fax: (770) 488-3230 Fax: (410) 964-0402
E-mail: smt7@cdc.gov E-mail: brock@ulmanfund.org

PerStephanie Thompson Joan Levy Zlotnik
Centers for Disease Control and Prevention Institute for the Advancement of Social Work Research
4770 Buford Highway, NE 750 First Street, NE, Suite 700
Atlanta, GA 30341 Washington, DC 20002-4241
Phone: (770) 488-4263 Phone: (202) 336-8393
Fax: (770) 488-4760 Fax: (202) 336-8351
E-mail: PThompson@cdc.gov E-mail: jzlotnik@naswdc.org

Diana Ulman
Maryland Cancer Plan
4240 Blue Barrow Ride
Ellicott City, MD 21042
Phone: (410) 461-3400
Fax: (410) 461-3401
E-mail: dulman@connext.net

Doug Ulman
Lance Armstrong Foundation
P.O. Box 161150
Austin, TX 78716
Phone: (512) 236-8820
Fax: (512) 236-8482
E-mail: doug@laf.org

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies A-7

APPENDIX B: HEALTHY PEOPLE 2010 CANCER OBJECTIVES

1. Reduce the overall cancer death rate.
2. Reduce the lung cancer death rate.
3. Reduce the breast cancer death rate.
4. Reduce the death rate from cancer of the uterine cervix.
5. Reduce the colorectal cancer death rate.
6. Reduce the oropharyngeal cancer death rate.
7. Reduce the prostate cancer death rate.
8. Reduce the rate of melanoma cancer deaths.
9. Increase the proportion of persons who use at least one of the

following protective measures that may reduce the risk of skin
cancer: avoid the sun between 10 a.m. and 4 p.m., wear sun-
protective clothing when exposed to sunlight, use sunscreen with
a sun-protective factor (SPF) of 15 or higher, and avoid artificial
sources of ultraviolet light.

9a. (Developmental) Increase the proportion of adolescents in
grades 9 through 12 who follow protective measures that may
reduce the risk of skin cancer.

9b. Increase the proportion of adults aged 18 years and older who
follow protective measures that may reduce the risk of skin
cancer.

10. Increase the proportion of physicians and dentists who counsel
their at-risk patients about tobacco use cessation, physical
activity, and cancer screening.

11. Increase the proportion of women who receive a Pap test.
12. Increase the proportion of adults who receive a colorectal cancer

screening examination
13. Increase the proportion of women aged 40 years and older who

have received a mammogram within the preceding 2 years.
14. Increase the number of States that have a statewide population-

based cancer registry that captures case information on at least 95
percent of the expected number of reportable cancers.

15. Increase the proportion of cancer survivors who are living 5 years
or longer after diagnosis.

Source: http://www.healthypeople.gov/document/Word/Volume1/03Cancer

B-1

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Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
Committee on Psychosocial Services to
Cancer Patients/Families in a Community Setting
Board on Health Care Services
Nancy E. Adler and Ann E. K. Page, Editors
CANCER CARE FOR THE
WHOLE PATIENT
MEETING PSYCHOSOCIAL HEALTH NEEDS

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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Cancer care for the whole patient : meeting psychosocial health needs / Commit-
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Includes bibliographical references and index.
ISBN 978-0-309-11107-2 (hardcover)
1. Cancer—Patients—Care—United States. 2. Cancer—Patients—Services
for—United States. 3. Cancer—Social aspects—United States. I. Adler, Nancy E.
II. Page, Ann (Ann E. K.) III. National Institute of Medicine (U. S.) Committee
on Psychosocial Services to Cancer Patients / Families in a Community Setting.
[DNLM: 1. Neoplasms–psychology. 2. Neoplasms—therapy. 3. Counseling—
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COMMITTEE ON PSYCHOSOCIAL SERVICES TO CANCER
PATIENTS/FAMILIES IN A COMMUNITY SETTING
NANCY E. ADLER (Chair), Professor of Medical Psychology and
Vice-Chair, Department of Psychiatry, University of California, San
Francisco
RHONDA J. ROBINSON-BEALE, Chief Medical Officer, United
Behavioral Health, Van Nuys, California
DIANE S. BLUM, Executive Director, CancerCare Inc., New York
PATRICIA A. GANZ, Professor, UCLA Schools of Medicine and Public
Health and Jonsson Comprehensive Cancer Center, Los Angeles
SHERRY GLIED, Professor and Chair, Department of Health Policy
and Management, Mailman School of Public Health, Columbia
University, New York
JESSIE GRUMAN, President, Center for the Advancement of Health,
Washington, DC
MICHAEL HOGE, Professor of Psychology (in Psychiatry), Yale
University School of Medicine, New Haven
JIMMIE C. HOLLAND, Wayne E. Chapman Chair in Psychiatric
Oncology, Memorial Sloan-Kettering Cancer Center, New York
MELISSA M. HUDSON, Director, After Completion of Therapy Clinic,
St. Jude Children’s Research Hospital, Memphis
SHERRIE KAPLAN, Associate Dean for Clinical Policy and Health
Services Research, University of California at Irvine School of
Medicine
ALICIA K. MATTHEWS, Associate Professor, University of Illinois,
Chicago
RUTH MCCORKLE, Florence S. Wald Professor of Nursing and
Director, Center for Excellence in Chronic Illness Care, Yale
University School of Nursing, New Haven
HAROLD ALAN PINCUS, Vice Chair, Department of Psychiatry, College
of Physicians and Surgeons, Columbia University and Director of
Quality and Outcomes Research, New York-Presbyterian Hospital
LEE S. SCHWARTZBERG, Medical Director, The West Clinic, Memphis
EDWARD H. WAGNER, Director, Group Health Cooperative W.A.
McColl Institute for Healthcare Innovation Center for Health
Studies, Seattle
TERRIE WETLE, Associate Dean of Medicine for Public Health and
Public Policy, Brown Medical School, Providence
Study Staff
ANN E. K. PAGE, Study Director and Senior Program Officer, Board on
Health Care Services

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�i
JASON F. LEE, Christine Mirzayan Science and Technology Policy
Graduate Fellow (9/06–12/06)
RYAN PALUGOD, Research Assistant
WILLIAM MCLEOD, Senior Research Librarian
EVALYNE BRYANT-WARD, Financial Associate
Health Care Ser�ices Board
MICHELE ORZA, Acting Director
CLYDE BEHNEY, Acting Director (5/06–12/06)
DANITZA VALDIVIA, Administrative Assistant

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�ii
Reviewers
This report has been reviewed in draft form by individuals chosen for
their diverse perspectives and technical expertise, in accordance with pro-
cedures approved by the NRC’s Report Review Committee. The purpose
of this independent review is to provide candid and critical comments that
will assist the institution in making its published report as sound as possible
and to ensure that the report meets institutional standards for objectivity,
evidence, and responsiveness to the study charge. The review comments
and draft manuscript remain confidential to protect the integrity of the
deliberative process. We wish to thank the following individuals for their
review of this report:
TERRY BADGER, College of Nursing, The University of Arizona,
Tucson, Arizona
BRUCE COMPAS, Department of Psychology and Human
Development, Vanderbilt University, Nashville, Tennessee
RONALD EPSTEIN, Rochester Center to Improve Communication
in Health Care, University of Rochester School of Medicine and
Dentistry, Rochester, New York
STEWART FLEISHMAN, Cancer Supportive Services, Continuum
Cancer Centers of New York: Beth Israel and St Luke’s-
Roosevelt, New York
PAUL JACOBSEN, Health Outcomes and Behavior Program,
Moffitt Cancer Center, and Departments of Psychology and
Interdisciplinary Oncology, University of South Florida, Tampa,
Florida

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�iii REVIEWERS
SARAH HOPE KAGAN, University of Pennsylvania School of
Nursing, Philadelphia, Pennsylvania
WAYNE KATON, Department of Psychiatry and Behavioral Sciences,
University of Washington, Seattle, Washington
PAULA KIM, Translating Research Across Communities (TRAC),
Fallbrook, California
BARBARA MURPHY, Hematology/Oncology Division, Vanderbilt
University, Nashville, Tennessee
LEE NEWCOMER, United HealthCare Corporation, Edina,
Minnesota
KEVIN OEFFINGER, Program for Adult Survivors of Pediatric
Cancer, Departments of Pediatrics and Medicine, Memorial
Sloan-Kettering Cancer Center, New York
PAUL RUDOLF, Arent Fox LLP, Washington, DC
EDWARD SALSBERG, Center for Workforce Studies, Association of
American Medical Colleges, Washington, DC
LIDIA SCHAPIRA, Gillette Center for Breast Cancer, Massachusetts
General Hospital Cancer Center, Boston, Massachusetts
JOSEPH SIMONE, Simone Consulting, Atlanta, Georgia
KATHRYN SMOLINSKI, Association of Oncology Social Work,
Ypsilanti, Michigan
SHELLY TAYLOR, Department of Psychology, University of
California, Los Angeles
Although the reviewers listed above have provided many constructive
comments and suggestions, they were not asked to endorse the conclusions
or recommendations nor did they see the final draft of the report before its
release. The review of this report was overseen by JOHANNA T. DWYER,
Friedman School of Nutrition Science and Policy, Tufts University School
of Medicine and Frances Stern Nutrition Center, Tufts-New England Medi-
cal Center and RICHARD G. FRANK, Department of Health Care Policy,
Harvard Medical School. Appointed by the National Research Council
and Institute of Medicine, they were responsible for making certain that
an independent examination of this report was carried out in accordance
with institutional procedures and that all review comments were carefully
considered. Responsibility for the final content of this report rests entirely
with the authoring committee and the institution.

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ix
Foreword
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
is an important new addition to a series of Institute of Medicine reports
that prescribe actions needed to improve the quality of U.S. health care.
Following in the footsteps of Crossing the Quality Chasm: A New Health
System for the 21st Century, Impro�ing the Quality of Health Care for
Mental and Substance Use Conditions, and other reports in the Quality
Chasm series, this report takes another step forward and attends to the
psychological/behavioral and social problems that can accompany serious
illness. Although the report examines psychosocial health needs from the
perspective of individuals with a diagnosis of cancer, the recommendations
in this report are also relevant to clinicians, other health care providers,
payors, and quality oversight organizations concerned with the care of
individuals with other serious and complex medical conditions.
Research has amply demonstrated the significance of psychosocial fac-
tors to health and health care. Incorporating evidence from studies of
psychological and social determinants of health, clinical research on the ef-
fectiveness of psychological and behavioral services, health services research
on the effective organization and delivery of health care, and biologic re-
search in fields such as psychoneuroimmunology, this report documents the
consequences of failing to meet psychosocial health needs. Importantly, it
translates scientific research findings into practical applications for improv-
ing the quality of cancer care.
The result is a new standard of care for cancer care, a standard that in-
corporates acknowledgement, treatment, and management of psychosocial

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x FOREWORD
problems. While this report deals specifically with cancer patients, the les-
son to improve the quality of care by focusing on the psychosocial needs of
the whole patient will apply as well to many other conditions.
Harvey V. Fineberg, MD, PhD
President, Institute of Medicine

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xi
Preface
Americans place a high premium on new technologies to solve our
health care needs. However, technology alone is not enough. Health is
determined not just by biological processes but by people’s emotions, be-
haviors, and social relationships. Sadly, these factors are often ignored or
not defined as part of health care. Many doubt their importance and dismiss
the evidence as being based on “soft science.” Even when acknowledged,
they are often seen as ancillary rather than central to care. High and es-
calating health care costs fuel the argument that addressing such concerns
is a luxury rather than a necessity. These views fly in the face of evidence
of the important role that psychosocial factors play in disease onset and
progression, not to mention their impact on people’s ability to function
and maintain a positive quality of life. As this report documents, a growing
body of scientific evidence demonstrates that psychological and social prob-
lems can prevent individuals from receiving needed health care, complying
with treatment plans, and managing their illness and recovery. Another
recent Institute of Medicine report1 states that the purpose of health care is
to “continuously reduce the impact and burden of illness, injury, and dis-
ability, and . . . improve . . . health and functioning.” To accomplish this,
good quality health care must attend to patients’ psychosocial problems and
provide services to enable them to better manage their illnesses and underly-
ing health. To ignore these factors while pouring billions of dollars into new
1 IOM. 2006. Performance measurement: Accelerating impro�ement. Washington, DC: The
National Academies Press.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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xii PREFACE
technologies is like spending all one’s money on the latest model car and
then not having the money left to buy the gas needed to make it run.
This report examines psychosocial health services from the perspective
of the more than ten and a half million individuals in the United States who
live with a current or past diagnosis of cancer, and who reside in 1 of every
10 U.S. households. Not only are these patients affected by their illness,
but so, too, are their families. Fortunately, new advances in treatment are
transforming the nature of cancer as a disease. Increasingly individuals are
prevailing against acute, life-threatening diagnoses and physically demand-
ing (and sometimes themselves life-threatening) surgical, radiation, and
drug treatments. They are joining a growing segment of the U.S. popula-
tion—those with chronic illnesses. This has important implications for the
organization and delivery of services and for health care costs. Although
the recommendations in this report address the delivery of psychosocial
health services to individuals diagnosed with cancer, the committee believes
the model for care delivery developed for the report and the accompany-
ing recommendations are applicable to the health care of all with chronic
illnesses. Indeed, much of the evidence of the effectiveness of individual
psychosocial health services and models of care reviewed by the committee
comes from services and interventions designed for individuals with other
types of chronic illnesses.
The committee found evidence that was both cautionary and encourag-
ing. Both patients and providers tell us that attention to psychosocial health
needs is the exception rather than the rule in oncology practice today. We
noted with dismay the many recommendations over the years calling for
more attention to psychosocial concerns on which there has been no ac-
tion. However, there are forces at play currently that could facilitate change
as a result of this report. First, the patient care tools, approaches, and
resources needed to deliver effective services for those in need are already
sufficiently (though not ideally) developed. Today, every individual treated
for cancer can (and should) expect to have their psychological and social
needs addressed alongside their physical needs. Second, this report provides
an ingredient essential to all successful change initiatives—a shared vision
toward which all involved parties can direct and coordinate their efforts.
This report puts forth such a vision in a standard of care articulating how
psychosocial health services should be routinely incorporated into oncology
care. This multidisciplinary standard can provide a common framework
around which clinicians, health care organizations, patients and their ad-
vocates, payers, quality oversight organizations, and all concerned about
the quality of cancer care can organize and coordinate their efforts and
achieve synergy.
Finally, successful change initiatives also are characterized by their
strong leadership. The United States is fortunate to have strong individual

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PREFACE xiii
and organizational leaders who have done much to advance the quality of
cancer care. This leadership is a powerful resource for change, and can do
much to make the delivery of psychosocial health services a routine part of
cancer care. To engage these parties in advancing the standard of care for
psychosocial health services, the committee has put forth a small number of
recommendations (10 in all), each targeted to key leadership—clinical lead-
ers, advocacy organizations, health plans and purchasers, quality oversight
organizations, and sponsors of research. The committee hopes that all of
these leaders will join in making this new standard of care the norm—and
better the health care and health of our brothers, sisters, parents, children,
and ourselves—for the more than 40 percent of all Americans who will
receive a diagnosis of cancer in their lifetime.
Nancy E. Adler
Chair

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Copyright © National Academy of Sciences. All rights reserved.
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x�
Acknowledgments
The Committee on Psychosocial Services to Cancer Patients/Families in
a Community Setting thanks the many individuals and organizations who
helped with its search for effective psychosocial health services and models
for their effective delivery, and provided key information on the health care
workforce and a number of policy issues. We gratefully acknowledge Carol
L. Alter, MD, at the TEN Project and Georgetown University; M. Brownell
Anderson, Robert Eaglen, PhD, and Robby Reynolds at the Association of
American Medical Colleges; Neeraj K. Arora, PhD, at the National Cancer
Institute; Terry Badger, PhD, RN, FAAN, at the University of Arizona Col-
lege of Nursing; Cynthia Belar, Diane M. Pedulla, JD, Kimberley Moore,
and Wendy Williams at the American Psychological Association; Thomas P.
Beresford, MD, at the Department of Veterans Affairs Medical Center, Uni-
versity of Colorado Health Sciences Center; Joyce Bichler, ACSW, of Gilda’s
Club Worldwide; Elise J. Bolda, PhD, of The Robert Wood Johnson Foun-
dation’s Community Partnerships for Older Adults program at the Univer-
sity of Southern Maine; Cheryl Bradley, MSW, and Carson J. Pattillo, MPH,
at The Leukemia & Lymphoma Society; William S. Breitbart, MD, and
Andrew J. Roth, MD, at Memorial Sloan-Kettering Cancer Center; E. Dale
Collins, MD, at Dartmouth Hitchcock Medical Center; Lisa Corchado and
Rebecca Yowell at the American Psychiatric Association; Bridget Culhane,
RN, MN, MS, CAE, and Gail A. Mallory, PhD, RN, CNAA, at the Oncol-
ogy Nursing Society; Charles Darby at the Agency for Healthcare Research
and Quality; Kim Day at the Board of Oncology Social Work Certification;
Stephen DeMers, EdD, at the Association of State and Provincial Psychol-
ogy Boards; Molla S. Donaldson, DrPH, MS, at the American Society of

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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x�i ACKNOWLEDGMENTS
Clinical Oncology; Patricia Doykos Duquette, PhD, at the Bristol-Myers
Squibb Foundation; Peter D. Eisenberg, MD, at California Cancer Care;
Ronit Elk, PhD, Katherine Sharpe, Nancy Single, PhD, Michael Stefanek,
PhD, and Marcia W. Watts, at the American Cancer Society; Stewart
Fleishman, MD, at Continuum Cancer Centers of New York: Beth Israel and
St Luke’s-Roosevelt; Barbara Fleming, MD, Paulette Mehta, MD, Thakor
G. Patel, MD, MACP, and Shakaib Rehman, MD, FACP, at the Veterans
Health Administration; Bill Given at the Charles and Barbara Given Fam-
ily Care Program, Michigan State University; Mitch Golant, PhD, at The
Wellness Community; Marcia Grant, RN, DNSc, FAAN, and Betty Ferrell,
PhD, FAAN, at the City of Hope National Medical Center; Ethan Gray and
Kathryn M. Smolinski, MSW, at the Association of Oncology Social Work;
David Gustafson at the University of Wisconsin; Karmen Hanson, MA, at
the National Conference of State Legislatures; John E. Hennessy, Nancy
Washburn, Sandy Simmons, MSN, ARNP-C, AOCN, and Barbara Adkins,
MS, ARNP-BC, AOCNP, at Kansas City Cancer Center; Joanne Hilden,
MD, at St. Vincent Children’s Hospital in Indianapolis, Beverly Lange,
MD, at Children’s Hospital of Philadelphia, and Missy Layfield, Chair of
the Patient Advocacy Committee, all of the Children’s Oncology Group;
Caroline Huffman, LCSW, MEd, at the Lance Armstrong Foundation; Frits
Huyse, MD, PhD, at the University Medical Center Groningen, The Neth-
erlands; Paul B. Jacobsen, PhD, Nancy W. Newman, LCSW, and Donna M.
Cosenzo at the H. Lee Moffitt Cancer Center and Research Institute; Bar-
bara L. Jones, PhD, MSW, at the Association of Pediatric Oncology Social
Workers; Nancy Kane, at the Payson Center for Cancer Care; Ernest Katz,
Aura Kuperberg, Kathleen Meeske, PhD, Kathleen S. Ruccione, MPH, RN,
FAAN, and Octavio Zavala, at the Children’s Hospital Los Angeles; Anne
E. Kazak, PhD, ABPP, at the University of Pennsylvania School of Medicine;
Emmett B. Keeler, PhD, at the RAND Corporation; Murray Kopelow, MD,
at the Accreditation Council for Continuing Medical Education; Wolfgang
Linden, PhD, at the University of British Columbia, Canada; Karen Lla-
nos at the Center for Health Care Strategies, Inc.; Kate Lorig, RN, DrPH,
at Stanford University; Matthew J. Loscalzo, MSW, at the Rebecca and
John Moores UCSD Cancer Center; Richard P. McQuellon, PhD, at the
Wake Forest University Baptist Medical Center; Stephen Miller, MD, at the
American Board of Medical Specialties; Moira A. Mulhern, PhD, at Kansas
City Turning Point; Todd Peterson at the American Nurse Credentialing
Center; Gail Pfeiffer, RHIA, CCS-P, at the Cleveland Clinic; William Pirl,
MD, at the Massachusetts General Hospital Cancer Center; Paul A. Poni-
atowski at the American Board of Internal Medicine; Craig Ravesloot, PhD,
at the University of Montana; Christopher J. Recklitis, PhD, MPH, at the
Dana-Farber Cancer Institute; Karen Robitaille at Yale University School
of Medicine; Sarah Rosenbloom, PhD, at Northwestern University Feinberg

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ACKNOWLEDGMENTS x�ii
School of Medicine; Thomas J. Smith, MD, at Virginia Commonwealth
University’s Massey Cancer Center; Joan Stanley at the American Associa-
tion of Colleges of Nursing; Annette Stanton, PhD, at the University of
California, Los Angeles; James Stockman, MD, and Jean Robillard, MD,
at the American Board of Pediatrics; Ellen L. Stovall of the National Coali-
tion for Cancer Survivorship; Bonnie Strickland at the Health Resources
and Services Administration, Department of Health and Human Services;
Thomas B. Strouse, MD, FAPM, DFAPA, at the Samuel Oschin Compre-
hensive Cancer Institute, Cedars Sinai Medical Center; Phyllis Torda at the
National Committee for Quality Assurance; Douglas Tynan, PhD, at the
American Board of Professional Psychology; Ginny Vaitones at the Board of
Oncology Social Work Certification; Garry Welch, PhD, at Baystate Medi-
cal Center; Pamela R. West, PT, DPT, MPH, at the Centers for Medicare
& Medicaid Services; Nancy Whitelaw at the National Council on Aging;
Rodger Winn at the National Quality Forum; and James R. Zabora, PhD,
of the National Catholic School of Social Service, Catholic University of
America.
In addition, we thank M. Robin DiMatteo, Kelly B. Haskard, and
Summer L. Williams, all at the University of California, Riverside, and
Sheldon Cohen and Denise Janicki-Deverts, both at Carnegie Mellon Uni-
versity, for their papers, respectively, on “Effects of Distressed Psychological
States on Adherence and Health Behavior Change: Cognitive, Motivational,
and Social Factors” and “Stress and Disease.” These excellent papers helped
the committee think through and quickly review a growing body of evidence
documenting the health effects of psychological and social stressors.
We also offer many thanks to Maria Hewitt, DrPH, formerly with the
National Cancer Policy Board at the Institute of Medicine, for her gener-
ous help throughout the initial stages of this study. Rona Briere of Briere
Associates, Inc., provided expert copy editing, and Alisa Decatur excel-
lent proofreading and manuscript preparation assistance. And as always,
Danitza Valdivia, administrative assistant to the Board on Health Care
Services, provided ever-ready and gracious assistance regardless of the task
or timeline.
Finally, we thank our project officers at the National Institutes of
Health. Susan D. Solomon, PhD, senior advisor in the Office of Behavioral
and Social Sciences Research, and project officer at the beginning of this
study, skillfully launched the study and shaped its parameters. Julia H.
Rowland, PhD, director of the National Cancer Institute’s Office of Cancer
Survivorship, served as project officer for the duration of the study, and
provided ongoing support, thoughtful and expert guidance, and generous
assistance in identifying and securing needed resources.

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xix
Contents
SUMMARY 1
1 THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS 23
The Reach of Cancer, 24
Cancer-Induced Physical Stressors, 26
Psychosocial Problems, 30
Obstacles to Managing Psychosocial Stressors, 37
Purpose, Scope, and Organization of This Report, 42
2 CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS 51
Psychosocial Stressors and Their Effects on Patients, 53
Alterations in Body Functioning Due to Stress, 61
Adverse Effects on Families and the Larger Community, 67
Conclusions, 68
3 PSYCHOSOCIAL HEALTH SERVICES 81
A Diversity of Services, 82
Evidence of Effectiveness, 83
Ready Availability of Key Services, 108
4 A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH
SERVICES 153
Effective Delivery of Psychosocial Health Care, 153
A Unifying Model for Care Delivery, 159

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xx CONTENTS
A Recommended Standard for Care, 199
ANNEX 4-1: Empirically Validated Models of and Clinical
Practice Guidelines for the Effective Delivery of Psychosocial
Health Services, 201
5 IMPLEMENTING THE STANDARD OF CARE 219
Approaches to the Delivery of Psychosocial Health Services, 220
Recommendations, 237
6 PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 241
Supports for and Constraints on Interventions to Deliver
Psychosocial Services, 242
Supports for and Constraints on Service Availability, 260
Use of Performance Measurement to Improve the Quality of
Psychosocial Health Care, 269
Conclusions and Recommendations, 274
7 PREPARING THE WORKFORCE 283
A Large and Diverse Workforce, 284
Workforce Education in Biopsychosocial Approaches to Care, 288
Educational Barriers to Psychosocial Health Care, 309
Conclusions and Recommendation, 319
8 A RESEARCH AGENDA 329
A Taxonomy and Nomenclature for Psychosocial Health
Services, 329
Effectiveness and Health Services Research, 330
Report Evaluation, 338
APPENDIXES
A COMMITTEE MEMBER BIOGRAPHIES 343
B STUDY METHODS 353
C RECOMMENDATIONS FROM PRIOR
SELECTED REPORTS 379
INDEX 409

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xxi
Tables, Figures, and Boxes
TABLES
S-1 Psychosocial Needs and Formal Services to Address Them, 10
3-1 Psychosocial Needs and Formal Services to Address Them, 82
3-2 Selected Nationwide Sources of Free Patient Information on Cancer
and Cancer-Related Services, 109
3-3 Selected Psychosocial Services (Other Than Information) Available at
No Cost to Individuals/Families with Cancer, 118
4-1 Models for Delivering Psychosocial Health Services and Their Com-
mon Components, 155
4-2 Comparison of Needs Assessment Instruments, 174
4-3 Comparison of Domain Item Distribution Across Needs Assessment
Instruments, 188
5-1 Distribution of Adult Ambulatory Cancer Care Visits by Site of
Visit, Physician Specialty, and Clinic Type, United States, 2001–
2002, 221
6-1 Examples of Policy Support for Interventions to Deliver Psychosocial
Health Care, 244
6-2 Psychologist Claims Paid by Medicare, 2003–2005, by Type of
Intervention, and Comparison 2005 Claims Paid for All Provider
Types, 253
6-3 Some Availability of Psychosocial Services in Health and Human
Services Sectors and from Informal Supports, 262
6-4 Performance Measures of Psychosocial Health Care Adopted/
Endorsed by Leading Performance Measurement Initiatives as of
July 2007, 271

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xxii TABLES, FIGURES, AND BOXES
7-1 Estimates of the Supply of Selected Physician Types Available to Pro-
vide or Ensure the Provision of Psychosocial Health Services, 285
7-2 Estimates of the U.S. Supply of Selected Nonphysician Providers
Available to Provide or Ensure the Provision of Psychosocial Health
Services, 286
B-1 Serial Search Strategies, 362
B-2 Psychosocial Needs and Formal Services to Address Them, 364
C-1 Recommendations Addressing Psychosocial Services, 379
C-2 Other Recommendations of Potential Relevance, 394
FIGURES
S-1 Model for the delivery of psychosocial health services, 8
1-1 Cancer care trajectories, 25
4-1 Model for the delivery of psychosocial health services, 158
BOXES
5-1 A Letter to My Patients, 231
5-2 Example of Patient Handout on Sources of Help in Managing Cancer
and Its Treatment, 233
5-3 Patient Comments on the Usefulness of CancerCare’s Telephone Edu-
cation Workshops, 234
6-1 Medicare Care Coordination Demonstration Projects, 259
7-1 LCME Undergraduate Medical Education Accreditation Standards
That Address Psychosocial Health Services, 290
7-2 General Principles of Gender, Ethnic, and Behavioral Considerations
for USMLE Step 1, 292
7-3 General Competencies of the ACGME Outcome Project, 293
7-4 Selected NLNAC Core Competencies Addressing Psychosocial Health
Services, 298
7-5 Selected Core Competencies from The Essentials of Baccalaureate
Education, 299
7-6 Selected C-Change Psychosocial Core Competencies, 314
B-1 Key Factors Associated with Successful Dissemination and Adoption
of Innovations, 368

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1
Summary
ABSTRACT
Cancer care today often pro�ides state-of-the-science biomedical
treatment, but fails to address the psychological and social (psychoso-
cial) problems associated with the illness. This failure can compromise
the effecti�eness of health care and thereby ad�ersely affect the health of
cancer patients. Psychological and social problems created or exacerbated
by cancer—including depression and other emotional problems; lack of
information or skills needed to manage the illness; lack of transportation
or other resources; and disruptions in work, school, and family life—
cause additional suffering, weaken adherence to prescribed treatments,
and threaten patients’ return to health.
A range of ser�ices is a�ailable to help patients and their families man-
age the psychosocial aspects of cancer. Indeed, these ser�ices collecti�ely
ha�e been described as constituting a “wealth of cancer-related community
support ser�ices.”
Today, it is not possible to deli�er good-quality cancer care without
using existing approaches, tools, and resources to address patients’ psy-
chosocial health needs. All patients with cancer and their families should
expect and recei�e cancer care that ensures the pro�ision of appropriate
psychosocial health ser�ices. This report recommends ten actions that on-
cology pro�iders, health policy makers, educators, health insurers, health
plans, quality o�ersight organizations, researchers and research sponsors,
and consumer ad�ocates should undertake to ensure that this standard
is met.

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2 CANCER CARE FOR THE WHOLE PATIENT
PSYCHOSOCIAL PROBLEMS AND HEALTH
The burden of illnesses and disabilities in the United States and the world
is closely related to social, psychological, and beha�ioral aspects of the
way of life of the population. (IOM, 1982:49–50)
Health and disease are determined by dynamic interactions among biologi-
cal, psychological, beha�ioral, and social factors. (IOM, 2001:16)
Because health . . . is a function of psychological and social �ariables,
many e�ents or inter�entions traditionally considered irrele�ant actually
are quite important for the health status of indi�iduals and populations.
(IOM, 2001:27)
In previous reports the Institute of Medicine (IOM) has issued strong
findings about the important role of psychological/behavioral and social
factors in health and recommended more attention to these factors in the
design and delivery of health care (IOM, 1982, 2001, 2006). In 2005, the
IOM was asked once again to examine the contributions of these psycho-
social factors to health and how best to address them—in this case in the
context of cancer, which encompasses some of the nation’s most serious
and burdensome illnesses.
STUDY CONTEXT
The Reach and Influence of Cancer
One in ten American households today has a family member who has
been diagnosed with or treated for cancer1 within the past 5 years (USA
Today et al., 2006), and 41 percent of Americans can expect to be diag-
nosed with cancer at some point in their lifetime (Ries et al., 2007). More
than ten and a half million people in the United States live with a past or
current diagnosis of cancer (Ries et al., 2007).
Early detection and improved treatments for many different types of
cancer have changed our understanding of this group of illnesses from that
of a single disease that was often uniformly fatal in a matter of weeks or
months to that of a variety of diseases—some of which are curable, all of
which are treatable, and for many of which long-term disease-free survival
is possible. In the past two decades, the 5-year survival rate for the 15 most
common cancers has increased from 43 to 64 percent for men and from 57
to 64 percent for women (Jemal et al., 2004).
Nonetheless, the diseases that make up cancer represent both acute
life-threatening illnesses and serious chronic conditions. Their treatment is
1 This excludes non-melanoma skin cancers.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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SUMMARY �
typically very challenging physically to patients, requiring some combina-
tion of surgery, radiation, or chemotherapy for months or years. Even when
treatment has been completed and no cancer remains, the frequently per-
manent, serious residua of cancer and/or the side effects of chemotherapy,
radiation, hormone therapy, surgery, and other treatments can permanently
impair cardiac, neurological, kidney, lung, and other body functioning,
necessitating ongoing monitoring of cancer survivors’ health and many
adjustments in their daily living. Eleven percent of adults with cancer or a
history of cancer (almost half of whom are age 65 or older) report having
one or more limitations in their ability to perform activities of daily living
such as bathing, eating, or using the bathroom, and 58 percent report other
functional disabilities, such as the inability to walk a quarter of a mile, or
to stand or sit for 2 hours (Hewitt et al., 2003). Long-term survivors of
childhood cancer are at particularly elevated risk compared with others
their age. Nearly 20 percent of those who survive 5 years or more report
limitations in activities such as carrying groceries, climbing a flight of stairs,
or walking a block (Ness et al., 2005). Significant numbers of individuals
stop working or experience a change in employment after being diagnosed
or treated for cancer (IOM and NRC, 2006).
Not surprisingly, significant mental health problems, such as depres-
sion and anxiety disorders, are common in patients with cancer (Spiegel
and Giese-Davis, 2003; Carlsen et al., 2005; Hegel et al., 2006). Studies
have also documented the presence of symptoms meeting the criteria for
post-traumatic stress disorder (PTSD) and post-traumatic stress symptoms
(PTSS) in adults and children with cancer, as well as in the parents of
children diagnosed with cancer (Kangas et al., 2002; Bruce, 2006).2 These
mental health problems are additional contributors to functional impair-
ment in carrying out family, work, and other societal roles; poor adherence
to medical treatments; and adverse medical outcomes (Katon, 2003).
Patients with cancer (like those with other chronic illnesses) identify
a number of other problems that adversely affect their health care and re-
covery, including poor communication with physicians, lack of knowledge
about their illness and its management, lack of transportation to health care
appointments, financial problems, and lack of health insurance (Wdowik
et al., 1997; Eakin and Strycker, 2001; Riegel and Carlson, 2002; Bayliss
et al., 2003; Boberg et al., 2003; Skalla et al., 2004; Jerant et al., 2005;
Mallinger et al., 2005). Fifteen percent of households affected by cancer
report having left a doctor’s office without getting answers to important
2 These mental health problems are not unique to cancer patients. Populations with other
chronic illnesses, such as diabetes, heart disease, HIV-related illnesses, and neurological dis-
orders, also have higher rates of depression, adjustment disorders, severe anxiety, PTSD or
PTSS, and subclinical emotional distress (Katon, 2003).

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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� CANCER CARE FOR THE WHOLE PATIENT
questions about the illness (USA Today et al., 2006). The American Cancer
Society and CancerCare report receiving more than 100,000 requests an-
nually for transportation so patients can get to medical appointments, pick
up medications, or receive other health services. In 2003, nearly one in five
(12.3 million) people with chronic conditions3 lived in families that had
problems paying medical bills (May and Cunningham, 2004; Tu, 2004).
Among uninsured cancer survivors, more than one in four delayed or de-
cided not to get treatment because of its cost, and 41 percent were unable
to pay for basic necessities, including food (USA Today et al., 2006). About
5 percent of the 1.5 million American families who filed for bankruptcy in
2001 reported that medical costs associated with cancer contributed to their
financial problems (Himmelstein et al., 2005).
Although family and loved ones often provide substantial amounts of
emotional and logistical support and hands-on personal and nursing care
(valued at more than $1 billion annually) in an effort to address these needs
(Hayman et al., 2001; Kotkamp-Mothes et al., 2005), they often do so
at great personal cost, themselves experiencing depression, other adverse
health effects, and an increased risk of premature death (Schultz and Beach,
1999; Kurtz et al., 2004). Caregivers providing support to a spouse who
report strain from doing so are 63 percent more likely to die within 4 years
than others their age (Schultz and Beach, 1999). The emotional distress of
caregivers also can directly affect patients. Studies of partners of women
with breast cancer (predominantly husbands, but also “significant others,”
daughters, friends, and others) find that partners’ mental health correlates
positively with the anxiety, depression, fatigue, and symptom distress of
women with breast cancer and that the effects are bidirectional (Segrin
et al., 2005, 2007).
Effects of Psychosocial Problems on Physical Health
The psychosocial problems described above can adversely affect health
and health care in many ways. For example, a substantial literature has
documented low income as a strong risk factor for disability, illness, and
death (IOM, 2001; Subramanian et al., 2002). Inadequate income limits
one’s ability to purchase food, medications, and health care supplies neces-
sary for health and health care, as well as to secure necessary transportation
and obtain relief from other stressors that can accompany tasks of everyday
life (Kelly et al., 2006). As noted above, lack of transportation to medical
appointments, the pharmacy, the grocery store, health education classes,
peer support meetings, and other out-of-home health resources is common,
3 Asthma, arthritis, diabetes, chronic obstructive pulmonary disease, heart disease, hyperten-
sion, cancer, benign prostate enlargement, abnormal uterine bleeding, and depression.

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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SUMMARY �
and it can pose a barrier to health monitoring, illness management, and
health promotion.
Depressed or anxious individuals have lower social functioning, more
disability, and greater overall functional impairment than those without
these conditions (Spitzer et al., 1995; Katon, 2003). Distressed emotional
states also often generate additional somatic problems, such as sleep dif-
ficulties, fatigue, and pain (Spitzer et al., 1995; APA, 2000), which can
confound the diagnosis and treatment of physical symptoms. Patients with
major depression as compared with nondepressed persons also have higher
rates of unhealthy behaviors such as smoking, a sedentary lifestyle, and
overeating. Moreover, depression and other adverse psychological states
thwart behavior change and adherence to treatment regimens by impairing
cognition, weakening motivation, and decreasing coping abilities. Evidence
emerging from the science of psychoneuroimmunology—the study of the
interactions among behavior, the brain, and the body’s immune system—is
beginning to show how psychosocial stressors interfere with the working
of the body’s neuro-endocrine, immune, and other systems.
In sum, people diagnosed with cancer and their families must not only
live with and manage the challenges and risks posed to their physical health,
but also overcome psychosocial obstacles that can interfere with their
health care and diminish their health and functioning. Unfortunately, the
current medical system deploys its resources largely to address the former
problems and often ignores the latter. As a result, patients’ psychosocial
needs frequently remain unacknowledged and unaddressed in cancer care.
Cancer Care Is Often Incomplete
Many people living with cancer report that their psychosocial health
care needs are not well addressed in their care. At the most fundamental
level, throughout diagnosis, treatment, and post-treatment, patients report
dissatisfaction with the amount and type of information they are given
about their diagnosis, their prognosis, available treatments, and ways to
manage their illness and health. Health care providers often fail to com-
municate this information effectively, in ways that are understandable
to and enable action by patients (Epstein and Street, 2007). Moreover,
individuals diagnosed with cancer often report that their care providers
do not understand their psychosocial needs; do not consider psychosocial
support an integral part of their care; are unaware of psychosocial health
care resources; and fail to recognize, adequately treat, or offer referral for
depression or other sequelae of stress due to the illness in patients and their
families (President’s Cancer Panel, 2004; Maly et al., 2005; IOM, 2007).
Twenty-eight percent of respondents to the National Survey of U.S. House-
holds Affected by Cancer reported that they did not have a doctor who

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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� CANCER CARE FOR THE WHOLE PATIENT
paid attention to factors beyond their direct medical care, such as sources
of support for dealing with the illness (USA Today et al., 2006). A number
of studies also have shown that physicians substantially underestimate
oncology patients’ psychosocial distress (Fallowfield et al., 2001; Keller
et al., 2004; Merckaert et al., 2005). Indeed, oncologists themselves report
frequent failure to attend to the psychosocial needs of their patients. In a
national survey of members of the American Society of Clinical Oncology,
a third of respondents reported that they did not routinely screen their
patients for distress. Of the 65 percent that did do so, methods used were
often untested or unreliable. In a survey of members of an alliance of 20
of the world’s leading cancer centers, only 8 reported screening for distress
in at least some of their patients, and only 3 routinely screened all of their
patients for psychosocial health needs (Jacobsen and Ransom, 2007).
A number of factors can interfere with clinicians’ addressing psycho-
social health needs. These include the way in which clinical practices are
designed, the education and training of the health care workforce, shortages
and maldistribution of health personnel, and the nature of the payment and
policy environment in which health care is delivered. Because of this, im-
proving the delivery of psychosocial health services requires a multipronged
approach.
STUDY SCOPE
In this context, the National Institutes of Health asked the IOM to
empanel a committee to conduct a study of the delivery of the diverse psy-
chosocial services needed by cancer patients and their families in commu-
nity settings. The committee was tasked with producing a report describing
barriers to access to psychosocial services and ways in which these services
can best be provided, analyzing the capacity of the current mental health
and cancer treatment system to deliver such care, delineating the associ-
ated resource and training requirements, and offering recommendations
and an action plan for overcoming the identified barriers. The committee
interpreted “community care” to refer to all sites of cancer care except
inpatient settings.
This study builds on and complements several prior reports on cancer
care. First, two recent reports address quality of care for cancer survivors.
From Cancer Patient to Cancer Sur�i�or: Lost in Transition (IOM and
NRC, 2006) well articulates how high-quality care (including psychosocial
health care) should be delivered after patients complete their cancer treat-
ment. Childhood Cancer Sur�i�orship: Impro�ing Care and Quality of Life
(IOM and NRC, 2003) similarly addresses survivorship for childhood can-
cer. The recommendations made in the present report complement and can
be implemented consistent with the vision and recommendations put forth
in those reports. Second, two other recent reports address palliative care:

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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SUMMARY �
Impro�ing Palliati�e Care for Cancer (IOM and NRC, 2001) and When
Children Die: Impro�ing Palliati�e and End-of-Life Care for Children and
Their Families (IOM, 2003). For this reason, the additional considerations
involved in providing end-of-life care are not addressed in this report.
FINDINGS GIVE REASON FOR HOPE
In carrying out its charge, the IOM Committee on Psychosocial Ser-
vices to Cancer Patients/Families in a Community Setting found multiple
reasons to be optimistic that improvements in the psychosocial health care
provided to oncology patients and their families can be quickly achieved.
First, there is good evidence of the effectiveness of a variety of services
in relieving the emotional distress—even the debilitating depression and
anxiety—experienced by cancer patients. Strong evidence also supports the
utility of services aimed at helping individuals adopt behaviors that can
minimize disease symptoms and improve overall health. Other psychoso-
cial services, such as transportation to health care or financial assistance
to purchase medications or supplies, while not the subject of effectiveness
research, have long-standing and wide acceptance as humane approaches to
addressing health-related needs. Such services are available through many
health and human service providers. In particular, the strong leadership of
organizations in the voluntary sector has created a broad array of psycho-
social support services, in some cases available at no cost to the consumer.
Together, these resources have been described as constituting a “wealth of
cancer-related community support services” (IOM and NRC, 2006:229).
However, it is not sufficient simply to have effective services; interven-
tions to identify patients with psychosocial health needs and to link them
to appropriate services are needed as well. Fortunately, many providers of
health services—some in oncology, some delivering health care for other
complex health conditions—understand that psychosocial problems can
affect health adversely and have developed interventions to address these
problems. Some of these interventions are derived from theoretical or con-
ceptual frameworks, some are based on research findings, and some have
undergone empirical testing on their own; the best have all three sources
of support. Common components of these interventions point to a model
for the effective delivery of psychosocial health services (see Figure S-1).
This model includes processes that (1) identify psychosocial health needs,
(2) link patients and families to needed psychosocial services, (3) support
patients and families in managing the illness, (4) coordinate psychosocial
and biomedical health care, and (5) follow up on care delivery to moni-
tor the effectiveness of services and make modifications if needed—all of
which are facilitated by effective patient–provider communication. Routine
implementation of many of these processes is currently under way by a
number of exemplary cancer care providers in a variety of settings, attest-

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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� CANCER CARE FOR THE WHOLE PATIENT
Patient–Provider
Partnership
Provider Team
Follow-up and Re-evaluation
Development and Implementation of a Plan That:
Links
patient/family with
needed
psychosocial
services
Supports patients by:
• Providing personalized
information
• Identifying strategies to
address needs
• Providing emotional
support
• Helping patients
manage their illness
and health
Coordinates
psychosocial and
biomedical care
Patient/Family
Effective Patient–Provider Communication
fig S-1 and 4-1
R01103
Cancer Care
Identification of Psychosocial Needs
FIGURE S-1 Model for the delivery of psychosocial health services.
ing to their feasibility in settings with varying levels of resources. However,
many patients do not have the benefit of these interventions, and more ac-
tive steps are needed if this lack of access is to become the exception rather
than the rule.
CONCLUSIONS
Based on its findings with regard to the significant impact of psy-
chosocial problems on health and health care, the existence of effective
psychosocial services to address these problems, and the development and
testing of strategies for delivering these services effectively, the committee
concludes that:
Attending to psychosocial needs should be an integral part of quality
cancer care. All components of the health care system that are in�ol�ed in
cancer care should explicitly incorporate attention to psychosocial needs

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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SUMMARY �
into their policies, practices, and standards addressing clinical health care.
These policies, practices, and standards should be aimed at ensuring the
pro�ision of psychosocial health ser�ices to all patients who need them.
The committee defines psychosocial health services as follows:
Psychosocial health ser�ices are psychological and social ser�ices and in-
ter�entions that enable patients, their families, and health care pro�iders
to optimize biomedical health care and to manage the psychological/be-
ha�ioral and social aspects of illness and its consequences so as to promote
better health.
This definition encompasses both psychosocial ser�ices (i.e., activities or
tangible goods directly received by and benefiting the patient or family)
and psychosocial inter�entions (activities that enable the provision of the
service, such as needs assessment, referral, or care coordination). Examples
of psychosocial needs and services that can address those needs are listed
in Table S-1. Psychosocial interventions necessary for their appropriate
provision are portrayed in Figure S-1. The committee offers the following
recommendations for making attention to psychosocial health needs an
integral part of quality cancer care.
RECOMMENDATIONS FOR ACTION
Recommendation 1: The standard of care. All parties establishing or
using standards for the quality of cancer care should adopt the follow-
ing as a standard:
All cancer care should ensure the provision of appropriate psycho-
social health services by
• facilitating effective communication between patients and care
providers;�
• identifying each patient’s psychosocial health needs;
• designing and implementing a plan that
– links the patient with needed psychosocial services,
– coordinates biomedical and psychosocial care,
– engages and supports patients in managing their illness and
health; and
• systematically following up on, reevaluating, and adjusting
plans.
4 Although the language of this standard refers only to patients, the standard should be taken
as referring to both patients and families when the patient is a child, has family members
involved in providing care, or simply desires the involvement of family members.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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10 CANCER CARE FOR THE WHOLE PATIENT
TABLE S-1 Psychosocial Needs and Formala Services to Address Them
Psychosocial Need Health Services
Information about
illness, treatments,
health, and services
• Provision of information, e.g., on illness, treatments, effects
on health, and psychosocial services, and help to patients/
families in understanding and using the information
Help in coping with
emotions accompanying
illness and treatment
• Peer support programs
• Counseling/psychotherapy to individuals or groups
• Pharmacological management of mental symptoms
Help in managing illness • Comprehensive illness self-management/self-care programs
Assistance in changing
behaviors to minimize
impact of disease
• Behavioral/health promotion interventions, such as:
– provider assessment/monitoring of health behaviors (e.g.,
smoking, exercise)
– brief physician counseling
– patient education, e.g., in cancer-related health risks and
risk reduction measures
Material and logistical
resources, such as
transportation
• Provision of resources
Help in managing
disruptions in work,
school, and family life
• Family and caregiver education
• Assistance with activities of daily living (ADLs), instrumental
ADLs, chores
• Legal protections and services, e.g., under Americans with
Disabilities Act and Family and Medical Leave Act
• Cognitive testing and educational assistance
Financial advice and /or
assistance
• Financial planning/counseling, including management of
day-to-day activities such as bill paying
• Insurance (e.g., health, disability) counseling
• Eligibility assessment/counseling for other benefits (e.g.,
Supplemental Security Income, Social Security Disability
Income)
• Supplemental financial grants
aFamily members and friends and other informal sources of support are key providers of
psychosocial health services. This table includes only formal sources of psychosocial support—
those that must be secured through the assistance of an organization or agency that in some
way enables the provision of needed services (sometimes at no cost or through volunteers).
Key participants and leaders in cancer care have major roles to play in pro-
moting and facilitating adherence to this standard of care. Their respective
roles are described in the following nine recommendations.
Recommendation 2: Health care providers. All cancer care providers
should ensure that every cancer patient within their practice receives

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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SUMMARY 11
care that meets the standard for psychosocial health care. The National
Cancer Institute should help cancer care providers implement the stan-
dard of care by maintaining an up-to-date directory of psychosocial
services available at no cost to individuals/families with cancer.
The committee believes that all providers can and should implement the
above recommendation. Individual clinical practices vary by their patient
population, their setting, and available resources in their clinical practice
and community. Because of this, how individual health care practices imple-
ment the standard of care and the level at which it is done may vary. Never-
theless, as this report describes, the committee believes that it is possible for
all providers to meet this standard in some way. This report identifies tools
and techniques already in use by leading oncology providers to do so. There
are many actions that can be taken now to identify and deliver needed psy-
chosocial health services, even as the health care system works to improve
their quantity and effectiveness. The committee believes that the inability to
solve all psychosocial problems permanently should not preclude attempts
to remedy as many as possible—a stance akin to oncologists’ commitment
to treating cancer even when the successful outcome of every treatment is
not assured. Patient education and advocacy organizations can play a key
role in bringing this about.
Recommendation 3: Patient and family education. Patient education
and advocacy organizations should educate patients with cancer and
their family caregivers to expect, and request when necessary, cancer
care that meets the standard for psychosocial care. These organizations
should also continue their work on strengthening the patient side of the
patient–provider partnership. The goals should be to enable patients
to participate actively in their care by providing tools and training in
how to obtain information, make decisions, solve problems, and com-
municate more effectively with their health care providers.
A large-scale demonstration of the implementation of the standard of care
at various sites would provide useful information about how to achieve
its implementation more efficiently; reveal approaches to implementation
in both resource-rich and non-resource-rich environments; document ap-
proaches for successful implementation among vulnerable groups, such
as those with low socioeconomic status, ethnic minorities, those with low
health literacy, and the socially isolated; and identify different models for
reimbursement. A demonstration could also be used to examine how vari-
ous types of personnel can be used to perform specific interventions encom-
passed by the standard and how those personnel can best be trained.

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12 CANCER CARE FOR THE WHOLE PATIENT
Recommendation 4: Support for dissemination and uptake. The Na-
tional Cancer Institute, the Centers for Medicare & Medicaid Services
(CMS), and the Agency for Healthcare Research and Quality (AHRQ)
should, individually or collectively, conduct a large-scale demonstra-
tion and evaluation of various approaches to the efficient provision of
psychosocial health care in accordance with the standard of care. This
program should demonstrate how the standard can be implemented in
different settings, with different populations, and with varying person-
nel and organizational arrangements.
Because policies set by public and private purchasers, oversight bodies, and
other health care leaders shape how health care is accessed, what services
are delivered, and the manner in which they are delivered, group purchasers
of health care coverage and health plans should take a number of actions to
support the interventions necessary to deliver effective psychosocial health
services. The National Cancer Institute, CMS, and AHRQ also should
spearhead the development and use of performance measures to improve
the delivery of these services.
Recommendation 5: Support from payers. Group purchasers of health
care coverage and health plans should fully support the evidence-
based interventions necessary to deliver effective psychosocial health
services:
• Group purchasers should include provisions in their contracts
and agreements with health plans that ensure coverage and reim-
bursement of mechanisms for identifying the psychosocial needs
of cancer patients, linking patients with appropriate providers
who can meet those needs, and coordinating psychosocial ser-
vices with patients’ biomedical care.
• Group purchasers should review cost-sharing provisions that
affect mental health services and revise those that impede cancer
patients’ access to such services.
• Group purchasers and health plans should ensure that their cov-
erage policies do not impede cancer patients’ access to providers
with expertise in the treatment of mental health conditions in
individuals undergoing complex medical regimens such as those
used to treat cancer. Health plans whose networks lack this
expertise should reimburse for mental health services provided
by out-of-network practitioners with this expertise who meet
the plan’s quality and other standards (at rates paid to similar
providers within the plan’s network).

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SUMMARY 1�
• Group purchasers and health plans should include incentives
for the effective delivery of psychosocial care in payment reform
programs—such as pay-for-performance and pay-for-reporting
initiatives—in which they participate.
With respect to the above recommendation, “group purchasers” in-
clude purchasers in the public sector (e.g., Medicare and Medicaid) as
well as group purchasers in the private sector (e.g., employer purchasers).
Mental health care providers “with expertise in the treatment of mental
health conditions in individuals undergoing complex medical regimens such
as those used to treat cancer” include mental health providers who possess
this expertise through formal education (such as specialists in psychoso-
matic medicine), as well as mental health care providers who have gained
expertise though their clinical experiences, such as mental health clinicians
collocated with and part of an interdisciplinary oncology practice.
Recommendation 6: Quality oversight. The National Cancer Institute,
CMS, and AHRQ should fund research focused on the development
of performance measures for psychosocial cancer care. Organizations
setting standards for cancer care (e.g., National Comprehensive Can-
cer Network, American Society of Clinical Oncology, American Col-
lege of Surgeons’ Commission on Cancer, Oncology Nursing Society,
American Psychosocial Oncology Society) and other standards-setting
organizations (e.g., National Quality Forum, National Committee for
Quality Assurance, URAC, Joint Commission) should
• Create oversight mechanisms that can be used to measure and
report on the quality of ambulatory oncology care (including
psychosocial health care).
• Incorporate requirements for identifying and responding to psy-
chosocial health care needs into their protocols, policies, and
standards.
• Develop and use performance measures for psychosocial health
care in their quality oversight activities.
Ultimately, the delivery of cancer care that addresses psychosocial needs
depends on having a health care workforce with the attitudes, knowledge,
and skills needed to deliver such care. Thus, professional education and
training should not be ignored as a factor influencing health practitioners’
practices. The committee further recommends

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1� CANCER CARE FOR THE WHOLE PATIENT
Recommendation 7: Workforce competencies.
a. Educational accrediting organizations, licensing bodies, and pro-
fessional societies should examine their standards and licensing
and certification criteria with an eye to identifying competencies
in delivering psychosocial health care and developing them as fully
as possible in accordance with a model that integrates biomedical
and psychosocial care.
b. Congress and federal agencies should support and fund the estab-
lishment of a Workforce Development Collaborative on Psycho-
social Care during Chronic Medical Illness. This cross-specialty,
multidisciplinary group should comprise educators, consumer and
family advocates, and providers of psychosocial and biomedical
health services and be charged with
– identifying, refining, and broadly disseminating to health care ed-
ucators information about workforce competencies, models, and
preservice curricula relevant to providing psychosocial services
to persons with chronic medical illnesses and their families;
– adapting curricula for continuing education of the existing work-
force using efficient workplace-based learning approaches;
– drafting and implementing a plan for developing the skills of
faculty and other trainers in teaching psychosocial health care
using evidence-based teaching strategies; and
– strengthening the emphasis on psychosocial health care in edu-
cational accreditation standards and professional licensing and
certification exams by recommending revisions to the relevant
oversight organizations.
c. Organizations providing research funding should support assess-
ment of the implementation in education, training, and clinical
practice of the workforce competencies necessary to provide psy-
chosocial care and their impact on achieving the standard for such
care set forth in recommendation 1.
In addition, improving the delivery of psychosocial health services requires
targeted research. This research should aim to clarify the efficacy and ef-
fectiveness of new and existing services and to identify ways of improving
the delivery of these services to various populations in different geographic
locations and with varying levels of resources. Doing so would be facilitated
by clarifying and standardizing the often unclear and inconsistent language
used to refer to psychosocial services.
Recommendation 8: Standardized nomenclature. To facilitate re-
search on and quality measurement of psychosocial interventions, the

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SUMMARY 1�
National Institutes of Health (NIH) and AHRQ should create and lead
an initiative to develop a standardized, transdisciplinary taxonomy and
nomenclature for psychosocial health services. This initiative should
aim to incorporate this taxonomy and nomenclature into such data-
bases as the National Library of Medicine’s Medical Subject Headings
(MeSH), PsycINFO, CINAHL (Cumulative Index to Nursing and Al-
lied Health Literature), and EMBASE.
Recommendation 9: Research priorities. Organizations sponsoring
research in oncology care should include the following areas among
their funding priorities:
• Further development of reliable, valid, and efficient tools and
strategies for use by clinical practices to ensure that all patients
with cancer receive care that meets the standard of psychosocial
care set forth in recommendation 1. These tools and strategies
should include
– approaches for improving patient–provider communication
and providing decision support to cancer patients;
– screening instruments that can be used to identify individu-
als with any of a comprehensive array of psychosocial health
problems;
– needs assessment instruments to assist in planning psychoso-
cial services;
– illness and wellness management interventions; and
– approaches for effectively linking patients with services and
coordinating care.
• Identification of more effective psychosocial services to treat
mental health problems and to assist patients in adopting and
maintaining healthy behaviors, such as smoking cessation, exer-
cise, and dietary change. This effort should include
– identifying populations for whom specific psychosocial ser-
vices are most effective, and psychosocial services most effec-
tive for specific populations; and
– development of standard outcome measures for assessing the
effectiveness of these services.
• Creation and testing of reimbursement arrangements that will
promote psychosocial care and reward its best performance.
Research on the use of these tools, strategies, and services should also
focus on how best to ensure delivery of appropriate psychosocial ser-
vices to vulnerable populations, such as those with low literacy, older
adults, the socially isolated, and members of cultural minorities.

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1� CANCER CARE FOR THE WHOLE PATIENT
Finally, the scope of work for this study included making recommenda-
tions for how to evaluate the impact of this report. The committee believes
evaluation activities would be useful in promoting action on the preceding
recommendations, and makes the following recommendation to that end.
Recommendation 10. Promoting uptake and monitoring progress.
The National Cancer Institute/NIH should monitor progress toward
improved delivery of psychosocial services in cancer care and report its
findings on at least a biannual basis to oncology providers, consumer
organizations, group purchasers and health plans, quality oversight
organizations, and other stakeholders. These findings could be used
to inform an evaluation of the impact of this report and each of its
recommendations. Monitoring activities should make maximal use of
existing data collection tools and activities.
Following are examples of the approaches that could be used for these
monitoring efforts.
To determine the extent to which patients with cancer receive psycho-
social services consistent with the standard of care and its implementation
as set forth in recommendations 1 and 2, the Department of Health and
Human Services (DHHS) could
• Conduct an annual, patient-level, process-of-care evaluation us-
ing a national sample and validated, reliable instruments, such as
the Consumer Assessment of Healthcare Providers and Systems
(CAHPS) instruments.
• Add measures of the quality of psychosocial health care for patients
(and families as feasible) to existing surveys, such as the Centers for
Disease Control and Prevention’s Behavioral Risk Factor Surveil-
lance System (BRFSS) and CAHPS.
• Conduct annual practice surveys to determine compliance with the
standard of care.
• Monitor and document the emergence of performance reward ini-
tiatives (e.g., content on psychosocial care in requests for proposals
[RFPs] and pay-for-performance initiatives that specifically include
incentives for psychosocial care).
For recommendation 3 on patient and family education, DHHS could
• Routinely query patient education and advocacy organizations
about their efforts to educate patients with cancer and their family
caregivers about what to expect from, and how to request when

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SUMMARY 1�
necessary, oncology care that meets the standard of care set forth
in recommendation 1.
• In surveys conducted to assess the extent to which oncology care
meets the standard of care, include questions to patients and care-
givers about their knowledge of how oncology providers should
address their psychosocial needs (the standard of care) and their
actual experiences with receiving such care.
• Use an annual patient-level process-of-care evaluation (such as
CAHPS) to identify patient education experiences.
For recommendation 4 on dissemination and uptake of the standard
of care, DHHS could report on the extent to which the National Cancer
Institute/CMS/AHRQ had conducted demonstration projects and how they
had disseminated the findings from those demonstrations.
For recommendation 5 on support from payers, DHHS/NCI and/or
advocacy, provider, or other interest groups could
• Survey national organizations (e.g., America’s Health Insurance
Plans, the National Business Group on Health) about their aware-
ness of and/or advocacy activities related to the recommendations
in this report and the initiation of appropriate reimbursement
strategies/activities.
• Monitor and document the emergence of performance reward ini-
tiatives (e.g., RFP content on psychosocial care, pay for perfor-
mance that specifically includes incentives for psychosocial care).
• Evaluate health plan contracts and state insurance policies for cov-
erage, copayments, and carve-outs for psychosocial services.
• Assess coverage for psychosocial services for Medicare beneficiaries.
For recommendation 6 on quality oversight, DHHS could
• Examine the funding portfolios of NIH, CMS, AHRQ, and other
public and private sponsors of quality-of-care research to evaluate
the funding of quality measurement for psychosocial health care as
part of cancer care.
• Query organizations that set standards for cancer care (e.g., the
National Comprehensive Cancer Network, the American Society
of Clinical Oncology [ASCO], the American College of Surgeons
Commission on Cancer, the Oncology Nursing Society, the Ameri-
can Psychosocial Oncology Society) and other standards-setting
organizations (e.g., the National Quality Forum, the National

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1� CANCER CARE FOR THE WHOLE PATIENT
Committee for Quality Assurance, the URAC, the Joint Commis-
sion) to determine the extent to which they have
– created oversight mechanisms used to measure and report on
the quality of ambulatory cancer care (including psychosocial
care);
– incorporated requirements for identifying and responding to
psychosocial health care needs into their protocols, policies, and
standards in accordance with the standard of care put forth in
this report; and
– used performance measures of psychosocial health care in their
quality oversight activities.
For recommendation 7 on workforce competencies, DHHS could
• Monitor and report on actions taken by Congress and federal
agencies to support and fund the establishment of a Workforce
Development Collaborative on Psychosocial Care during Chronic
Medical Illness.
• Review board exams for oncologists and primary care providers to
identify questions relevant to psychosocial care.
• Review accreditation standards for educational programs used to
train health care personnel to identify content requirements rel-
evant to psychosocial care.
• Review certification requirements for clinicians to identify those
requirements relevant to psychosocial care.
• Examine the funding portfolios of the NIH, CMS, AHRQ, and
other public and private sponsors of quality-of-care research to
quantify the funding of initiatives aimed at assessing the incorpora-
tion of workforce competencies in education, training, and clinical
practice and their impact on achieving the standard for psychoso-
cial care.
For recommendation 8 on standardized nomenclature and recommen-
dation 9 on research priorities, DHHS could
• Report on NIH/AHRQ actions to develop a taxonomy and nomen-
clature for psychosocial health services.
• Examine the funding portfolios of public and private research
sponsors to assess whether funding priorities included the recom-
mended areas.

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SUMMARY 1�
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SUMMARY 21
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2�
1
The Psychosocial Needs
of Cancer Patients
CHAPTER SUMMARY
Fully �1 percent of all Americans can expect to be diagnosed with
cancer at some point in their life. They and their lo�ed ones can take
some comfort from the fact that o�er the past two decades, substantial
progress in the early detection and treatment of multiple types of cancer
has significantly extended the life expectancy of patients to the point that
many people diagnosed with cancer can be cured, and the illness of many
others can be managed as a chronic disease. E�en so, people with cancer
face the risk of substantial and permanent physical impairment, disability,
and inability to perform routine acti�ities of daily li�ing, as well as the
psychological and social problems that can result from the diagnosis and
its sequelae.
Additionally worrisome, the remarkable ad�ances in biomedical care
for cancer ha�e not been matched by achie�ements in pro�iding high-
quality care for the psychological and social effects of cancer. Numerous
cancer sur�i�ors and their caregi�ers report that cancer care pro�iders
did not understand their psychosocial needs, failed to recognize and ade-
quately address depression and other symptoms of stress, were unaware of
or did not refer them to a�ailable resources, and generally did not consider
psychosocial support to be an integral part of quality cancer care.
In response to a request from the National Institutes of Health, this
report puts forth a plan delineating actions that cancer care pro�iders,
health policy makers, educators, health insurers, health plans, researchers
and research sponsors, and consumer ad�ocates should take to better re-
spond to the psychological and social stresses faced by people with cancer,
and thereby maximize their health and health care.

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2� CANCER CARE FOR THE WHOLE PATIENT
THE REACH OF CANCER
More than ten and a half million people in the United States live with
a past or current diagnosis of some type of cancer (Ries et al., 2007);
1.4 million1 Americans are projected to receive a new diagnosis of cancer
in 2007 alone (Jemal et al., 2007). Reflecting cancer’s reach, 1 in 10 Ameri-
can households now includes a family member who has been diagnosed or
treated for cancer within the past 5 years (USA Today et al., 2006), and
41 percent of Americans can expect to be diagnosed with cancer at some
point in their life (Ries et al., 2007).
While more than half a million Americans will likely die from cancer
in 20072 (Jemal et al., 2007), numerous others are being effectively treated
and will survive cancer-free for many years. Still others will have a type of
cancer that is chronic and that will need to be controlled by intermittent or
continuous treatment, not unlike patients with heart disease or diabetes.
Although cancers historically have not been thought of as such, they
increasingly meet the definition of chronic diseases: “They are permanent,
leave residual disability, are caused by nonreversible pathological alteration,
require special training of the patient for rehabilitation, or may be expected
to require a long period of supervision, observation, or care” (Timmreck,
1987:100).3 As described in the next section, many of the more than 100
specific types of cancer frequently leave patients with residual disability
and/or nonreversible pathological alteration, and require long periods of
supervision, observation, or care. Treatment protocols by themselves for
some cancers—such as breast, prostate, and colon cancer (among the most
common types of cancers)—can last months; individuals on certain oral
chemotherapeutic regimens for breast cancer or some forms of leukemia
sometimes remain on chemotherapy for years. Even after completing treat-
ment, cancer survivors (particularly survivors of pediatric cancers) often
require care from multiple specialists and primary care providers to manage
the long-term sequelae of the illness and its treatment. Thus the trajectories
of various cancers vary according to the type of cancer, stage at diagnosis,
and other factors (see Figure 1-1).
In addition to coping with the worry and stress brought about by
their diagnosis, patients with cancer and their families must cope with the
stresses induced by physically demanding (and also often life-threaten-
ing) treatments for the illness and the permanent health impairment and
1 This figure excludes non-melanoma skin cancers and in situ carcinomas except in the
urinary bladder.
2 One in four deaths in the United States is due to cancer—the leading cause of death for
those under age 85 (Jemal et al., 2007).
3 The definition of chronic disease used in the National Library of Medicine’s Medical Subject
Headings (MeSH).

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS 2�
Diagnosis and
Staging
Diagnosis and
Staging
Palliative
Treatment
Palliative
Treatment
Treatment With
Intent to Cure
Treatment with
Intent to Cure
Cancer-Free
Survival
Managed
Chronic or
Intermittent
Disease
Recurrence/
Second Cancer
Recurrence/
Second Cancer
Cancer Care Trajectories
DeathDeath
Treatment Failure
1-1
R01103
Cancer Patient/Cancer Suvivor
Late effects management and
surveillance for recurrence
and second cancers
Survivorship Care
disability, fatigue, and pain that can result, even when there are no longer
any signs of the disease. These effects contribute to emotional distress and
mental health problems among cancer patients, and together can lead to
substantial social problems, such as the inability to work and reduced in-
come. These effects are magnified in the presence of any psychological and
social stressors that predate the onset of cancer, such as low income, lack
of health insurance, and weak or absent social supports. Indeed, physical,
psychological, and social stressors are often intertwined, both resulting
from and contributing to each other.
These effects of cancer and its treatment are also influenced by the
physical and developmental age of patients and their caregivers. More
than half (approximately 60 percent) of individuals who have ever been
diagnosed with cancer are age 65 or older; 39 percent are young and
middle-aged adults aged 20–64; and 1 percent are age 19 or younger (NCI,
undated). Among the large portion of older adults within the population
living with cancer, experts in cancer care and aging note that there is great
heterogeneity. Although “health and well-being, social circumstances, living
arrangements, and age-related changes resulting in diminished psychologic
FIGURE 1-1 Cancer care trajectories.
SOURCE: Adapted from IOM and NRC, 2006.

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2� CANCER CARE FOR THE WHOLE PATIENT
and physical functioning vary by individual and not by chronological age”
(Yancik and Ries, 2000:17), older adults with cancer are more likely to
present with a preexisting chronic disease and increased functional impair-
ment and disability, which can compound the stresses imposed by cancer
(Hewitt et al., 2003). Evidence also indicates that older adults are at greater
risk than younger adults for difficulties with health-related decision making
(Finucane et al., 2002). Taken together, older adults may have greater need
for psychosocial services. At the other end of the age continuum, the great
cognitive, emotional, and developmental (as well as physical) variations
among children affect the extent to which they can fully understand the
implications of their disease and be involved in treatment decision making,
how they cope with the physical pain and distress accompanying cancer
and its treatment, and the resources available to help them cope (Patenaude
and Kupst, 2005).
CANCER-INDUCED PHYSICAL STRESSORS
Health Impairment, Disability, Fatigue, and Pain
As a result of advances in early detection and treatment, in the past
two decades the 5-year survival rate for the 15 most common cancers has
increased for all ages—from 43 to 64 percent for men and from 57 to 64
percent for women (Jemal et al., 2004). However, these improvements in
survival are sometimes accompanied by permanent damage to patients’
physical health. In addition to the damage caused by the cancer itself, the
side effects of chemotherapy, radiation, hormone therapy, surgery, and
other cancer treatments often lead to substantial permanent impairment of
several organ systems, with resultant disability (Aziz and Rowland, 2003;
Oeffinger and Hudson, 2004).
Impairment and Disability
Compared with people without a history of cancer, adults with cancer
(or with a history of cancer) more frequently report having fair or poor
health (30 percent), other chronic medical conditions (42 percent), one or
more limitations in the ability to perform activities of daily living (11 per-
cent), other functional disabilities (58 percent), and (among those under age
65) an inability to work because of a health condition (17 percent) (Hewitt
et al., 2003). These numbers may reflect in part the older age of individuals
with a diagnosis of cancer; 61 percent of those with a history of cancer are
more than 65 years of age (IOM and NRC, 2006). Yet one-third of those
with a history of cancer who report limitations in activities of daily living
or other functional areas identify cancer as the cause of their limitation,

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS 2�
and cancer survivors in all age groups report higher rates of chronic illness
compared with their counterparts with no history of the illness. National
Health Interview Survey (NHIS) data from 1998, 1999, and 2000 indicate
that a medical history of cancer at least doubles an individual’s likelihood
of poor health and disability. Individuals with a history of cancer also have
significantly higher rates of other chronic illnesses, such as cardiovascular
disease. When cancer and another chronic illness co-occur, poor health and
disability rates are 5 to 10 times higher than otherwise expected (Hewitt
et al., 2003).
Survivors of childhood cancer similarly have much higher than aver-
age rates of chronic illness beginning in their early or middle adult years.
A retrospective study of more than 10,000 adults who had been diagnosed
with certain cancers4 before age 21 and who survived at least 5 years after
diagnosis found that 62 percent of those between the ages of 18 and 48
(mean age 26.6 years) had at least one chronic health condition; 27 percent
had a condition that was severe, life-threatening (e.g., kidney failure or need
for dialysis, seizure disorder, congestive heart failure), or disabling. This
was on average 17.5 years after diagnosis (range 6–31 years). Even 30 years
after diagnosis, almost three-fourths had a chronic health condition; more
than 40 percent had a condition that was severe, life-threatening, disabling,
or fatal; and 39 percent had multiple conditions. None of these estimates
include mental health problems (Oeffinger et al., 2006).
Cognitive impairment also is found in some children and adults treated
for cancer. Studies of children treated for acute lymphoblastic leukemia
and brain tumors (the two most common childhood cancers), for example,
indicate that impairment of cognitive abilities (e.g., attention and con-
centration, working memory, information processing speed, sequencing
ability, and visual–motor integration) is common (IOM and NRC, 2003;
Butler and Mulhern, 2005). These late effects of cancer and treatment can
contribute to problems in reading, language development, and ability to
perform complex mathematics. Children can have difficulties doing work
in the classroom and require more time to complete homework. They
can also have problems in such areas as handwriting, organizing material
on a page, lining up columns for arithmetic problems, and being able to
complete computer-readable standardized testing forms—all of which can
affect school performance and learning. Even if cancer survivors are initially
asymptomatic at reentry to school, neurocognitive deficits may develop
years later (IOM and NRC, 2003).
Cognitive impairment has also been documented in adults. Although the
cause of such impairment (dubbed “chemobrain” by some cancer survivors)
4 Leukemia, central nervous system tumor, Hodgkins disease, non-Hodgkins lymphoma,
Wilms’ tumor, neuroblastoma, sarcoma, or bone tumor.

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2� CANCER CARE FOR THE WHOLE PATIENT
is not yet clear, women treated with chemotherapy for breast cancer, for
example, show subtle declines in global cognitive functioning, most particu-
larly in language skills (e.g., word-finding ability), short-term memory, and
spatial abilities; lesser impairment is found in their working and long-term
memory and their speed of information processing (Stewart et al., 2006).
Similar impairment of verbal memory and other executive cognitive func-
tions has been found in adults treated for lung, colorectal, lymphoma, and
other types of cancer; however, different types of cancer and their treatment
vary in their cognitive effects (Anderson-Hanley et al., 2003).
Fatigue
Fatigue is the most frequently reported symptom of cancer and is
identified as causing the greatest interference with patients’ daily activi-
ties, although estimates of rates of fatigue among individuals with cancer
vary greatly (ranging, for example, from 4 percent in breast cancer pa-
tients prior to the start of chemotherapy to 91 percent in breast cancer
patients after surgery and chemotherapy and before bone marrow trans-
plantation). Prevalence rates are difficult to interpret, however, because
there is no consensus on a standard definition of fatigue, and studies use
different criteria for defining its presence and severity. Fatigue is theorized
to arise from a complex combination of poorly understood physical and
psychological effects of illness that may be different in each patient (Carr
et al., 2002). Nonetheless, it is widely recognized as a frequent side effect
of both cancer and its treatment. It is different from the fatigue experi-
enced by healthy individuals in that it persists even after rest and sleep.
A 2002 review of the evidence by the Agency for Healthcare Research
and Quality (AHRQ) found that mechanisms of cancer-related fatigue
have been poorly explored, and current treatment options for fatigue are
limited5 (Carr et al., 2002). Fatigue among non-ill individuals generally
is manifested by compromised problem solving, decreased motivation and
vigor in the completion of required tasks, and overall diminished capacity
for work (IOM, 2004). These effects are reported by patients with cancer
as well, who also report that fatigue interferes with their physical and
mental functioning (Carr et al., 2002).
5 The report did identify Epoetin alfa as effective in treating chemotherapy-induced anemia
and resultant fatigue, and noted that there is some evidence that exercise can reduce fatigue
in women with breast cancer (Carr et al., 2002).

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS 2�
Pain
An estimated one-third to one-half of patients undergoing active treat-
ment for cancer experience pain resulting from the illness, its treatment, or
co-occurring illnesses. This pain often is not fully eliminated despite the ad-
ministration of analgesics and other therapies, in part because it is often un-
dertreated. Moreover, pain may continue to be a problem even when there
is no longer any sign of cancer. AHRQ’s 2002 evidence review documented
the contribution of cancer-related pain to fatigue, impaired function, and a
range of other psychosocial dimensions of health (Carr et al., 2002).
Limitations in Activities of Daily Living
The physical impairments and disabilities, as well as fatigue and pain,
experienced by patients with cancer often lead to an inability to perform the
routine activities of daily living that most people take for granted. Activities
of daily living are defined as those age-appropriate physical and cognitive
activities that individuals generally perform for themselves as part of their
daily self-care. For adults, these include such activities as bathing, using the
toilet, dressing, preparing meals, and feeding oneself. Instrumental activities
of daily living include such tasks as using a telephone, shopping, paying
bills, and using transportation. In the United States, adults with a prior
diagnosis of cancer6 are more likely than those of similar age, sex, and edu-
cational level without such a diagnosis to report needing help with activities
of daily living (Yabroff et al., 2004). NHIS data for 1998–2000 show that
cancer survivors without any other chronic illnesses were more than twice
as likely as individuals without a history of cancer or other chronic illness
to report limitations in their ability to perform activities of daily living and
significantly more likely to have other functional limitations (Hewitt et al.,
2003). Long-term survivors of childhood cancer are at particular risk.
Nearly 20 percent of more than 11,000 such individuals (median age 26,
range 5–56) diagnosed between 1970 and 1986 who survived 5 years or
more reported limitations in activities such as lifting heavy objects; running
or participating in strenuous sports; carrying groceries; walking uphill or
climbing a flight of stairs; walking a block; or eating, dressing, bathing, or
using the toilet. These limitations occurred at nearly twice the rate found
in their siblings without cancer. Fewer (3, 7, and 8 percent, respectively)
reported limitations in ability to eat, bathe, dress, or get around their home
by themselves; perform everyday household chores; or hold a job or attend
school. However, these rates were five to six times higher than those seen
in their siblings without cancer (Ness et al., 2005).
6 Not including non-melanoma skin cancers.

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�0 CANCER CARE FOR THE WHOLE PATIENT
PSYCHOSOCIAL PROBLEMS
The emotional stress of living with a diagnosis of cancer and its treat-
ment, fear of recurrence, and the distress imposed by living with the day-to-
day physical problems described above can create new or worsen preexisting
psychological distress for people living with cancer, their families, and other
informal caregivers. Physical and psychological impairments can also lead
to substantial social problems, such as the inability to work or fulfill other
normative social roles.
Emotional, Mental Health, and Developmental Problems
Emotional and Mental Health Problems
Although the majority of cancer patients and their families have normal
psychological functioning (Kornblith, 1998), distressed psychological states
are common in individuals with cancer. The prevalence of psychological
distress varies by type of cancer, time since diagnosis, degree of physical
and role impairment, amount of pain, prognosis, and other variables. In one
U.S. comprehensive cancer center’s study of nearly 4,500 patients aged 19
and older, the prevalence of significant psychological distress ranged from
29 to 43 percent for patients with the 14 most common types of cancer7
(Zabora et al., 2001). These rates are consistent with those found in sub-
sequent studies of diverse populations with cancer that have reported high
rates of psychological symptoms meeting criteria for such clinical diagnoses
as depression, adjustment disorders, and anxiety (Spiegel and Giese-Davis,
2003; Carlsen et al., 2005; Hegel et al., 2006). Studies have also docu-
mented the presence of symptoms meeting the criteria for post-traumatic
stress disorder (PTSD) and post-traumatic stress symptoms (PTSS) in adults
and children with cancer, as well as in the parents of children diagnosed
with the illness (Kangas et al., 2002; Bruce, 2006). Indeed, experiencing a
life-threatening medical illness or observing it in another to whom one is
close can be a qualifying event for PTSD according to the American Psychi-
atric Association’s Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV-TR) (APA, 2000).
Even patients who do not develop clinical syndromes may experience
worries, fears, and other forms of psychological stress that cause them
significant distress. Chronic illness can bring about guilt, feelings of loss of
control, anger, sadness, confusion, and fear (Charmaz, 2000; Stanton et al.,
2001). Anxiety, mood disturbance, fear of recurrence, concerns about body
7 Lung, brain, Hodgkin’s, pancreas, lymphoma, liver, head and neck, adenocarcinoma,
breast, leukemia, melanoma, colon, prostate, and gynecological.

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS �1
image, and communication and other problems with family members are
common in cancer patients as well (Kornblith, 1998). Patients may also
experience more generalized worry; fear for the future; inability to make
plans; uncertainty and a heightened sense of vulnerability; and other wor-
ries, such as about the possible development of a second cancer, changes in
sexual function and reproductive ability, and changes in one’s role within
the family and other relationships (IOM and NRC, 2006). Moreover, can-
cer patients can face spiritual and existential issues involving their faith,
their perceived relationship with God, and the possibility and meaning of
death. Some cancer survivors report feelings of anger, isolation, and dimin-
ished self-esteem in response to such stress (NCI, 2004).
Family members also have psychological needs (Lederberg, 1998). The
diagnosis of a life-threatening illness for a family member creates fear of
losing the loved one and concern about the suffering he or she will endure.
Family members’ psychological distress can be as severe as that of the pa-
tient. A meta-analysis of studies of psychological distress in both patients
and their informal caregivers (predominantly spouses or partners) found
that the psychological distress of patients and their informal caregivers
generally was parallel over time, although when the patient received treat-
ment, caregivers experienced more distress than the patient (Hodges et al.,
2005). Studies of partners of women with breast cancer (predominantly
husbands, but also “significant others,” daughters, friends, and others)
find that partners’ mental health correlates positively with the anxiety, de-
pression, fatigue, and symptom distress of women with breast cancer and
that the effects are bidirectional (Segrin et al., 2005, 2007). Thus, helping
family members to manage their distress may have a beneficial effect on the
distress level of patients.
Stress is particularly great for parents of children with cancer. Studies
consistently have shown that parents have higher rates of PTSD and PTSS
than either their children or adult cancer survivors, suggesting that the
experience of parenting a child with cancer may be more traumatic than
actually having the illness (Bruce, 2006). Children of cancer patients also
are a vulnerable group, with frequent psychological problems, acting-out
behaviors, and problems in school (Lederberg, 1998). Moreover, siblings
of pediatric cancer patients may experience their own fears and anxieties,
and may receive less attention from parents while their brother or sister is
in treatment.
Family members (predominantly) and friends of individuals with cancer
often provide substantial amounts of emotional and logistical support and
hands-on personal and nursing care to their loved ones (Kotkamp-Mothes
et al., 2005; Maly et al., 2005). The estimated value of their nonreimbursed
care and support exceeds $1 billion annually (Hayman et al., 2001). Fur-
ther, when their loved ones experience acute or long-term inability to care

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�2 CANCER CARE FOR THE WHOLE PATIENT
for themselves or to carry out their roles in the family, family members often
step in to take up these roles. Taking on these responsibilities requires con-
siderable adaptation (and readaptation as the course of the disease changes)
on the part of family members. These experiences can add to the stress
resulting from concern about the ill family member. Indeed, this stress, es-
pecially in caregivers compromised by morbidity accompanying their own
aging, can be so substantial that caregivers are afflicted more by depression,
other adverse health effects, and death than are patients themselves (Schultz
and Beach, 1999; Kurtz et al., 2004). Caregivers who provide support to
their spouse and report caregiving strain are 63 percent more likely to die
within 4 years than those who do not provide care to their spouse or who
provide care but report no strain (Schultz and Beach, 1999).
High stress levels in family caregivers also can interfere with their
ability to provide the emotional or logistical support patients need. This
can exacerbate the patient’s stress and lead to the cascading consequences
of elevated stress described above. Because of the changes and necessary
adaptation in the family brought about by the caregiving needs of the pa-
tient, family members are sometimes considered “second-order patients”
(Lederberg, 1998).
De�elopmental Problems
As individuals mature, they typically master and apply certain behav-
ioral skills in their daily life. These skills include, for example, achieving
self-sufficiency and physical, emotional, financial, and social independence
from parents; engaging in satisfying personal relationships of varying inti-
macy and in meaningful work; and performing other normative social roles.
The effects of cancer and its treatment can interrupt and delay the activities
in which individuals typically engage to develop these skills, or can require
temporarily or permanently giving up the skills and activities. As a result,
individuals can experience a range of problems manifested as developmen-
tal delays, regression, or inability to perform social roles. Cancer-induced
inability to perform normative activities can occur at any age. Older adults,
for example, can face unplanned retirement, limitations in grandparenting
abilities, inability to act as caregiver to others in their family, or limitations
in their ability to work.
Children who experience numerous and prolonged hospitalizations
at critical developmental periods are at particular risk for developmental
problems (IOM and NRC, 2003). Adolescents can face a significant loss
of independence and disruption of their social relationships at a time when
they should be developing social and relationship skills critical to successful
functioning in adulthood (NCI, 2004). Physical changes resulting from can-
cer and its treatment—such as hearing loss and vision problems; endocrine

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
disturbances resulting in short stature, delayed puberty, and reproductive
problems; and impaired sexual functioning—also can occur at any age and
interfere with successful development. Adolescents and adult cancer survi-
vors report difficulties in knowing how to plan for the future, for example,
in establishing educational and career aspirations (NCI, 2004). Adolescents
and young adults may have less work experience because of their illness and
be at a competitive disadvantage in the labor market. This situation can be
compounded if their illness or treatment causes disfigurement or requires
some accommodation in the workplace. Revealing a history of cancer to a
prospective employer may result in discrimination. Research has also identi-
fied some limitations in the social functioning of school-age cancer survi-
vors (IOM and NRC, 2003). Children may return to their social network
at school and beyond without hair, with amputations, or with weight gain
or other physical changes resulting from their disease or its treatment. They
also may have developmental problems that require attention and need help
in reentering social relationships.
Social Problems
The physical and psychological problems described above can be ex-
acerbated by or produce significant new social problems. Financial stress
resulting from low income, the cost of health care, or a lack of health insur-
ance, as well as reduced employment and income, can result in substantial
stress. While the fundamental resolution of such social problems is beyond
the abilities of health care providers,8 evidence described below and in the
next chapters shows why attention to these problems is an integral part of
good-quality health care and how they can be addressed within the con-
straints of clinical practices.
Financial Stress
In 2003, nearly one in five (12.3 million) people with chronic condi-
tions9 lived in families that had problems paying medical bills (Tu, 2004);
63 percent of these individuals also reported problems in paying for rent,
their mortgage, transportation, and food as a result of medical debt (May
and Cunningham, 2004). Consistent with these findings, CancerCare, a
nonprofit agency supporting individuals with cancer, reports that of those
to whom it provides financial grants to pay for transportation, 18 and 11
8 And beyond the scope of this report.
9 Cancer, as well as asthma, arthritis, diabetes, chronic obstructive pulmonary disease,
heart disease, hypertension, benign prostate enlargement, abnormal uterine bleeding, and
depression.

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�� CANCER CARE FOR THE WHOLE PATIENT
percent, respectively, cited skipping medications or canceling a medical ap-
pointment in the past 3 months because of financial problems. The 2006
National Survey of U.S. Households Affected by Cancer also found that
one in four families in which a member of the household had cancer in
the past 5 years said the experience led the patient to use up all or most
of his or her savings; 13 percent had to borrow money from their relatives
to pay bills; and 10 percent were unable to pay for basic necessities such
as food, heat, or housing. Seven percent took out another mortgage on
their home or borrowed money, and 3 percent declared bankruptcy. Eight
percent delayed or did not receive care because of the cost. As would be
expected, the financial consequences were worse for those without health
insurance: more than one in four delayed or decided not to get treatment
because of its cost; 46 percent used all or most of their savings to pay for
treatment; 41 percent were unable to pay for basic necessities; and 6 percent
filed for bankruptcy (USA Today et al., 2006). About 5 percent of the 1.5
million American families who filed for bankruptcy in 2001 reported that
medical costs associated with cancer contributed to their financial problems
(Himmelstein et al., 2005).
Not surprisingly, members of the American Society of Clinical Oncol-
ogy (ASCO), the Oncology Nursing Society (ONS), and the Association of
Oncology Social Work (AOSW) report financial needs as a frequent subject
of patient inquiries (Matthews et al., 2004). The American Cancer Society
(ACS) and CancerCare both receive and respond to a large number of
patient requests for financial assistance. In fiscal year 2006, 3,482 patients
contacting CancerCare received $1,812,206 for unmet financial needs such
as child care, home care, and living expenses. In the first 8 months of fiscal
year 2007, 2,069 received $727,745 in such financial assistance. In fiscal
year 2006, the ACS responded to 41,378 requests for financial assistance
to help patients manage the costs of durable medical equipment (3,713),
medications (13,013), prosthetics (128), rent (459), scholarships (2,141),
utilities (657), wigs (1,674), other medical expenses (1,763), and other
needs (17,830). Both agencies report that requests for financial assistance
are one of the most common reasons people contact them, and often there
are not enough resources to meet these needs.10,11
Financial needs can arise from the high costs of medical treatment,
drugs, and other health support needs, such as medical supplies that are
not covered by insurance and/or are beyond an individual’s income level.
This financial stress is compounded when a patient suffers a job loss, is not
working during periods of treatment, or lacks health insurance.
10 Personal communication, Diane Blum, Executive Director, CancerCare, June 8, 2007.
11 Personal communication, Katherine Sharpe, American Cancer Society, June 8, 2007.

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
Lack of or Inadequate Health Insurance
An estimated 44.8 million Americans (15.3 percent of the population)
were without health insurance in 2005 (U.S. Census Bureau, 2007), and
many more have only modest insurance coverage coupled with an income
level that limits their ability to pay out-of-pocket health care costs (May
and Cunningham, 2004; Tu, 2004). The rate of uninsurance among cancer
survivors is no higher than that among the general population (and is in fact
a bit lower—11.3 percent among the nonelderly),12 and among nonaged
cancer survivors also is comparable to that observed in populations with
other chronic illnesses, such as cardiovascular disease (12.1) and diabetes
(12.6) (IOM and NRC, 2006). However, these figures offer little comfort.
The adverse effects of no or inadequate insurance are well documented and
include poorer health prior to receipt of care, delayed or no treatment, fail-
ure to get needed prescription medications, and worse outcomes of medical
treatment for people with cancer as well as other diseases (IOM, 2002; Tu,
2004; IOM and NRC, 2006).
Further, analysis of the 2003 national Community Tracking Study
Household Survey found that a majority of chronically ill working-age
adults who reported health care cost and access problems had private
health insurance. Thirteen percent of those with private insurance had out-
of-pocket health care costs (not including costs for insurance premiums)
that exceeded 5 percent of their income, and 16 percent lived in families
that had problems paying their medical bills. Among those who were
privately insured but had low income, more than one-third had problems
paying their medical bills. Among the privately insured with such problems,
10 percent went without needed medical care, 30 percent delayed care, and
43 percent failed to fill needed prescriptions because of cost concerns (Tu,
2004). The National Survey of U.S. Households Affected by Cancer found
that 10 percent of individuals with health insurance reached the limit of
their insurance coverage, and 6 percent lost their coverage as a result of
having cancer (USA Today et al., 2006).
Because health insurance in the United States for those under age 65
is most often obtained through employers, problems with health insurance
are affected by problems with employment (Himmelstein et al., 2005). If
an individual loses his or her job because of cancer, he or she also runs the
risk of losing health insurance coverage—and income.
12 And nearly all (99 percent) of patients over age 65 have health insurance through the
Medicare program.

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�� CANCER CARE FOR THE WHOLE PATIENT
Reduced Employment and Income
In its review of studies of cancer and employment, the 2006 Institute
of Medicine (IOM) report From Cancer Patient to Cancer Sur�i�or: Lost
in Transition found that the effect of having cancer on employment has not
been well studied across all types of cancer. Nevertheless, studies across
different types of cancers and populations have consistently shown that
significant portions of individuals (7 to 70 percent across studies [Spelten
et al., 2002]) stop working or experience a change in employment (reduc-
tion in work hours, interruption of work, change in place of employment)
after being diagnosed or treated for cancer (IOM and NRC, 2006), with
implications for their income. Data from the 2000 NHIS reveal that in the
United States, adults aged 18 and older with a prior diagnosis of cancer13
were less likely than individuals of similar age, sex, and educational levels
to have had a job in the past month, were more likely to have limitations in
the amount or type of work they could do because of health problems, and
(among those with jobs) had fewer days of work in the past year (Yabroff
et al., 2004). In another analysis of NHIS data from 1998–2000, 17 per-
cent of individuals with a history of cancer reported being unable to work,
compared with 5 percent of those without such a history (Hewitt et al.,
2003). A retrospective cohort study carried out in five medical centers in
Pennsylvania and Maryland with 1,435 cancer survivors aged 25–62 who
were working at the time of their diagnosis in 1997–1999 found 41 and 39
percent of males and females, respectively, stopped working during cancer
treatment. Although most (84 percent) returned to work within the 4 years
after diagnosis (73 percent within the first 12 month after diagnosis), a
significant minority (16 percent) did not do so. Of those who returned to
work in the first year, 11 percent quit for cancer-related reasons within the
next 3 years. Overall, 13 percent quit working for cancer-related reasons
within 4 years of diagnosis (Short et al., 2005). Individuals whose jobs
require manual labor or make other physical demands and those with
head and neck cancers, cancers of the central nervous system, and stage IV
blood and lymphatic cancers appear to be especially at risk for reductions
in employment (Spelten et al., 2002; Short et al., 2005). The late effects of
the illness or its treatment in survivors of childhood cancer can also prevent
many from working (Ness et al., 2005; de Boer et al., 2006).
These changes in employment patterns can be a function of shifting
priorities and values after diagnosis, a desire for retirement (consistent with
the older age of most cancer patients), or changes in one’s employer having
nothing to do with the employee (IOM and NRC, 2006). However, many
individuals with cancer report that changes in their employment or their
13 Not including non-melanoma skin cancers.

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
ability to work are a function of changes in their health resulting from their
cancer diagnosis (IOM and NRC, 2006).
OBSTACLES TO MANAGING PSYCHOSOCIAL STRESSORS
In multiple focus groups and interviews, patients with a wide variety
of chronic illnesses, such as diabetes, arthritis, heart disease, chronic ob-
structive lung disease, depression, and asthma, have identified pain, fatigue,
problems with mobility, poor communication with physicians (with resul-
tant poor understanding of their illness and how to manage it), depression
and other negative emotions, stress, lack of family support, financial prob-
lems, loss of a job, and lack of health insurance as obstacles to managing
their illness and health (Wdowik et al., 1997; Riegel and Carlson, 2002;
Bayliss et al., 2003; Jerant et al., 2005). Patients were often unaware of
resources available to help them overcome these problems, but when they
were aware, limitations in mobility, fatigue, pain, transportation problems,
cost issues, and lack of insurance prevented them from taking advantage of
these resources (Jerant et al., 2005). Cancer patients and their health care
providers offer similar reports of these social and psychological obstacles
(IOM and NRC, 2003, 2004; NCI, 2004), which add to the suffering cre-
ated by the illness, prevent adherence to prescribed treatments, and interfere
with patients’ ability to manage their illness and their health. These prob-
lems and the effects of failing to address them are magnified in especially
vulnerable and disadvantaged populations, such as those living in poverty;
those with low literacy; members of cultural minorities; and those over age
65, who are more likely than younger individuals to experience the com-
pounding effects of other chronic conditions that occur with aging.
Some of these stressors (described in the preceding sections) can come
about as a consequence of cancer, others can predate the illness, while still
others are imposed by the health care system itself. Although not all indi-
viduals treated for cancer face these problems, individuals who do so need
the knowledge, skills, and abilities to manage them and function at their
highest possible level. When these resources are not available, the ability to
manage one’s illness and health is decreased.
Lack of Information, Knowledge, and Skills Needed to Manage the Illness
Members of ASCO, ONS, and AOSW report that information and
education about cancer are the support services most frequently requested
by their patients (Matthews et al., 2004). Patients similarly rate information
needs pertaining to their illness and treatments as very important (Boberg
et al., 2003). Yet over the past three decades research has consistently
documented many patients’ and family members’ dissatisfaction with the

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�� CANCER CARE FOR THE WHOLE PATIENT
information and education they receive (Chapman and Rush, 2003) and
how their health care providers communicate with them (Epstein and
Street, 2007). While research has not yet yielded a comprehensive road
map for how best to provide the full array of information needed at various
times during and after cancer treatment, it has illuminated several charac-
teristics of the effective provision of information. For example, information
should be tailored to each patient’s expectations and preferences (e.g., much
detailed information in advance versus less information provided on an as-
needed basis), as well as to the patient’s individual diagnosis and clinical
situation. Evidence also indicates that patients’ wide range of information
needs (e.g., information specific to their type and stage of cancer, treat-
ment, prognosis, rehabilitation, achievement and maintenance of maximal
health, coping, and financial/legal concerns) change over time, for example,
during and after treatment (Rutten et al., 2005; Epstein and Street, 2007).
Further, anxiety decreases satisfaction with information provided. Anxiety
and other side effects of the illness and its treatment, such as pain, need
to be controlled if information is to be useful (Chapman and Rush, 2003).
However, evidence indicates that measures to control such side effects, as
well as more basic practices to meet patients’ information needs effectively,
are not employed; many patients continue to have insufficient information
to help them manage their illness and health (Eakin and Strycker, 2001;
Boberg et al., 2003; Skalla et al., 2004; Mallinger et al., 2005). Fifteen
percent of respondents to the 2006 National Survey of U.S. Households
Affected by Cancer said they had had the experience of leaving a doctor’s
office without getting answers to important questions about their illness
(USA Today et al., 2006).
Related to these findings, members of ASCO, ONS, and AOSW re-
ported that support groups were the second most frequent subject of pa-
tient inquiries about support services (Matthews et al., 2004). Peer support
programs in which people communicate and share experiences with others
having a common personal experience are strong mechanisms for build-
ing one’s “self-efficacy”—the belief that one is capable of carrying out a
course of action to reach a desired goal (Bandura, 1997). Self-efficacy is a
critical determinant of how well knowledge and skills are obtained and is
an excellent predictor of behavior. There is also evidence that self-efficacy
is key to individuals’ successful self-management of a range of chronic ill-
nesses, resulting in improved health outcomes (Lorig et al., 2001; Lorig and
Holman, 2003). However, although peer support programs are widespread,
providers are not always aware of these resources and often do not refer
patients to them (IOM, 2007). Failure to refer patients to these services is
associated with their low use (Eakin and Strycker, 2001).

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
Insufficient Logistical Resources
Even when patients have the information, knowledge, and skills to
cope with their illness, a lack of logistical and material resources, such as
transportation, medical equipment, and supplies, can prevent their use.
As described above, the high costs of medical care (for those with and
without health insurance), together with work reductions and job loss
with a concomitant decrease in income, can make obtaining the needed
resources difficult if not impossible. Families, friends, and other informal
sources of support can provide or help secure many of these resources
(Eakin and Strycker, 2001), but sometimes such sources are unavailable or
overwhelmed by patients’ needs. Oncology physicians, nurses, and social
workers report that transportation in particular is a “paramount concern”
of patients (Matthews et al., 2004:735).
Lack of Transportation
In a 2005 survey, members of AOSW identified transportation as the
third greatest barrier14 to patients and their families receiving good-quality
cancer care (AOSW, 2006). The inability to get to medical appointments,
the pharmacy, the grocery store, health education classes, peer support
meetings, and other out-of-home resources can hinder health care, ill-
ness management, and health promotion. Indicative of this problem, ACS
reports receiving more than 90,000 requests for transportation services
in 2006.15 CancerCare reports that 14,919 patients requested and were
provided $3,005,679 in financial grants in fiscal year 2006 to pay for trans-
portation. These grants (typically $100–200) were used for transportation
to cancer-related medical appointments (47 percent), pharmacies or other
places to pick up medications (27 percent), other medical or mental health
appointments or an emergency room (8 percent), case management/client
advocacy appointments (1 percent), and other destinations (17 percent). In
the first 8 months of fiscal year 2007, 10,102 patients received $1,621,282
to help pay for transportation.16
Weak Social Support
Also, as described above, patients’ informal social supports (family
members and friends) provide substantial emotional, informational, and
logistical support. When an individual has sufficient family members or
other informal supports, such as neighbors, friends, or church groups,
14 Behind inadequate health insurance and inability to pay for treatment-related expenses.
15 Personal communication, Katherine Sharpe, American Cancer Society, March 20, 2007.
16 Personal communication, Diane Blum, Executive Director, CancerCare, March 8, 2007.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�0 CANCER CARE FOR THE WHOLE PATIENT
they can perform or assist the patient in performing necessary tasks. When
these informal supports are lacking, the effects of psychosocial problems
are compounded.
Inattention and Lack of Support from the Health Care System
Despite the adverse effects of the psychosocial problems described
above, patients report that these problems are not well addressed as part
of their oncology care. At multiple meetings held across the nation with
the President’s Cancer Panel in 2003 and 2004, cancer survivors of all ages
reported that many health care providers “still do not consider psychosocial
support an integral component of quality cancer care and may fail to rec-
ognize, adequately treat, or refer for depression, anger and stress in cancer
survivors, family members or other caregivers” (NCI, 2004:27). Numerous
survivors and caregivers also testified that many cancer care providers did
not understand their psychosocial needs, often were unaware of available
resources, and/or did not provide referrals to those resources. Consistent
with these reports, 28 percent of respondents to the National Survey of U.S.
Households Affected by Cancer reported that they did not have a doctor
who paid attention to factors beyond their direct medical care, such as a
need for support in dealing with the illness (USA Today et al., 2006). A
number of studies have shown that physicians substantially underestimate
oncology patients’ psychosocial distress (Fallowfield et al., 2001; Keller
et al., 2004; Merckaert et al., 2005). Inattention to psychosocial problems
on the part of oncology providers has also been reported by cancer survi-
vors in focus groups (IOM, 2007) and other studies (Maly et al., 2005).
Two prior IOM reports (IOM, 2000, 2001) underscore that the vast
majority of problems in the quality of health care are not the result of
poorly motivated, uncaring, or unintelligent health care personnel, but
instead result from numerous barriers to high-quality health care in the
systems that prepare clinicians for their work and structure their work
practices. Some of these barriers occur at the level of the patient’s inter-
action with the clinician (e.g., poor communication between the patient
and his/her health care providers, multiple demands on clinicians’ time17),
17 There is little evidence on the extent to which time is/is not sufficient to address patients’
psychosocial issues. Information on both sides of the issue appears to be anecdotal. For
example, examples of oncology practices described in Chapter 5 suggest that psychosocial
problems can be significantly addressed. Others report that time is insufficient. One qualita-
tive study (Bodenheimer et al., 2004) of physicians organizations’ use of care management
processes found that in organizations with strong leadership and a quality-focused culture,
the most frequently mentioned barriers to care management—inadequate finances, payers not
rewarding quality, inadequate information technology, and resistance or overwork of physi-
cians—did not prevent the adoption of care management processes. Sites mentioning physician

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS �1
some at the level of interactions among different clinicians serving the same
patient (e.g., poor coordination of care across providers), some within the
organization in which care is delivered (e.g., inadequate work supports,
such as information technology), and some in the environment external
to the delivery of care (e.g., reimbursement arrangements that financially
penalize the provision of good-quality care) (Berwick, 2002).18 Barriers at
all four of these levels have been identified as potentially contributing to
health care providers’ failure to respond appropriately to cancer patients’
psychosocial needs and are addressed in succeeding chapters.
Clinicians may not inquire about psychosocial problems because of
inadequate education and training (including inadequate clinical practice
guidelines) in these issues (IOM and NRC, 2004), a lack of awareness of
services available to address these needs (Matthews et al., 2002), or a lack
of knowledge about how to integrate attention to psychosocial health needs
into their practices. The 2004 IOM report Meeting Psychosocial Needs of
Women with Breast Cancer called particular attention to the fact that much
of cancer care has shifted from inpatient to ambulatory care settings. A
great deal has been written about the way in which ambulatory care prac-
tices have been constructed in the past, and the fact that their structures
and work design processes need to undergo fundamental change if effective
care for chronic illnesses and support for individuals’ management of those
illnesses is to be provided (IOM, 2001; Bodenheimer et al., 2002).
Aspects of the external environment that surrounds the delivery of
health care—such as reimbursement and purchasing strategies and regula-
tory and quality oversight structures—also have been identified as mecha-
nisms that as yet do not support the delivery of psychosocial health care
(NCI, 2004; IOM, 2006; NCCN, 2006). Moreover, even when psychosocial
problems are identified and services sought, shortages and maldistribution
of health care professionals with needed expertise can be a barrier to care.
In rural and other geographically remote areas, for example, there is limited
availability of mental health care practitioners (IOM, 2006).
overwork also tended to be sites that well adopted care management processes. This study
also noted how little is known about physician overwork. Because of the weakness of evidence
in this area, the extent to which time allows practitioners to attend to psychosocial issues is
unknown, but it is reasonable to believe it may vary according to how work is designed at
each practice site.
18 Crossing the Quality Chasm: A New Health System for the 21st Century identifies four
different levels for intervening in the delivery of health care: (1) the experience of patients;
(2) the functioning of small units of care delivery (“microsystems”), such as surgical teams or
nursing units; (3) the functioning of organizations that house the microsystems; and (4) the
environment of policy, payment, regulation, accreditation, and similar external factors that
shape the context in which health care organizations deliver care.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�2 CANCER CARE FOR THE WHOLE PATIENT
The role of cancer patients and their caregivers in securing and using
appropriate psychosocial health services also may need attention.
PURPOSE, SCOPE, AND ORGANIZATION OF THIS REPORT
Recognizing the impact on cancer patients and their families of unad-
dressed psychosocial problems, the National Institutes of Health’s (NIH)
Office of Behavioral and Social Sciences Research asked the IOM to em-
panel a committee to conduct a study of the delivery of the diverse psy-
chosocial services needed by these patients and their families in community
settings. The committee was tasked with producing a report that would
• Describe how the broad array of psychosocial services needed by
cancer patients is provided and what barriers exist to accessing
such care.
• Analyze the capacity of the current mental health and cancer treat-
ment system to deliver psychosocial care, delineate the resources
needed to deliver this care nationwide, and examine available train-
ing programs for professionals providing psychosocial and mental
health services.
• Recommend ways to address these issues and an action plan for
overcoming the identified barriers to cancer patients’ receiving the
psychosocial services they need.
A more detailed description of the tasks to be carried out by the com-
mittee and the methods used for the study is provided in Appendix B. Of
note, this study builds on several prior IOM reports on cancer care, as
well as those of other authoritative bodies (see Appendix C). This report
is unique, however, in that it focuses exclusively on the delivery of psycho-
social health services, and does so across all types of cancer. In shaping its
scope of work, the committee took into particular consideration two recent
IOM reports addressing the quality of care for cancer survivors. First, the
report of the Committee on Cancer Survivorship: Improving Care and
Quality of Life entitled From Cancer Patient to Cancer Sur�i�or: Lost in
Transition (IOM and NRC, 2006) well articulated how high-quality care
(including psychosocial health care) should be delivered after patients com-
plete their cancer treatment. The IOM report Childhood Cancer Sur�i�or-
ship: Impro�ing Care and Quality of Life similarly addressed survivorship
for childhood cancer (IOM and NRC, 2003). For this reason, the commit-
tee that conducted the present study chose to focus on how psychosocial
services should be delivered during active treatment of cancer. The recom-
mendations made in this report complement those of the two prior reports
on cancer survivorship, and can be implemented for cancer survivors who

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
have completed treatment in a manner consistent with the vision articu-
lated in those reports. Second, two recent reports addressed palliative care:
Impro�ing Palliati�e Care for Cancer (IOM and NRC, 2001) and When
Children Die: Impro�ing Palliati�e and End-of-Life Care for Children and
Their Families (IOM, 2003b). For this reason, the additional considerations
involved in providing end-of-life care are not addressed in this report.
Finally, NIH directed the committee to give higher priority to in-depth
as opposed to a broader array of less detailed analyses and recommenda-
tions, and noted that, given the complexity of this study, it might not be pos-
sible to thoroughly explore diversity and health disparity issues. Especially
in the identification of successful models for the delivery of psychosocial
services, NIH asked that the committee focus on generic models that should
be promoted, with the understanding that some of these models might
need to be modified to reach underserved communities. Thus, although the
committee considered differences in the impact of cancer and the attendant
needs of those who are socially disadvantaged, issues pertaining to health
disparities (also addressed comprehensively in the recent IOM report Un-
equal Treatment: Confronting the Racial and Ethnic Disparities in Health
Care [IOM, 2003a]) are not specifically addressed in this report.
With respect to the committee’s charge to address “psychosocial ser-
vices to cancer . . . families . . .” (emphasis added), the committee notes that
the word “family” can mean many different things to different people; can
be shaped by personal beliefs and personal, ethical, and religious values; and
can have legal and political implications. The committee did not attempt
to define “family” but aimed to describe what is known about cancer’s
effects on families as the term is variously used in qualitative and quantita-
tive research. Most of this research has focused on the effects of cancer on
spouses, parents, siblings, and children of individuals with cancer. Another
large body of research focuses on “caregivers” of individuals with cancer
or other illnesses. This research documents that while most caregivers are
spouses and adult children of ill individuals, many other individuals, such as
close friends, neighbors, and individuals from places of worship, also act as
caregivers. Thus, this report incorporates research findings about “families”
and “caregivers.” When these words are used, we provide information on
how the words are used in the research reviewed. Because of the size of this
literature, and consistent with the committee’s desire to address a subset of
critical issues in depth, while family distress is addressed in this report, it
was not possible to fully examine all of the issues families/caregivers face
when a loved one is diagnosed with cancer.
The unique contributions of this report are that it
• provides an explicit definition of psychosocial health services. Al-
though the term “psychosocial services” is frequently used, the

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�� CANCER CARE FOR THE WHOLE PATIENT
committee found that it is used inconsistently and sometimes not
at all. This inconsistency has confounded the conduct and inter-
pretation of research on psychological and social problems that
seriously interfere with patients’ health care, as well as efforts to
address those problems. The definition formulated by the commit-
tee and its conceptual and empirical underpinnings are presented
in Chapter 2.
• identifies discrete services that are encompassed by the term psy-
chosocial health care, evidence that supports their effectiveness,
and issues needing additional research (discussed in Chapters 3
and 8).
• identifies a generic, conceptually and evidence-based model for en-
suring the delivery of psychosocial health services (Chapter 4) and
strategies for implementing this model in community settings with
varying levels of resources (Chapter 5). In its work, the committee
interpreted “community care” to mean care delivered in settings
other than in-patient care sites.19
• identifies the support needed from policy makers in the purchasing,
oversight, and regulatory arenas to facilitate routine attention to
psychosocial health needs in cancer care and the delivery of psy-
chosocial health services when needed (Chapter 6).
• identifies the knowledge, skills, and abilities needed by the work-
force to implement the model for psychosocial health care, and
examines how the education and training of the workforce can be
improved to provide them (Chapter 7).
• identifies a research agenda to help improve psychosocial health
care (Chapter 8).
Together, the recommendations presented in this report and proposed
means of evaluating their successful implementation (also in Chapter 8)
constitute an action plan for overcoming the identified barriers to cancer
patients’ receipt of the psychosocial health services they need in community
settings.
19 Individuals receive care for their cancer in a variety of settings, including inpatient facili-
ties, outpatient departments attached to medical centers and hospitals, freestanding ambu-
latory oncology practices, and ambulatory practices of primary care physicians and other
specialists. In order to address the care of as many cancer patients as possible, and recognizing
that the processes and intensity of inpatient care and the needs of acutely ill inpatients differ
from those associated with ambulatory care, the committee interpreted “community care” to
refer to all sites of cancer care except inpatient settings.

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THE PSYCHOSOCIAL NEEDS OF CANCER PATIENTS ��
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�1
2
Consequences of Unmet
Psychosocial Needs
CHAPTER SUMMARY
Psychosocial problems can be created or exacerbated by cancer and
its treatment, as well as predate the illness. The failure to address these
problems results in needless patient and family suffering, obstructs qual-
ity health care, and can potentially affect the course of the disease. Social
isolation and other social factors, stress, and untreated mental health
problems contribute to emotional distress and the inability to fulfill �alued
social roles, and interfere with patients’ ability to adhere to their treatment
regimens and act in ways that promote their o�erall health. Additionally,
these problems can bring about changes in the functioning of the body’s
endocrine, immune, and other organ systems, which in turn could ha�e
implications for the course of cancer and other conditions. Families and
the larger community also can be affected when psychosocial problems
are not addressed.
Although it is clear that psychosocial problems influence health, e�i-
dence is still emerging on just how they do so. Moreo�er, some such prob-
lems (such as po�erty) ob�iously cannot be resol�ed by the health care
system. Ne�ertheless, e�idence clearly supports the need for attention to
psychosocial problems as an integral part of good-quality health care.
Psychosocial health ser�ices can enable patients with cancer, their families,
and health care pro�iders to optimize biomedical health care, manage the
psychological/beha�ioral and social aspects of the disease, and thereby
promote better health.
A significant body of research shows that the psychological and social
stressors reviewed in Chapter 1—such as depression and other mental

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�2 CANCER CARE FOR THE WHOLE PATIENT
health problems, limited financial and other material resources, and inad-
equate social support—are associated with increased morbidity and mor-
tality and decreased functional status. These effects have been documented
both for health generally (House et al., 1988; Kiecolt-Glaser et al., 2002)
and for a variety of individual health conditions and illnesses, including
heart disease (Hemingway and Marmot, 1999), HIV/AIDS (Leserman et al.,
2002), pregnancy (Wills and Fegan, 2001; ACOG Committee on Health
Care for Underserved Women, 2006), and cancer (Kroenke et al., 2006;
Antoni and Lutgendorf, 2007).
Psychosocial stressors are theorized to affect health adversely in a num-
ber of ways. First, emotional distress and mental illness can themselves be
the source of suffering, diminished health, and poorer functioning through
their symptoms and their adverse effects on role performance. Second, psy-
chosocial problems can adversely affect patients’ abilities to cope with and
manage their illness by limiting their ability to access and receive appro-
priate health care resources; adhere to prescribed treatment regimens; and
engage in behaviors necessary to manage illness and promote health, such
as maintaining a healthy diet, exercising, and monitoring symptoms and ad-
verse responses to treatment (Yarcheski et al., 2004; Kroenke et al., 2006).
In multiple focus groups and interviews, patients with chronic illnesses such
as diabetes, arthritis, heart disease, chronic obstructive lung disease, depres-
sion, and asthma have identified lack of family support, financial problems,
lack of health insurance, problems with mobility, depression and other
negative emotions, and stress as obstacles to dealing with their illness and
health (Wdowik et al., 1997; Riegel and Carlson, 2002; Bayliss et al., 2003;
Jerant et al., 2005). Moreover, a growing body of evidence is illuminating
how the stress resulting from psychosocial problems can induce adverse
effects within the body’s cardiovascular, immune, and endocrine systems
(Segerstrom and Miller, 2004; Yarcheski et al., 2004; Uchino, 2006; Miller
et al., 2007). Although evidence of adverse health outcomes from these ef-
fects is strongest for cardiovascular disease, emerging evidence from animal
models and some human data suggest pathways through which these effects
can influence the course of other illnesses (Antoni and Lutgendorf, 2007).
A wide range of psychosocial variables may affect the course of illness.
For example, several studies have found that individual psychological traits
such as optimism, mastery, and self-esteem (sometimes termed psychosocial
resources) protect against stress (Segerstrom and Miller, 2004). This chapter
details the health effects of three psychosocial factors—social support, fi-
nancial and other material resources, and emotional and mental status—for
which there is strong evidence on health effects, for which there are screen-
ing and assessment tools that can be used to detect problems, and for which
psychosocial health services (described in Chapter 3) exist to address identi-
fied problems. Also presented is evidence of how problems in these areas

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
affect the way the body works and the course of certain diseases. Together,
these effects reduce an individual’s ability to engage in valued roles, and
also have negative impacts on both families and the community.
PSYCHOSOCIAL STRESSORS AND THEIR EFFECTS ON PATIENTS
Inadequate Social Support
Humans are social animals, and inadequate social contact and sup-
port can have profound adverse consequences. It is not surprising, then,
that social support plays a central role in helping cancer patients and their
families manage the illness. Although there is currently no single definition
of “social support” (King et al., 2006; Uchino, 2006), research reveals that
it has multiple dimensions. The web of relationships that exist between a
person and his or her family, friends, and other community ties and the
structural and functional characteristics of that web are generally referred
to as the person’s “social network” (Berkman et al., 2000). The number,
breadth, and depth of these relationships together make up one’s degree
of “social integration.” Beneficial1 social networks provide different types
of support to individuals under stress, including emotional, informational,
and instrumental support. Emotional support involves “the verbal and non-
verbal communication of caring and concern,” including “listening, ‘being
there,’ empathizing, reassuring, and comforting” (Helgeson and Cohen,
1996:135); informational support increases knowledge and provides guid-
ance or advice; and instrumental support involves the provision of material
or logistical assistance, such as transportation, money, or assistance with
personal care or household chores (Cohen, 2004). Each type of support
can improve health care outcomes. For example, emotional support may
help people cope more effectively with the obstacles they encounter and
with their own emotional response to the challenges of illness. Insofar as
knowledge may be gained from others about treatment or other aspects of
care, informational support can increase the effectiveness of health care
utilization. And instrumental support may help individuals act on this
knowledge.
Morbidity and Mortality Effects
Epidemiological studies across a variety of illnesses have found that
when individuals have low levels of social support, they experience worse
outcomes, including higher mortality rates (IOM, 2001). There is strong
1 Social networks can also have adverse effects, such as when they support illegal or other
undesirable behaviors and attitudes.

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evidence that the perception of the availability of social support protects
individuals under stress from psychological distress, anxiety, and depres-
sion (Wills and Fegan, 2001; Cohen, 2004), in part by buffering them from
the effects of stress (House et al., 1988; IOM, 2001). Consistent with this
evidence, greater social integration has been associated with reduced mor-
tality in multiple prospective community-based studies (Wills and Fegan,
2001). Conversely, well-designed studies have shown social isolation to be a
potent risk factor for mortality across all causes of death (including cancer),
as well as death due to specific conditions such as heart disease and stroke
(Berkman and Glass, 2000). Indeed, the relative risk of death associated
with social isolation is comparable to that associated with high cholesterol,
mild hypertension, and smoking (House et al., 1988; IOM, 2001). The
mechanisms by which these effects occur are not fully known, but there
is evidence that social relationships that are stressful, weak, or absent can
lead to decreased ability to cope with illness, negative emotions such as
depression or anxiety, and immune and endocrine system dysfunction (see
the discussion below) (Uchino et al., 1996; Kielcolt-Glaser et al., 2002).
Effects of social support on health outcomes have been found specifi-
cally among individuals with cancer (Patenaude and Kupst, 2005; Weihs
et al., 2005). A recent study following 2,800 women with breast cancer for
a median of 6 years, for example, found that women who were socially
isolated before their diagnosis had a 66 percent higher risk of dying from
all causes during the observation period compared with women who were
socially integrated. They were also twice as likely to die from breast cancer
during this period2 (Kroenke et al., 2006).
Weakened Coping Abilities and Increased Mental Illness
Psychological adjustment to an illness involves “adaptation to disease
without continued elevations of psychological distress (e.g., anxiety, depres-
sion) and loss of role function (i.e., social, sexual, vocational)” (Helgeson
and Cohen, 1996:136). Positive emotional support is linked to good psy-
chological adjustment to chronic illnesses generally and cancer specifically,
and to fewer symptoms of depression and anxiety (Helgeson and Cohen,
1996; Wills and Fegan, 2001; Maly et al., 2005). Conversely, unsupport-
ive social interactions are associated with greater psychological distress
(Norton et al., 2005), decreased social role functioning (Figueiredo et al.,
2004), and higher rates of post-traumatic stress disorder (PTSD) and post-
traumatic stress symptoms (PTSS) in children with cancer (Bruce, 2006).
2 The analysis of data adjusted for stage of cancer at diagnosis, age, and other variables that
might also affect survival.

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
Diminished Ability to Manage Illness
The outcomes noted above are problematic in and of themselves, but
they may also decrease individuals’ ability to take the actions necessary to
adhere to treatment, change health behaviors, and otherwise manage their
illness. Individuals with greater social support are more likely to engage in
health-promoting behaviors and exhibit healthy physiological functioning
(IOM, 2001). In a meta-analysis of studies of predictors of positive health
practices, loneliness and degree of perceived social support were found to
have the largest effects (in the expected direction) on the performance of
healthy behaviors (Yarcheski et al., 2004).
Insufficient Financial and Other Material Resources
Multiple studies have shown that low income is a strong risk factor
for disability, illness, and death. Inadequate income limits one’s ability
to avoid stresses that can accompany everyday life and to purchase food,
medications, transportation, and health care supplies necessary for health
and health care (Kelly et al., 2006). To take just one example, lack of
transportation to get to medical appointments, the pharmacy, the grocery
store, health education classes, peer support meetings, and other out-of-
home health resources can hinder health monitoring, illness management,
and health promotion.
As discussed in Chapter 1, in 2003 nearly one in five people in the
United States with chronic conditions3 lived in families that had problems
paying medical bills (Tu, 2004); 63 percent of these individuals also re-
ported problems paying for housing, transportation, and food (May and
Cunningham, 2004). Among the privately insured with problems paying
medical bills, 10 percent went without needed medical care, 30 percent de-
layed care, and 43 percent failed to fill needed prescriptions because of cost
concerns (Tu, 2004). Overall, 68 percent of families with problems paying
medical bills had problems paying for other necessities, such as food and
shelter (May and Cunningham, 2004). Such families may trade off medical
care so they can fulfill basic needs.
The 2006 National Survey of U.S. Households Affected by Cancer
similarly found that 8 percent of families having a household member with
cancer delayed or did not receive care because of the cost of care. Of those
without health insurance, more than one in four delayed or decided not to
get treatment because of its cost, and 41 percent were unable to pay for
basic necessities (USA Today et al., 2006). A longitudinal study of a cohort
3 Asthma, arthritis, diabetes, chronic obstructive pulmonary disease, heart disease, hyperten-
sion, cancer, benign prostate enlargement, abnormal uterine bleeding, and depression.

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�� CANCER CARE FOR THE WHOLE PATIENT
of 860 men being treated for prostate cancer found that even after control-
ling for state of disease at the start of treatment, type of treatment, and
other possible influential variables, men without health insurance achieved
lower physical functioning, had more role limitations, and experienced
poorer emotional well-being over time than men with health insurance.
The researchers concluded that “patients undergoing aggressive treatment,
which can itself have deleterious effects on quality of life, are exposed to
further hardships when they do not have comprehensive health insurance
upon which to support their care” (Penson et al., 2001:357). The adverse
effects of no or inadequate insurance contribute to poorer health prior to
the receipt of health care; undermine the effectiveness of care by increasing
the chances of delayed or no treatment and the inability to obtain needed
prescription medications; and contribute to worse outcomes of medical
treatment for people with cancer and other diseases (IOM, 2002; Tu, 2004;
IOM and NRC, 2006).
Emotional Distress and Mental Illness�
As discussed in Chapter 1, psychological distress is common among
individuals with cancer. However, mental health problems and other types
of psychological distress (which sometimes predate illness) (Hegel et al.,
2006) are not unique to patients with cancer. People with chronic condi-
tions such as diabetes, heart disease, HIV-related illnesses, and neurologi-
cal disorders also are found to have high rates of depression, adjustment
disorders, severe anxiety, PTSS or PTSD, and subclinical emotional distress
(Katon, 2003). In a British sample of older adults living in the community,
the development of serious physical illness in the respondent was frequently
associated with the development of new-onset major depression (Murphy,
1982). A more recent longitudinal study in Canada found an increased
risk of developing major depression to be associated with virtually any
long-term medical condition (Patten, 2001). Most recently, an 8-year study
followed a nationally representative sample of more than 8,000 U.S. adults
aged 51–61 living in the community (and with no symptoms of depression
at the start of the study) to examine the extent to which they developed
symptoms of depression after a new diagnosis of several illnesses—cancer
(excluding minor skin cancers), diabetes, hypertension, heart disease, ar-
thritis, chronic lung disease (excluding asthma), or stroke. Those receiving
4 Portions of this section are from a paper commissioned by the committee entitled “Effects
of Distressed Psychological States on Adherence and Health Behavior Change: Cognitive,
Motivational, and Social Factors” by M. Robin DiMatteo, Kelly B. Haskard, and Summer
L. Williams, all of the University of California, Riverside. This paper is available from the
Institute of Medicine.

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
a diagnosis of cancer were at the highest risk of developing symptoms of
depression within 2 years (13 percent incidence), with more than triple the
risk of all others combined (Polsky et al., 2005). (Those with a diagnosis of
chronic lung disease, heart disease, and stroke also had higher-than-average
rates of depressive symptoms.)
Depressed or anxious individuals with a variety of comorbid gen-
eral medical illnesses (including cancer) report lower social functioning,
more disability, and greater overall functional impairment than patients
without depression or anxiety (Katon, 2003). Distressed emotional states
also often generate additional somatic problems, such as sleep difficulties,
fatigue, and pain (Spitzer et al., 1995; APA, 2000), which can confound
the diagnosis and treatment of physical symptoms. Among patients with a
variety of chronic medical conditions other than cancer, those with depres-
sive and anxiety disorders have significantly more medically unexplained
symptoms than those without depression and anxiety, even when severity
of illness is controlled for. Patients with depressive and anxiety disorders
also have greater difficulty learning to live with chronic symptoms such
as pain or fatigue; data suggest that depression and anxiety are associated
with heightened awareness of such physical symptoms. Multiple studies of
patients with major depression have also found higher-than-normal rates
of unhealthy behaviors such as smoking, sedentary lifestyle, and overeat-
ing (Katon, 2003). Depression is associated as well with poor adherence to
prescribed treatment regimens (DiMatteo et al., 2000).
Impaired Adherence to Medical Regimens and Beha�ior Changes
Designed to Impro�e Health
While serious health events can trigger health-damaging behaviors—
such as use of substances and consumption of unhealthful foods—as
individuals cope with the distress associated with the illness, they can
also motivate people to take up a number of health-promoting behaviors
(McBride et al., 2003; Demark-Wahnefried et al., 2005). One study, for
example, found that 6 months after surviving a heart attack, 17 percent
of patients were engaged in four health-promoting behaviors (refraining
from smoking, weight reduction, sufficient physical activity, and consump-
tion of a low-fat diet), compared with just 3 percent of patients at baseline
(Salamonson et al., 2007). Another study found that following HIV diag-
nosis, 43 percent of individuals reported increased physical activity and
59 percent improved diet (Collins et al., 2001). In general, research indi-
cates that following a cancer diagnosis, many patients engage in behaviors
such as stress management, quitting smoking, aerobic exercise, and major
dietary change (Blanchard et al., 2003; Ornish et al., 2005; Andrykowski
et al., 2006; Rabin and Pinto, 2006; Humpel et al., 2007). One study found

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�� CANCER CARE FOR THE WHOLE PATIENT
that following a cancer diagnosis, as many as half of those who smoked quit
(Gritz et al., 2006). The concept of “teachable moments” has been used to
explain how, after experiencing health events such as serious illness, people
are motivated to take up health-promoting behaviors (McBride et al., 2003;
Demark-Wahnefried et al., 2005).
Over the course of many serious acute and chronic conditions, however,
patients’ adherence to health professionals’ recommendations for improved
health can be quite low. And despite motivation, changes in actual health
behaviors do not always come about or persist. For example, dozens of
studies have found more than 30 percent nonadherence to dialysis, dietary
and fluid restrictions, and transplant management in patients with end-stage
renal disease, diabetes, and lung disease. In patients with cardiovascular
disease, nonadherence to lifestyle changes, cardiac rehabilitation, and medi-
cation regimens is almost 25 percent. In patients with HIV, nonadherence
to highly active antiretroviral treatment regimens and behavior change is
11.7 percent (DiMatteo, 2004). Similar rates of nonadherence have been
observed in cancer patients despite the importance to survival and bet-
ter health care outcomes of adhering to a treatment regimen. More than
20 percent of cancer patients have been found to be nonadherent to a
variety of treatments, including oral ambulatory chemotherapy, radiation
treatment, and adjuvant therapy with tamoxifen (Partridge et al., 2003;
DiMatteo, 2004). For adjuvant tamoxifen, for example, adherence can be
as low as 50 percent after 4 years of treatment (Partridge et al., 2003). One
study of the natural progression of exercise participation after a diagnosis
of breast cancer found that women did not significantly increase their lev-
els of exercise over time and were in fact exercising below recommended
levels despite their expressed intentions otherwise (Pinto et al., 2002). As
discussed below, depression and other adverse psychological states can
thwart adherence to treatment regimens and behavior change in a number
of ways, for example, by impairing cognition, weakening motivation, and
decreasing coping abilities.
Impaired Cognition
To achieve healthy lifestyles and manage chronic illness effectively,
patients must first understand what they need to do to care for them-
selves. The necessary information may come from many sources, including
the media, family members, and health professionals, and may include,
for example, reasons for needed chemotherapy, the exact ways in which
medication should be administered, and the importance of sleep and a good
diet. Distressed psychological states can seriously challenge the cognitive
functioning and information processing required to understand treatments
and organize health behaviors. Stress, anxiety, anger, and depression can

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
impair the ability to learn and maintain new behaviors (Spiegel, 1997) or
to undertake complex tasks that require planning and behavioral execution
(Wells and Burnam, 1991; Olfson et al., 1997).
For example, research on kidney transplant recipients’ adherence to im-
munosuppressive medication has found that patients with poor adherence
report higher levels of psychological distress relative to patients with good
adherence (Achille et al., 2006). Patients undergoing dialysis treatment for
end-stage renal disease have also been found to experience greater cognitive
impairment and dysfunction due to depressive mood (Tyrrell et al., 2005).
Disturbance of mood and motivation in HIV-positive individuals has been
associated with decrements in several cognitive factors, such as neurocogni-
tive performance, verbal memory, executive functioning, and motor speed
(Castellon et al., 2006). Among patients with advanced cancer, depression
and anxiety similarly have been found to contribute to cognitive impair-
ments (Mystakidou et al., 2005). Even after controlling for the effects of
pain and illness severity, anxiety and depression among patients with cancer
have been independently associated with decreased cognitive functioning
(Smith et al., 2003).
Moreover, when patients are distraught about the course of their ill-
ness, they may be more likely to forget health professionals’ recommenda-
tions and less likely to ask questions about their care and participate in
medical visits (Robinson and Roter, 1999; DiMatteo et al., 2000; Katon
et al., 2004; Sherbourne et al., 2004). Lower levels of patient participation
are associated with poorer health behaviors (Martin et al., 2001).
Weakened Moti�ation
Distressed psychological states can limit patients’ concern about the
importance of their health behaviors and contribute to their belief that the
benefits of adherence are not worth the trouble (Fink et al., 2004). Dis-
tressed psychological states can also lead to diminished self-perceptions and
limitations in personal self-efficacy,5 which in turn negatively affect health
behaviors and adherence. Pessimism about the future and about oneself
can forestall the adoption of new health practices and interfere with health
behaviors and adherence (Peterman and Cella, 1998; DiMatteo et al., 2000;
Taylor et al., 2004). Limitations in personal self-efficacy that derive from
both anxiety and depression can interfere with the behavioral commitment
essential to the adoption and maintenance of new health practices. Dis-
tressed psychological states can also amplify somatic symptoms, causing
5 As discussed in Chapter 1, self-efficacy is defined as the belief that one is capable of carrying
out a course of action to reach a desired goal (Bandura, 1997).

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�0 CANCER CARE FOR THE WHOLE PATIENT
additional functional disability and further reducing patients’ motivation
to change behavior.
Less Effecti�e Coping
Self-efficacy and emotional resilience contribute to greater engagement
in health-promoting behaviors, including adherence to treatment regimens.
Conversely, these behaviors can be undermined by ineffective coping with
psychological distress. Optimism and positive coping also have been ex-
plored as mechanisms through which ill individuals can become more
emotionally resilient and better able to cope with and manage the course of
their disease. Coping (which involves seeking of social support, positive re-
framing, information seeking, problem solving, and emotional expression)
can bolster one’s adjustment to chronic illness (Holahan et al., 1997), and
improving patients’ coping strategies can be effective in reducing symptoms
of psychological distress that hinder health behaviors and the management
of illness (Barton et al., 2003). For patients with cancer, optimism also
predicts improved quality of life and functional status and the effective
management of pain (Astin and Forys, 2004).
Finding meaning in the illness experience is another coping mechanism
that can improve a patient’s psychological adjustment (Folkman and Greer,
2000), contributing to a greater sense of control, improved psychological
adjustment, and more positive focus (Fife, 1995). As many as 83 percent
of patients with breast cancer come to realize at least one benefit follow-
ing their diagnosis (Sears et al., 2003); such a realization involves positive
reappraisal of their situation and results in better coping, mood, and health
status. Research on patients with tuberculosis in South Africa found a sig-
nificant relationship between assessment of meaning in life and adherence
to treatment for the disease (Corless et al., 2006). Finding benefit also is
linked to patients’ adherence to antiretroviral therapy for HIV (Stanton
et al., 2001; Luszczynska et al., 2006).
Conversely, coping mechanisms that are less adaptive can help in deal-
ing with the immediate emotional distress associated with illness but create
longer-term problems. Avoidant coping, which involves denial, emotional
instability, avoidant thinking (avoiding thoughts about the reality of the ill-
ness), and immature defenses, is associated with less engagement in healthy
behaviors (e.g., healthy diet, exercise, adherence to treatment), as well as
the adoption of unhealthful behaviors (e.g., smoking, drinking alcohol to
excess, abusing psychotropic medications) in an effort to cope with emo-
tional distress (Stanton et al., 2007). Avoidant thinking about the illness
is considered “harmful coping” because problems are not faced and solu-
tions are not found, contributing to unhealthy behaviors and nonadherence
(Carver et al., 1993).

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS �1
ALTERATIONS IN BODY FUNCTIONING DUE TO STRESS�
Psychological stress arises from the interaction between the individual
and the environment. It is said to occur when environmental demands
(stressors) exceed the individual’s capacity to deal with those demands
(Lazarus and Folkman, 1984; Cohen et al., 1995). Stress is thought to exert
its pathological effects on the body and increase the risk of disease in part
by encouraging maladaptive behaviors as described above. People often
cope with the negative emotions elicited by stress through behaviors that
bring short-term relief but carry long-term risk. Under stress, people gener-
ally smoke more, drink more alcohol, eat foods with a higher fat and sugar
content, and exercise less (Conway et al., 1981; Cohen and Williamson,
1988; Anderson et al., 1994). They also tend to have less and poorer-quality
sleep (Akerstedt, 2006).
In addition, stress is thought to influence the pathogenesis or course
of physical disease more directly by causing negative affective states, such
as anxiety and depression, which in turn exert direct effects on biologi-
cal processes that stimulate and dysregulate certain physiological systems
in the body. The immune, cardiovascular, and neuro-endocrine systems
are well-known respondents to stress (IOM, 2001). Long-term stressful
circumstances that reduce perceptions of control and increase feelings of
helplessness, hopelessness, and anxiety damage health and can lead to
premature death, in part because of the immune, cardiac, and other physi-
ological responses they produce (WHO, 2003). Individuals are even more
vulnerable to the adverse physiological effects of stress when they are
exacerbated by other psychosocial factors (e.g., a weak social network) or
the individual has inadequate psychosocial assets to buffer the effects of
exposure to stress.
Links Between Stress and Disease
There is strong evidence that chronic stress influences the development
and/or progression of certain illnesses, including major depression, heart
disease, HIV-related illnesses, and (to a lesser extent) cancer.
Depression
Substantial research links stressful life events to both diagnosed depres-
sion and depressive symptoms (Monroe and Simons, 1991; Kessler, 1997;
Mazure, 1998; Hammen, 2005). One study found that during the 3–6
6 Portions of this section are from a paper commissioned by the committee entitled “Stress
and Disease,” authored by Sheldon Cohen and Denise Janicki-Deverts, both of Carnegie Mel-
lon University. This paper is available from the Institute of Medicine.

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�2 CANCER CARE FOR THE WHOLE PATIENT
months preceding the onset of their depression, 50–80 percent of depressed
persons had experienced a major life event, compared with only 20–30
percent of nondepressed persons evaluated during the same time period
(Monroe and Simons, 1991). Approximately 20–25 percent of people who
experience major stressful events develop depression (van Praag et al.,
2004). Moreover, there is consistent evidence that severe events are more
strongly associated with the onset of depression than are nonsevere events,
and that there may be a dose-response relationship between the severity
of major life events and the likelihood of depression onset (Monroe and
Simons, 1991; Kessler, 1997). In general, major life events that are undesir-
able and uncontrollable, such as bereavement or job loss, are the most likely
to be associated with depression (Mazure, 1998). Life-threatening illnesses
have also been associated with an increased risk of depression (Dew, 1998).
The greatest prevalence of depression in chronically ill patients is reported
among those with greater pain, higher levels of physical disability, and more
severe illness (Krishnan et al., 2002).
Cardio�ascular Disease
Prospective research conducted among initially healthy populations
provides considerable support for a link between stress and incident cardio-
vascular disease (CVD) (Rozanski et al., 1999; Krantz and McCeney, 2002;
Belkic et al., 2004). Research examining the influence of chronic psychoso-
cial stress on the risk of recurrent events among persons with preexisting
CVD is not as extensive. However, findings from this literature further
suggest that exposure to chronic or ongoing psychosocial stress may play a
role in worsening disease prognosis among persons with a known history
of CVD. Perceived life stress (Ruberman et al., 1984), excessive demands
at work (Hoffmann et al., 1995), marital distress (Orth-Gomer et al., 2000;
Coyne et al., 2001), and social isolation (Mookadam and Arthur, 2004)
each have been related to poor CVD outcomes (i.e., recurrent events and/or
mortality) among persons with preexisting CVD. In addition, short-term
stressful events and episodes of anger have been shown to precipitate clini-
cal manifestations of coronary artery disease such as myocardial infarction
(Rozanski et al., 1999; Krantz and McCeney, 2002). Reviews of prospec-
tive studies generally conclude that depression is an important risk factor
both for onset of CVD among initially healthy persons (Rugulies, 2002;
Wulsin and Singal, 2003; Frasure-Smith and Lesperance, 2005) and for
worsening prognosis among CVD patients (Barth et al., 2004; van Melle
et al., 2004; Bush et al., 2005). Several studies have also shown that social
support is associated with lower resting and ambulatory blood pressures
(Uchino et al., 1999; Ong and Allaire, 2005)—a factor reducing the risk of

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
the development of heart disease and lower atherosclerosis (Uchino, 2006)
and the progression of cardiac disease once diagnosed.
HIV/AIDS
The typical clinical course of HIV infection is a gradual progression
from an initial asymptomatic phase, to a symptomatic phase, to the onset of
AIDS (CDC, 1992). Individuals differ with respect to the rate at which they
progress through these phases. Some remain asymptomatic for extended
periods of time and respond well to medical treatment, whereas others
progress rapidly to the onset of AIDS, and suffer numerous complications
and opportunistic infections (Kopnisky et al., 2004). It has been suggested
that psychosocial factors, including stress and depression, may account for
some of this variability (Kiecolt-Glaser and Glaser, 1988; Kopnisky et al.,
2004; Pereira and Penedo, 2005).
Although the evidence published before 2000 for the influence of stress
on progression through the clinical phases of HIV infection was inconsis-
tent (Cohen and Herbert, 1996; Nott and Vedhara, 1999), several studies
did report associations between stress due to negative life events and more
rapid HIV progression (Goodkin et al., 1992; Kemeny and Dean, 1995;
Evans et al., 1997). Studies published since 2000 have been more consis-
tently supportive of such a link (Pereira and Penedo, 2005).7 Evidence also
suggests that an accumulation of negative life events over several years of
follow-up predicts more rapid progression to AIDS (Leserman et al., 2002).
Moreover, stress has been found to influence the course of specific condi-
tions (especially virus-initiated illnesses), to which persons with HIV are
especially susceptible (Pereira et al., 2003a,b).
Cancer
The literature is less clear with regard to the effects of stressful life
events on the incidence of cancer. Studies of the effects of stress on the
7 One difference between earlier and later studies that may explain the variable findings is
that in the most recent studies (started in 1995 or later), some patients have been treated with
highly active antiretroviral therapy, a regimen that has substantially reduced AIDS-related
deaths among infected persons. Hence the association between stress and HIV progression
may be attributable to stress interfering with adherence to this complex medication regi-
men. Variable findings also may be due to differences in how stress was measured (Cole and
Kemeny, 2001). Studies published during the 1990s frequently used aggregate measures of the
occurrence of negative life events; later studies tended to incorporate subjective ratings of the
stressfulness of events and focus on specific events with highly personal consequences, such as
bereavement and the threat of severe illness (Cohen and Janicki-Deverts, 2007).

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�� CANCER CARE FOR THE WHOLE PATIENT
onset of cancer are inconsistent; results range from no association to a
strong association (Fox, 1989; Petticrew et al., 1999; Turner-Cobb et al.,
2001; Duijts et al., 2003; Heffner et al., 2003; Walker et al., 2005). These
conflicting findings are due in no small part to methodological limitations
of this work. Some of these limitations have to do with the measurement of
biological processes; newer studies are finding more linkages between stress
and biological processes that may serve as mechanisms in tumor develop-
ment and growth. Other limitations derive from problems in the measure-
ment of exposure to stress and of disease outcomes. Because the incidence
literature is based primarily on measures of stressful life events, associations
could be obscured by the fact that those who can cope effectively with such
events are less subject to disease (Eysenck, 1988; Giese-Davis and Spiegel,
2003). On the other hand, most cancers develop over many years and are
diagnosed only after developing for 2–30 years, arguing against an asso-
ciation between recent stressful events and the onset of cancer (National
Cancer Institute, 2007).
It is generally accepted that stress is more likely to influence the pro-
gression and recurrence of cancer than the initial onset of the disease
(Thaker et al., 2007). This assumption is based largely on evidence that
stress and depression can influence immunocompetence, and that the im-
mune system plays an important role in tumor surveillance and growth
(Cohen and Rabin, 1988; Anderson et al., 1994; Turner-Cobb et al., 2001).
Yet even research in these areas has produced inconsistent results (Cohen
and Herbert, 1996; Giese-Davis and Spiegel, 2003; Walker et al., 2005).
The lack of impressive data on psychological stress and depression as
risks for the onset, progression, or recurrence of cancer is at least partly
attributable to the practical difficulties of designing and implementing ad-
equate studies. For example, in the interest of maximizing power, studies
frequently combine multiple types of cancers. Such an approach makes it
difficult to interpret results, as it is likely that stress may influence the de-
velopment of some types of tumors (e.g., those caused by viruses or subject
to endocrine regulation) but not others. Despite the less clear evidence to
date on the effect of stress on cancer, growing knowledge about the effects
of stress on body function—in particular on the functioning of the immune
system—adds to suspicions about the potential adverse effects of stress on
the progression of some types of cancer.
Effects of Stress on Organ Systems
Although epidemiologic studies conducted to date are inconclusive
about the effects of stress on the development and progression of cancer,
evidence emerging from the science of psychoneuroimmunology—the study

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
of the interactions among behavior, the brain, and the body’s immune
system—shows that psychological and social stressors can interfere with
the working of the body’s organ systems, in particular the neuro-endocrine
and immune systems.8 These effects are thought to mediate the influence
of psychosocial stressors on health in general and could potentially play a
role in the progression of cancer.
The body’s sympathetic-adrenal medullary (SAM) system and the hy-
pothalamic-pituitary-adrenocortical (HPA) axis are two neuro-endocrine
systems that are highly responsive to psychological stress. The SAM system
reacts to stress in part by increasing the production of certain hormones
called catecholamines. In HPA stimulation, the pituitary gland secretes a
hormone that activates the adrenal gland to secrete additional hormones
called glucocorticoids (primarily cortisol in humans). Although the release
of these hormones is a healthy response to an environmental stressor, their
excessive or prolonged production under ongoing stressful conditions is
associated with impaired functioning or dysregulation of various organs
and organ systems (McEwen, 1998; Antoni and Lutgendorf, 2007). These
effects can have a cascading effect on the immune system (Kielcolt-Glaser
et al., 2002).
Immune system processes play a central role in protecting against infec-
tious diseases, autoimmune diseases, coronary artery disease, and at least
some cancers by identifying organisms and cells that are atypical, attacking
them, and preventing their replication. Under chronic stress, however, key
immune system functioning can be disrupted. Chronic stress, depression,
inadequate social support, and other psychosocial stressors can create dis-
equilibrium in immune system functioning by either overstimulating some
immune system functions or suppressing others (Miller et al., 2007). For
example, the unbalanced production of certain proteins (cytokines) that
help regulate the body’s immune system can create a pathological state of
inflammation that has been linked to certain cancers, as well as a number of
chronic conditions, such as CVD, arthritis, type 2 diabetes, and frailty and
functional decline in older adults (Kielcolt-Glaser et al., 2002; Antoni et al.,
2006). Prolonged exposure to cortisol and catecholamines under chronic
stress also can adversely affect cellular replication and several regulators of
cell growth. Some of these observed effects on cancer cells—such as accel-
erating tumor growth, enhancing tumor metabolism, assisting tumor cells
in migrating and adhering to a distant site, increasing blood vessel growth
in tumors, and helping tumors evade the immune system’s natural killer
8 Many of these studies are conducted using animals. While not perfectly matching the physi-
ology and environmental features of humans, such studies greatly inform our understanding
of the biological effects of psychosocial stress.

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�� CANCER CARE FOR THE WHOLE PATIENT
(NK) cells9—could help cancer to progress (Antoni and Lutgendorf, 2007;
Thaker et al., 2007).
Multiple studies have shown that positive social support, in particular
the provision of emotional support, is related to better immune system func-
tioning and resistance to disease (Uchino et al., 1996; IOM, 2001; Uchino,
2006). In women with ovarian cancer, higher levels of social support pre-
dicted higher levels of NK cell activity, while patients with greater distress
had more impaired NK cells (Lutgendorf et al., 2005).10 Findings from two
randomized controlled trials of psychosocial interventions in breast cancer
patients also found improvements in immune system functioning using a
variety of measures of immune system competency (Andersen et al., 2004;
McGregor et al., 2004).
Studies with animals also have found increased stress to be associ-
ated with higher levels of stress hormones (catecholamines) and increased
tumor mass and metastases (Thaker et al., 2007). For example, mice with
mammary tumors randomly assigned to more stressful housing conditions
showed greater tumor growth as well as shorter survival following chemo-
therapy (Kerr et al., 1997; Strange et al., 2000). Higher levels of certain
pro-inflammatory cytokines (interleukin) also have been found in people
living in high-stress situations, for example, female caregivers of relatives
with Alzheimer’s disease compared with community controls (Lutgendorf
et al., 1999).
Although more research is needed to understand the extent to which,
and how, these stress-induced physiological changes can influence cancer, it
is clear that stress can induce pathology in several aspects of body function
that affect health. Research findings also indicate that stress, mood, cop-
ing, social support, and psychosocial interventions affect neuro-endocrine
and immune system activity and can influence the underlying cellular and
molecular processes that facilitate the progression of cancer. Findings also
suggest the plausibility of improving the health status of cancer patients
by attending to their psychosocial distress (McEwen, 1998; Antoni and
Lutgendorf, 2007; Thaker et al., 2007). For all these reasons, psychosocial
stressors should not be ignored in the delivery of high-quality health care
for people living with cancer.
9 A type of white blood cell that attacks harmful body invaders, such as tumors or virus-
infected cells.
10 In this study, social support and distress appeared to operate independently.

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
ADVERSE EFFECTS ON FAMILIES AND
THE LARGER COMMUNITY
Failure to attend to patients’ psychosocial needs can have ripple ef-
fects throughout the family, and may also affect the larger community.
Some of these effects can rebound and create additional psychosocial
problems for the patient.
Adverse Effects on Families
As described in Chapter 1, family members of patients with cancer
experience higher-than-normal stress for multiple reasons, including fear of
losing their loved one, concern about the suffering of their family member,
and the additional demands of providing emotional and logistical sup-
port and hands-on care during times of acute illness (Hodges et al., 2005;
Kotkamp-Mothes et al., 2005). Further, when loved ones experience acute
or long-term inability to care for themselves or carry out their familial roles,
family members often must assume these roles.
Providing this emotional, logistical, and hands-on care and assuming
roles previously carried out by the patient require considerable adaptation
(and readaptation as the course of the disease changes) on the part of family
members. These experiences can add to the stress resulting from concern
about the ill family member. This cumulative stress, especially in caregivers
compromised by morbidity accompanying their own aging (Jepson et al.,
1999), can be so substantial that family members acting as caregivers
themselves have an increased likelihood of experiencing depression, other
adverse health effects, and earlier death (Schultz and Beach, 1999; Kurtz
et al., 2004).
Moreover, high stress levels in caregivers can interfere with their ability
to provide the emotional or logistical support patients need. Problematic
family relationships that predate the onset of cancer also can lead to in-
adequate support from the family (Kotkamp-Mothes et al., 2005). Both
of these situations can exacerbate the patient’s stress, which in turn can
contribute to the patient’s poorer adjustment to the illness. Thus, attending
to the needs of the families of patients not only will benefit family mem-
bers, but also may help patients with their own emotional responses and
management of their disease.
Adverse Effects on the Larger Community
As described in Chapter 1, a significant percentage of adults stop
working or experience a change in employment (reduction in work hours,
interruption in work, change in place of employment) subsequent to a

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�� CANCER CARE FOR THE WHOLE PATIENT
diagnosis of or treatment for cancer (IOM and NRC, 2006), with implica-
tions for their own lives and income. The evidence is not clear as to factors
that do and do not affect survivors’ return to work (Spelten et al., 2002).
Nonetheless, to the extent that unaddressed mental health problems such
as depression or other psychosocial problems associated with their disease
affect patients’ desire to continue or return to work or impair their perfor-
mance on the job, they, their families, and the workplace will be adversely
affected financially. Additionally, to the extent that caregivers give up work
outside of the home or reduce their work hours to provide care to a loved
one, workplace productivity will decrease.
Mental health problems associated with cancer may also have adverse
financial effects on the larger economy and on health care providers. How-
ever, with respect to effects on the larger economy, the financial costs of
failing to deliver psychosocial health services to individuals with cancer
have not been studied. Studies that have attempted to quantify the impact
of mental health problems on the cost of medical care have been based
on the effect of depression and/or anxiety on those with medical illnesses
other than cancer (Simon et al., 1995, 2002; Henk et al., 1996). Issues
pertaining to reimbursement of psychosocial health services are addressed
in Chapter 6.
CONCLUSIONS
Having examined the evidence presented in Chapter 1 about the preva-
lence of psychosocial problems among people with cancer and the extent
to which those problems are unaddressed by health care providers, as well
as the evidence reviewed in this chapter about how psychosocial problems
can adversely affect health, the committee concludes that all cancer patients
and their families are at heightened risk for emotional suffering, diminished
adherence to treatment, impaired work and social functioning, and as a
result, additional threats to their health beyond those directly imposed
by their cancer. As many prior studies on disparities in health care have
documented (IOM, 2003; Maly et al., 2006), these risks are greater in
populations already experiencing such social stressors as poverty, limited
education, language barriers, and/or membership in an ethnic or cultural
minority.
Failing to address these risks can adversely affect individuals with many
different types of illness. However, the trajectory of cancer often poses both
an immediate threat to life and threats to lifelong physical, psychological,
and social functioning as a result of the chronic physical and psychological
impairment and disability that can result from both the illness and its treat-
ment. Moreover, treatment for many cancers can itself be life-threatening.

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CONSEQUENCES OF UNMET PSYCHOSOCIAL NEEDS ��
These multiple threats make attention to psychosocial problems in cancer
patients and their families critically important. Although reducing psy-
chosocial stressors and improving psychosocial services may not increase
cancer “cure rates,” the committee concludes that
Addressing psychosocial needs should be an integral part of quality cancer
care. All components of the health care system that are in�ol�ed in cancer
care should explicitly incorporate attention to psychosocial needs into
their policies, practices, and standards addressing clinical medical practice.
These policies, practices, and standards should be aimed at ensuring the
pro�ision of psychosocial health ser�ices to all patients who need them.
Essential to this conclusion—and to this study overall—is the definition of
“psychosocial health services” developed by the committee:
Psychosocial health ser�ices are psychological and social ser�ices and in-
ter�entions that enable patients, their families, and health care pro�iders
to optimize biomedical health care and to manage the psychological/be-
ha�ioral and social aspects of illness and its consequences so as to promote
better health.
Several aspects of this definition merit discussion. First, a wide variety of
psychological and social services are delivered by providers of health and
human services. The committee uses the term “psychosocial health services”
to distinguish psychological/behavioral and social services that are delivered
to improve health and health care from psychosocial services provided to
achieve other goals. For example, psychosocial services are provided in the
child welfare and criminal/juvenile justice systems to meet such goals as
strengthening a family or preventing incarceration or reincarceration. These
are psychosocial services, but generally are provided outside of the health care
system, and in such settings are not thought of as health care services. While
a particular psychosocial service, such as mental health care, can be delivered
in more than one sector to help achieve multiple goals (e.g., improved health
and prevention of incarceration), when psychosocial services are proposed
as worthy of attention from the health care system, the intended effects on
health and health care services should be clear. By adopting the terminology
of psychosocial health services, the committee aims to define psychosocial
services in a way that recognizes the legitimate and sometimes different
purposes of such services across different health and human service sectors,
while simultaneously establishing an expectation for efficacy and effective-
ness in improving health or health care. Second, the committee’s definition
of psychosocial health services distinguishes between ser�ices directly needed
by the patient (e.g., treatment for depression or financial assistance) and the
inter�entions or strategies used to secure those services (e.g., screening, for-
mal referral, or case management). This distinction is elaborated in Chapters

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�0 CANCER CARE FOR THE WHOLE PATIENT
3 and 4. The rationale for and the significance of the committee’s definition
of psychosocial health services are discussed in detail in Appendix B.
Some might question whether effective psychosocial health services ex-
ist, exist in sufficient quantity, and are accessible to patients, and whether
aiming to ensure the provision of psychosocial health services to all pa-
tients in need is a feasible goal for oncology providers. Moreover, some
might question whether it is worthwhile to identify and attempt to address
psychosocial problems through means not typically thought of as medical
services, given that some psychosocial problems, such as poverty, are not
resolvable. There are several reasons why the committee believes this to be
a reasonable aim.
In the next chapter, the committee documents the finding of another
recent IOM report on cancer—that a “wealth” of cancer-related community
support services exists, many of which are available at no cost to patients
(IOM and NRC, 2006:229). The committee also notes that tools and tech-
niques needed to identify and address psychosocial problems already exist
and are in use by leading oncology providers. Although these tools and
techniques have not yet been perfected, and there is not currently as ample
a supply of psychosocial services as would be necessary to meet the needs of
all patients, the committee describes in the next three chapters psychosocial
services, tools, and interventions that do exist and are being used to help
patients manage their cancer, its consequences, and their health.
The committee urges all involved in the delivery of cancer care not
to allow the perfect to be the enemy of the good. There are many actions
that can be taken now to identify and deliver needed psychosocial health
services, even as the health care system works to improve their quantity and
effectiveness. The committee believes that the inability to solve all psychoso-
cial problems permanently should not preclude attempts to remedy as many
as possible—a stance akin to oncologists’ commitment to treating cancer
even when the successful outcome of every treatment is not assured.
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�1
3
Psychosocial Health Services
CHAPTER SUMMARY
A range of ser�ices can help patients and their families manage the
psychological/beha�ioral and social aspects of illness that can ad�ersely
affect their health care and outcomes. An indi�idual’s own psychological
and informal social resources often counteract many of these stressors.
Howe�er, when these resources are not a�ailable or are o�erwhelmed by
the number, magnitude, or duration of stressors, or when a problem re-
quires professional inter�ention, formal ser�ices are needed.
E�idence supports the effecti�eness of ser�ices aimed at relie�ing
the emotional distress that accompanies many chronic illnesses, includ-
ing cancer, e�en in the case of debilitating depression and anxiety. Good
e�idence also underpins a number of inter�entions designed to help indi-
�iduals adopt beha�iors that can help them manage disease symptoms and
impro�e their o�erall health. Other psychosocial health ser�ices, such as
transportation to health care or financial assistance to purchase medica-
tions or supplies, while not the subject of effecti�eness research, ha�e wide
acceptance as humane inter�entions to address related needs, and are long-
standing components of such public programs as Medicaid and the Older
Americans Act. Many health and human ser�ice pro�iders deli�er one or
more of these ser�ices. In particular, strong leadership of organizations
in the �oluntary sector has created a broad array of psychosocial sup-
port ser�ices—sometimes a�ailable at no cost to patients. Together, these
ser�ices ha�e been described as constituting a “wealth of cancer-related
community support ser�ices” (IOM and NRC, 2006:229).

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�2 CANCER CARE FOR THE WHOLE PATIENT
A DIVERSITY OF SERVICES
An array of services exists to address the varied psychosocial problems
and needs (summarized in Chapter 1) that often accompany cancer and
its treatment (see Table 3-1). As defined in Chapter 2, psychosocial health
services are those psychological and social services that enable patients,
their families, and health care providers to optimize biomedical health
TABLE 3-1 Psychosocial Needs and Formala Services to Address Them
Psychosocial Need Health Services
Information about
illness, treatments,
health, and services
• Provision of information, e.g., on illness, treatments, effects
on health, and psychosocial services, and help to patients/
families in understanding and using the information
Help in coping with
emotions accompanying
illness and treatment
• Peer support programs
• Counseling/psychotherapy to individuals or groups
• Pharmacological management of mental symptoms
Help in managing illness • Comprehensive illness self-management/self-care programs
Assistance in changing
behaviors to minimize
impact of disease
• Behavioral/health promotion interventions, such as:
– Provider assessment/monitoring of health behaviors (e.g.,
smoking, exercise)
– Brief physician counseling
– Patient education, e.g., in cancer-related health risks and
risk-reduction measures
Material and logistical
resources, such as
transportation
• Provision of resources
Help in managing
disruptions in work,
school, and family life
• Family and caregiver education
• Assistance with activities of daily living (ADLs), instrumental
ADLs, chores
• Legal protections and services, e.g., under Americans with
Disabilities Act and Family and Medical Leave Act
• Cognitive testing and educational assistance
Financial advice and/or
assistance
• Financial planning/counseling, including management of
day-to-day activities such as bill paying
• Insurance (e.g., health, disability) counseling
• Eligibility assessment/counseling for other benefits (e.g.,
Supplemental Security Income, Social Security Disability
Income)
• Supplement financial grants
aThe committee notes that, as discussed in Chapters 1 and 2, family members and friends
and other informal sources of support are key providers of psychosocial health services.
This table includes only formal sources of psychosocial support—those that must be secured
through the assistance of an organization or agency that in some way enables the provision
of needed services (sometimes at no cost or through volunteers).

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PSYCHOSOCIAL HEALTH SERVICES ��
care and to manage the psychological/behavioral and social aspects of
illness and its consequences so as to promote better health. We note that
some level of psychosocial support (e.g., providing emotional support and
information about one’s illness) accompanies much of routine health care.
Family members and other informal supports also meet many emotional
and logistical needs in times of illness. However, when this level or type
of support is insufficient to address a patient’s needs, more formal services
are needed. Definitions and descriptions of these services and the extent of
evidence supporting their effectiveness in meeting identified patient needs
are discussed below.
In addition to these ser�ices to address problems that arise at the level
of the patient (the need for which will likely vary among individuals), psy-
chosocial inter�entions are needed on a more uniform basis within clinical
practices to address problems arising at the level of the health care system,
such as failure to identify patients’ psychosocial needs, to link patients to
effective services, and to support them in managing their illness and health.
These more consistently needed provider- and system-level interventions to
deliver effective psychosocial services are discussed in Chapters 4 and 5.
EVIDENCE OF EFFECTIVENESS
The effectiveness of some psychosocial health services has been sub-
stantiated through research. Others (such as the provision of transportation
or financial assistance to purchase medications) have such long-stand-
ing and wide acceptance that they have not been the subject of much
research interest. Others addressed in more recent effectiveness research
appear promising, but require further study to clarify the extent of their
effectiveness. Interest remains high in still others that have not yet shown
effectiveness in research studies as multiple parties seek effective ways to
meet pressing needs. This variation in the extent to which psychosocial
health services are evidence based is similar to the variation seen in research
findings supporting the effectiveness of individual biomedical health care
services (Neumann et al., 2005; IOM, 2007). The approach used by the
committee to evaluate the effectiveness of individual psychosocial health
services is described in Appendix B.
Limitations in Taxonomy and Nomenclature
A serious problem encountered by the committee as it sought to identify
and evaluate evidence of the effectiveness of psychosocial health services
is the lack of a taxonomy and nomenclature for referring to these services.
This is manifest in the controlled vocabularies of major bibliographic da-
tabases and other indexing services. For example, the term “psychosocial”

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�� CANCER CARE FOR THE WHOLE PATIENT
is not a medical subject heading (MeSH) used for indexing publications by
the National Library of Medicine, and as of April 30, 2007, no conceptual
definition of “psychosocial” could be found in the National Cancer Insti-
tute’s Metathesaurus (http://ncimeta.nci.nih.gov) or Dictionary of Cancer
Terms (http://www.cancer.gov/dictionary/). Moreover, when the terminol-
ogy “psychosocial services” is used in health care, it is used inconsistently.
As a result, the committee’s first task was to agree upon a definition of
psychosocial services to guide its work. The committee’s review of different
definitions in the field and its considerations in developing the definition put
forth in Chapter 2 are discussed in Appendix B.
Examining the effectiveness of indi�idual psychosocial services is simi-
larly confounded by absent or imprecise terminology within and across da-
tabases such as MeSH/Medline, PsycINFO, CINAHL (Cumulative Index to
Nursing and Allied Health Literature), and EMBASE. For example, “peer
support” is not a MeSH heading. Moreover, even when different research-
ers use the same word, it may not always refer to the same intervention. For
example, group psychotherapy (Goodwin, 2005), peer support delivered
in a group situation (Ussher et al., 2006), group education (Weis, 2003),
and varying combinations of these (Weis, 2003) (not always identified as
multicomponent interventions) are all frequently labeled “support group”
interventions—which unsurprisingly have been found to have inconsistent
effects. Similarly, “illness self-management” or “self-management” is not
a MeSH heading; it awkwardly and imprecisely maps to “self-care” in the
MeSH database. In oncology, many illness self-management or self-care
interventions are also referred to as psychoeducation or, more recently,
cognitive-behavioral interventions.
The imprecise and unreliable vocabulary used to refer to psychoso-
cial services is manifest in evidence reviews and analyses of the effective-
ness of “psychosocial services” in toto. For example, the series of articles
entitled “The Great Debate” (Relman and Angell, 2002; Williams and
Schneiderman, 2002; Williams et al., 2002)—whose titles (“Resolved: Psy-
chosocial Interventions Can Improve Clinical Outcomes in Organic Disease
[Pro]” and “Resolved: Psychosocial Interventions Can Improve Clinical
Outcomes in Organic Disease [Con]”) and some of their content suggest the
methodological soundness (and desirability) of lumping together divergent
psychosocial health services and rendering an overarching judgment about
their effectiveness. Reviews of the effectiveness of aggregate psychosocial
services are problematic just as such reviews of the effectiveness of biomedi-
cal health care in the aggregate would be unhelpful (and unlikely)—a point
made in the concluding article in the “Great Debate” series (see Lundberg,
2002). The committee determined that the absence of a controlled vo-
cabulary impedes the identification, interpretation, and implementation

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PSYCHOSOCIAL HEALTH SERVICES ��
of research findings on psychosocial health care, and therefore makes the
following recommendation.
Recommendation: Standardized nomenclature. To facilitate research
on and quality measurement of psychosocial interventions, the Na-
tional Institutes of Health (NIH) and the Agency for Healthcare Re-
search and Quality (AHRQ) should create and lead an initiative to
develop a standardized, transdisciplinary taxonomy and nomenclature
for psychosocial health services. This initiative should aim to incor-
porate this taxonomy and nomenclature into such databases as the
National Library of Medicine’s Medical Subject Headings (MeSH),
PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health
Literature), and EMBASE.
Evidence Reviews
Pro�ision of Information
As discussed in Chapter 1, individuals who are being treated for cancer
express the need for a wide range of information on their clinical condition
and care. Patients need information about the onset, progression, treat-
ment, and management of their disease and help in interpreting sometimes
overwhelming quantities of complex information. They need to be able to
find out about the normal course of their condition, the treatments that are
available, and those treatments’ expected outcomes and side effects so they
can make treatment decisions that are consistent with their preferences and
care for themselves on a daily basis. Continuing changes in health care de-
livery and financing also make it increasingly important for cancer patients
to have information that will help ensure that they receive high-quality
care. This means having access to information about the qualifications of
physicians; the relative quality ratings for hospitals and the insurance plans
in which they participate; and costs for diagnostic tests, treatments, and
hospitalization. It also means being able to obtain information on such
services as transportation and other logistical resources, financial assistance,
and support groups in the area.
As with the array of psychosocial health services generally, the effec-
tiveness of providing patients with these different types of information has
not uniformly been the subject of research. The provision of information
about insurance coverage or sources for obtaining wigs, financial support,
or logistical assistance, for example, typically is not questioned as a use-
ful service. The broad range of voluntary organizations that provide such
information at no cost to consumers and the volume of patient inquiries

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�� CANCER CARE FOR THE WHOLE PATIENT
they handle are further testimony to their usefulness. (A table listing se-
lected nationwide sources of information on cancer and cancer-related
services available at no cost to patients is presented in the next section of
this chapter.)
In contrast, providing patients with information to enable them to care
for themselves on a daily basis and make treatment decisions that best meet
their goals and values has been the subject of much research. Indeed, the
Institute of Medicine (IOM) has previously recommended that, “patients
should be given the necessary information and the opportunity to exercise
the degree of control they choose over health care decisions that affect
them. The health system should be able to accommodate differences in pa-
tient preferences and encourage shared decision making” (IOM, 2001:8).
Although there is little evidence that providing information about the
onset, progression, treatment, and management of their disease system-
atically affects patient behaviors that in turn influence health outcomes, a
substantial literature documents the beneficial effects of interventions aimed
at improving patients’ participation in their care (Coulter and Ellins, 2006).
While providing patients with information about their illness and potential
treatments will always be only one of many factors that influence a specific
behavior, it is clearly an important aspect of improving their participation
in their care.
The effect of providing condition-specific information tailored to the
individual patient’s medical situation or condition has been the subject
of many randomized controlled trials involving patients with cancer and
other conditions, such as low back pain, diabetes, arthritis, and asthma. An
analysis of systematic reviews of the effects of provision of health informa-
tion found that, although the provision of information on the treatment
and management of disease did not affect health status, written information
improved knowledge and recall of health information, and the provision
of verbal and written information together had a greater impact than the
provision of either alone (Coulter and Ellins, 2006).
A variety of strategies for transmitting information about their disease
and its treatment to cancer patients have been tested in high-quality ran-
domized controlled trials. Such strategies include presenting information
through print materials, audiotapes, CD-ROMs, computer decision aids,
and videotapes. These studies have found evidence for the effectiveness of
such strategies in increasing knowledge and satisfaction with decision mak-
ing, as well as reducing decisional conflict (Epstein and Street, 2007).
For example, McPherson and colleagues (2001) conducted a systematic
review to determine effective methods of information delivery to cancer
patients. Ten studies met the inclusion criteria, covering interventions us-
ing audiovisual aids, audiotapes, interactive media, and written informa-
tion. Written information was found to enhance recall and knowledge,
and patients and their families valued practical information booklets. Two

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PSYCHOSOCIAL HEALTH SERVICES ��
important findings from the review are that cancer patients are a hetero-
geneous population whose information needs differ according to their
preferences and coping styles, and that tailoring information to the patient
reduces the amount of information needed and increases the relevance and
recall of the information provided (McPherson et al., 2001).
Another systematic review of cancer patients’ use of the Internet and
its impact on health outcomes identified 24 surveys representing a total of
8,679 patients with cancer. Four types of Internet use were identified: com-
munication (e-mail), community (virtual support groups), content (health
information), and e-commerce. While a great majority of the studies on
providing information to cancer patients have evaluated print materials
and computer-based personalization of information, the modest amount of
research findings on Internet-based information indicates that it has posi-
tive effects on self-efficacy (a person’s belief in his/her ability to carry out
a course of action to reach a desired goal) and task behavior, encourages
patients to make health-related decisions, and improves confidence in the
doctor–patient encounter. However, patients reported feeling overwhelmed
by the sheer volume of information available on line and were confused by
conflicting medical information on cancer treatment (Eysenbach, 2003).
It is particularly important to provide patients with information about
treatment decisions so that they can participate in choosing among available
effective options. Decision-support tools array such information in a way
that enables patients to compare the risks and benefits of different treat-
ments that are suited to their situation. An analysis of systematic reviews of
decision aids for patients found that, as with the provision of information
on disease and its treatment generally, such aids improve knowledge and
information recall and lead to increased involvement in the decision-making
process, and that patients who use them experience less decisional conflict.
There is limited evidence that decision aids affect health service utilization
in a way that in some cases leads to reduced costs, but no effects on health
outcomes have been demonstrated (Coulter and Ellins, 2006).
Multicomponent educational interventions, such as those including use
of an educational audiotape, workbook, and values clarification exercise,
also have been designed to provide the information patients need. One well-
conducted randomized controlled trial (Goel et al., 2001) among surgical
practices in Canada involving women with breast cancer who needed to
decide between breast-conserving treatment and mastectomy found evi-
dence of the effectiveness of such a multicomponent intervention, but only
for women who were uncertain about what decision to make. There is
some evidence that nonprint formats are of greater benefit for underserved
groups and that these formats have an impact on health behavior (Coulter
and Ellins, 2006). Nonprint formats are also useful in communicating with
individuals with low literacy.

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�� CANCER CARE FOR THE WHOLE PATIENT
Ser�ices to Help Cope with Emotions
A wide variety of mental health therapies have been developed to treat
emotional distress and mental health problems.1 Although it was beyond
the scope of this report to examine the evidence in support of all types
of services to address all manifestations of emotional distress and mental
health problems in individuals with cancer,2 the discussion below reviews
peer support programs selected because of their widespread use and avail-
ability, as well as counseling/psychotherapy and medications that address
depression and anxiety—among the most common mental health condi-
tions affecting individuals diagnosed with cancer.
Peer support programs Peer support is defined as a relationship in which
people with the same condition provide emotional support to each other
and share knowledge about dealing effectively with that condition. Vicari-
ously experiencing the successes of others similar to oneself is a primary
pathway to building one’s own self-efficacy (Bandura, 1997). Self-efficacy
is viewed as a key predictor of how effectively individuals can motivate
themselves and persevere in the face of adversity, how much effort they will
make in pursuing a course of action, and what their emotional reactions to
the course of events will be. Self-efficacy is also an important determinant
of how extensively knowledge and skills are obtained (Pajares, 2002), and
there is evidence that it is a critical factor in an individual’s successful self-
management of a range of chronic illnesses (Lorig et al., 2001; Lorig and
Holman, 2003).
Peer support programs can provide one-on-one support (as in the
American Cancer Society’s Reach to Recovery program) or support from
groups. Peer support groups (also called self or mutual support groups)
have been studied most often. Emotional support is a primary component
of peer support groups (Weis, 2003; Ussher et al., 2006). These groups
also typically provide information and education, sharing of coping skills,
acceptance by others in similar situations, a sense of normalcy, and dimin-
ished social isolation (Barlow et al., 2000; Campbell et al., 2004). Many
of these supports are the same as those provided by beneficial informal
social networks described in Chapter 2, which have been found to reduce
1 In child and adolescent therapy alone, for example, it is conservatively estimated that,
even if one omits various combinations of treatments and variants of treatments that are not
substantially different, there are more than 550 psychotherapies in use (Kazdin, 2000).
2 For example, this report does not address the unique clinical treatment issues of individuals
with mental illnesses such as schizophrenia and psychotic disorders. However, the access to
specialized mental health services described in Chapter 6 pertains to cancer patients with all
types of mental health problems and illness, not just those described in this chapter. The reader
is directed to a recent IOM report, Impro�ing the Quality of Health Care for Mental and
Substance-Use Conditions (IOM, 2006), which addresses approaches to coordinating mental
health care with other medical care for all types of mental health conditions.

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PSYCHOSOCIAL HEALTH SERVICES ��
morbidity and mortality. Expected outcomes include increased confidence
and a sense of control in relation to self, improved coping with one’s illness,
and more effective interactions with others, particularly medical profes-
sionals. Together, these outcomes promote a helpful sense of self-efficacy in
dealing with the varied challenges of the illness and its treatment (Bandura,
1997; Thaxton et al., 2005; Ussher et al., 2006).
Peer support groups are widely used to help people with a broad range
of illnesses. One of the largest and most successful is Alcoholics Anony-
mous. Support groups for people living with HIV or AIDS are another ex-
ample (Spirig, 1998). Such groups are often developed by individuals who
feel marginalized socially by their illness because of the associated stigma,
disfigured appearance, embarrassment, disability, or threat to life (Davison
et al., 2000). After World War II, assisted by the American Cancer Society,
patients who had had a laryngectomy, colostomy, or mastectomy began
to form support groups in major cities to help cope with these permanent
and stigmatizing body changes. Today, support groups for cancer patients
are organized through nonprofit advocacy organizations—some devoted to
patients with a particular form of cancer (e.g., The Leukemia & Lymphoma
Society) and others, such as Gilda’s Clubs, The Wellness Community, and
CancerCare, with a more general focus. These support groups are the most
widely available form of free psychological assistance for patients with
cancer.
Peer groups have developed to help patients of all ages cope with
cancer in all of its stages: at diagnosis, during active treatment, and dur-
ing advanced disease (Plante et al., 2001). They are used most widely by
patients with particular forms of cancer, the most common being prostate
and breast (e.g., Us Too groups for prostate cancer and breast cancer sup-
port groups) (Goodwin, 2005). Today, the support offered by such groups
frequently includes services from a health or human services professional,
such as a physician, nurse, psychologist, or social worker, who facilitates
group meetings or provides patient education or other services to the group.
In fact, many groups that are called peer groups actually have co-leaders
who are professionals. This involvement from health care providers often
makes a “pure” peer group difficult to define; most groups today are to
some extent hybrids involving both consumer peers and professionals. Re-
search comparing peer and professionally led support groups has found no
difference as long as the sense of community and mutual respect is main-
tained (Barlow et al., 2000).
Research on the effectiveness of peer support groups has been difficult
because such groups often arise naturally out of communities when people
sense a need,3 and therefore do not easily lend themselves to the control
of variables as is required to conduct controlled clinical trials. The varied
3 And not all patients want to participate in a support group.

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�0 CANCER CARE FOR THE WHOLE PATIENT
components of support groups (e.g., group psychotherapy, informal emo-
tional support, education and information) and the diverse participants and
facilitators also confound the interpretation of research findings. According
to Davison and colleagues (2000:216) in their review of the state of the art
of peer support, “Support groups constitute a category with fuzzy bound-
aries, and as such they make scientists uneasy. In the interest of elegance
and experimental control, we often prefer mutually exclusive categories
and singular causal models. . . . Support groups cannot be replicated in the
lab, but the tendency of some types of patients to seek each other’s compa-
ny . . . emerges statistically as a clear pattern replicated across cities.”
Although evidence for the effectiveness of peer support interventions
is less clear than desirable, overall it supports their effectiveness in bring-
ing about a number of desirable outcomes—such as improved knowledge,
coping skills, and sense of self-efficacy—across a wide range of mental and
general medical conditions, including HIV/AIDS (Spirig, 1998) and cancer
(Barlow et al., 2000; Dunn et al., 2003; National Breast Cancer Centre and
National Cancer Control Initiative, 2003; Campbell et al., 2004; Zabalegui
et al., 2005; Ussher et al., 2006). However, not all patients may need or
benefit equally from participation in peer support groups (Helgeson et al.,
2000); those with the lowest self-esteem and self-efficacy in coping with
depressive symptoms appear to benefit most (Helgeson et al., 2006).
Better understanding of the effectiveness of peer support groups will
require more randomized controlled trials in which the participants, con-
tent, and outcome variables are clearly delineated. These trials also should
involve multiple centers so as to encompass populations of sufficient size
to allow study of subsamples and types, duration, and content of interven-
tions. Use of a standard set of outcome measures across studies also would
allow more meaningful comparisons across studies through meta-analysis.
Research is needed as well that compares group formats so as to identify
the treatment and personal variables that lead to the best and poorest
outcomes. Moreover, most peer support groups have developed in middle-
class, Caucasian, and female populations; studies involving other ethnic
and socioeconomic groups and men are needed, as are studies of one-to-one
forms of peer support.
The Internet is widely used for providing “virtual” peer support groups.
Although such groups are difficult to monitor with respect to their deliv-
ery and quality of services (when no facilitator modulates interactions)
and will not be easy to evaluate for efficacy, their increasing use suggests
that research also should be directed toward assessment of their efficacy,
especially since they provide a means to reach home-bound and geographi-
cally isolated patients at minimal expense (Eysenbach et al., 2004; Hoybye
et al., 2005; Lieberman and Goldstein, 2005; Winefield, 2006; Stein et al.,
2007).

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES �1
Counseling and psychotherapy Counseling and psychotherapy encompass
“a wide range of techniques used by a designated professional that have as
their common feature the attempt to influence the patient’s behavior, emo-
tions, thoughts, and attitudes through psychological techniques, most often
verbal interchange, in the relationship between the psychotherapist and the
patient” (Klerman, 1989:1730). Although counseling and psychotherapy
have been found to be effective for a number of different mental health
problems in patients with a range of general medical illnesses (Wells et al.,
1988; Schulberg et al., 1998), findings on their effectiveness in helping
patients with cancer and analyses of these findings in the aggregate have
been mixed.
The large number of research trials of psychotherapeutic interventions
with adult patients4 (conducted at all stages of disease, though focusing
mainly on newly diagnosed patients, those in active treatment, and those
with metastatic disease) has enabled several meta-analyses and other sys-
tematic reviews of the evidence. These reviews also have yielded mixed
results because of variations in the criteria established for inclusion as an
adequately designed clinical trial; however, they generally have found that
evidence supports the efficacy of psychotherapy in the treatment of anxiety
and depressive symptoms in adults (Devine et al., 1995; Meyer and Mark,
1995; Sheard and Maguire, 1999; AHRQ, 2002; Barsevick et al., 2002;
Rehse and Pukrop, 2003; Pirl, 2004; Jacobsen et al., 2006). In a debate in
the Annals of Beha�ioral Medicine, Andrykowski and Manne (2006) reason
that clinically relevant efficacy can be assumed on the basis of two or more
well-conducted randomized controlled trials utilizing Consolidated Stan-
dards of Reporting Trials (CONSORT) criteria. When criteria for efficacy
are highly restrictive (as in Newell et al., 2002—that is, requiring greater
than half of outcome measures to be statistically significant)—evidence for
efficacy appears to be weaker (Coyne et al., 2006). An additional problem
contributing to the mixed results of these analyses appears to be related in
part to the fact that most early studies of these psychosocial services did
not require elevation of a baseline target symptom in subjects, thus dimin-
ishing the likelihood of showing a significant reduction in the identified
symptom in some studies. Jacobsen and colleagues’ (2006) comprehensive
review found that fewer than 5 percent of studies had required a clinically
significant baseline level of distress in their design, an observation made by
Sheard and Maguire (1999) years earlier. Nonetheless, the norm for studies
of these psychosocial interventions has been to include all patients, regard-
less of their level of distress.
4 Less research has been conducted on psychological interventions with children with cancer,
in part because of their small numbers and evidence showing low levels of psychopathology
in children as a group (Patenaude and Kupst, 2005; Pai et al., 2006).

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�2 CANCER CARE FOR THE WHOLE PATIENT
Having reviewed the various systematic reviews and individual stud-
ies, the committee concludes that there is statistically significant, clini-
cally relevant evidence to support the effectiveness of psychotherapeutic
interventions in helping to manage anxiety or depression in adults with
cancer—across disease sites, treatments, and types of interventions (e.g.,
psychoeducation, supportive therapies, cognitive therapies, relaxation tech-
niques), and delivered to both individuals and groups. These findings apply
despite the wide range of interventions, diversity of patients, and variety
of study designs. The review of 60 studies by Jacobsen and colleagues
(2006), examining only well-designed controlled studies with clinically rel-
evant outcome data, found support for incorporating tested interventions
into clinical practice guidelines. The National Cancer Control Initiative
in Australia similarly found strong evidence for interventions that used
cognitive-behavioral, supportive, and psychoeducational approaches for the
management of depression and anxiety (National Breast Cancer Centre and
National Cancer Control Initiative, 2003). Evidence with respect to three
key types of psychotherapies is summarized below:
• Cogniti�e-beha�ioral therapy—This approach has been the most
widely studied in randomized controlled trials and has been shown
to help reduce psychological symptoms (anxiety and depression),
as well as the physical symptoms of pain, nausea/vomiting, and
fatigue, most effectively during the initial and treatment phases of
illness. The approach involves teaching problem solving, reframing
of thoughts, and ways of constructive coping, and often includes
relaxation and guided imagery. The adjuvant therapy developed by
Greer and colleagues is a well-studied model based on these prin-
ciples (Greer et al., 1992; Moorey et al., 1994; Moynihan et al.,
1998). Two studies (Nezu et al., 2003; Boesen et al., 2005) using
cognitive-behavioral skill-based interventions found they were most
beneficial for those who entered the trial with highest distress.
• Supporti�e psychotherapy—This approach involves providing
emotional support and encouragement, focusing on emotional re-
sponses, and encouraging adaptive coping. Randomized trials have
tested manualized supportive-expressive and supportive-existential
psychotherapy for patients with early and advanced disease. All
of these trials have shown efficacy in reducing distress, improving
quality of life, and helping patients cope with the physical aspects
of illness. Overall, there is strong evidence from clinical trials that
these approaches yield benefits in reducing anxiety and depres-
sive symptoms and improving well-being (Spiegel et al., 1981;
Goodwin et al., 2001; Kissane et al., 2007). Another type of sup-
portive psychotherapy—interpersonal psychotherapy—focuses on

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES ��
the role changes and the conflicts and strains related to illness. The
approach has been studied for treatment of depression in patients
with HIV/AIDS (Markowitz et al., 1993) with good results. Similar
results were obtained in small trials in which the approach was
adapted for use with cancer patients, being delivered face to face
and by telephone for homebound patients by trained counselors
using a manual (Alter et al., 1996; Donnelly et al., 2000). In prac-
tice, supportive psychotherapy is a flexible therapeutic approach
in which a skilled therapist applies aspects of cognitive-behavioral
therapy and psychodynamic concepts while providing emotional
support. The emphasis varies depending on the stage of illness
and the level of severity of psychosocial and physical problems
(Berglund et al., 1994a; Evans and Connis, 1995; McArdle et al.,
1996). It is difficult to design controlled clinical trials that take into
account the need for such flexibility in therapy.
• Family and couples therapy—While not widely studied in con-
trolled trials involving patients with cancer, therapies that result in
increased communication and cohesion and reduction of conflicts
due to the strain of illness in one member appear to be of most
benefit for families with dysfunctional issues (Kissane et al., 2006).
The approach taken may be largely cognitive-behavioral or sup-
portive therapy. Couples therapy has been studied in patients with
cancer and has been found to be useful in reducing illness-related
conflicts, particularly when there is sexual dysfunction involved
(Manne et al., 2006).
In addition to evidence on the effectiveness of specific types of counsel-
ing or psychotherapy, there is interest in the effectiveness of counseling and
psychotherapy when delivered via telephone, Internet, or other electronic
communication technologies (e.g., teleconferencing). Telepsychiatry and
counseling via phone have been recommended as approaches for deliver-
ing mental health services to patients in remote locations or in areas with
a shortage of mental health professionals (McGinty et al., 2006), and there
is evidence of their effectiveness (Marcus et al., 1998; Ruskin et al., 2004).
(See Chapter 5 for a discussion of the use of remote resources to meet
psychosocial health needs.) A recent systematic review of telephone-based
interventions for mental illness also found evidence of their effectiveness,
but noted that the limited number of studies conducted, their small sample
sizes, and the lack of a randomized controlled trial methodology prevent
drawing firm conclusions. The authors call for large-scale, randomized
controlled trials to increase understanding of the efficacy of telephone in-
terventions (Leach and Christensen, 2006). A recent IOM report similarly
noted that use of Internet-mediated and other communications technologies

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�� CANCER CARE FOR THE WHOLE PATIENT
for the delivery of mental health services requires additional effectiveness
research, as well as specialized training of clinicians, additional protection
of consumer information, and mechanisms for ensuring the competencies
of those who provide such forms of care (IOM, 2006).
More helpful evidence about how best to deliver psychotherapeutic
services could be produced through (1) use of large randomized trials of
psychotherapeutic interventions of high quality using CONSORT guide-
lines; (2) intervention studies of patients with particularly stigmatizing
forms of cancer, such as lung cancer; (3) more studies of men with a range
of cancers, particularly prostate and colon; (4) more studies with children;
(5) effectiveness and dissemination studies designed to adapt, implement,
and test interventions with proven efficacy in routine clinical settings (as
well as adaptations for telephone or Internet application); (6) studies of
psychotherapeutic interventions in ethnically diverse populations; (7) in-
tervention trials that would identify patients with elevated levels of tar-
geted symptoms of anxiety or depression, or both, at baseline to permit
assessment of clinically relevant levels of symptom change; and (8) studies
including analysis of data from clinical trial settings with respect to cost in
real-world clinical settings.
Psychopharmacological services Psychopharmacological services comprise
the use of a range of medications known as psychotropic drugs to reduce
anxiety, depression, and other mental health symptoms. These drugs have
been well tested in clinical trials in depressed adults with cardiac dis-
ease, stroke, and diabetes, with results strongly supporting their efficacy
(Jacobsen and Weinger, 1998; Lustman et al., 1992; Glassman et al., 2002;
Rassmussen et al., 2003; Gill and Hatcher, 2006; Simon et al., 2007). Yet
there have been few large-scale randomized controlled trials of psychotropic
agents in patients with cancer, in part because of (1) high rates of attrition
of study participants due to progressive illness and (2) symptoms of cancer,
such as fatigue, that mimic symptoms of depression.
However, recent research and systematic reviews of research on the
use of antidepressants (tricyclics, selective serotonin reuptake inhibitors
[SSRIs], atypical antidepressants, a psychostimulant) and antianxiety drugs
(benzodiazepines) in adult cancer patients suggest that they reduce depres-
sive symptoms, major depression, and anxiety in these patients, though
fewer of the studies focused on anxiety (National Breast Cancer Centre
and National Cancer Control Initiative, 2003; Pirl, 2004; Jacobsen et al.,
2006; Williams and Dale, 2006; Rodin et al., 2007). Results of several
modest-sized trials also suggest the efficacy of antidepressants in the control
of anxiety and depressive symptoms in adult patients with cancer (Costa
et al., 1985; Holland et al., 1991, 1998; Wald et al., 1993; Heeringen and
Zivkov, 1996; Razavi et al., 1996, 1999; Ly et al., 2002; Fisch et al., 2003;

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES ��
Jacobsen et al., 2006). The review of Jacobsen and colleagues (2006) found
that antidepressants and anxiolytics are effective in preventing and reliev-
ing depression and anxiety and may be recommended in clinical practice
guidelines. A similar conclusion was reached by Australia’s National Breast
Cancer Centre and National Cancer Control Initiative (2003) and the
National Comprehensive Cancer Network in the United States (Distress
Management Guidelines Panel, 2003). Of note, one trial found that use
of an SSRI prevented the development of depression in patients vulnerable
to interferon-induced depressive symptoms/depression (Musselman et al.,
2001). There is no evidence suggesting greater efficacy of one drug over
others (Pirl, 2004; Jacobsen et al., 2006; Williams and Dale, 2006).
It will be necessary to have more multicenter controlled randomized
trials using larger patient cohorts studied over longer periods to better as-
sess the potential efficacy of drugs that may be slow in achieving clinical
effects. Trials should be limited to patients with clearly defined significant
levels of anxious or depressive symptoms at baseline, such as severe adjust-
ment disorder with anxious or depressive symptoms or anxiety disorder,
post-traumatic stress disorder, or mood disorder, to ensure the opportunity
to observe a reduction in symptoms. Studies also are needed to compare the
efficacy of one drug over another for a targeted symptom. Given the efficacy
of psychotherapeutic services and psychotropic drugs in cancer patients, tri-
als comparing the effectiveness of medications alone, psychotherapy alone,
and the two combined should be conducted, as has been done in cardiac
patients. Moreover, there is a critical need to examine the use of SSRIs and
anxiolytics in adolescents with cancer since currently there is virtually no
information base to generalize to pediatric oncology.
Help in Managing Illness Comprehensi�ely
Illness self-management is defined as an individual’s “ability to man-
age the symptoms, treatment, physical and psychosocial consequences
and lifestyle changes inherent in living with a chronic condition” (Barlow
et al., 2002:178). In general, interventions designed to support illness self-
management include providing basic information about the illness and its
treatment; providing education and coaching in skills needed to manage
the illness, control symptoms, and interact with the health care system;
and increasing patient self-efficacy (Lev et al., 2001). Education and coach-
ing are generally tailored to the needs and learning styles of individual
patients, encourage patients’ active participation in their care, and involve
some form of problem-solving assistance. These basic elements of self-
management support have often been combined with specific psychologi-
cal or physical modalities, such as relaxation response or exercise. There
is now considerable evidence for many chronic diseases other than cancer

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�� CANCER CARE FOR THE WHOLE PATIENT
that interventions directed at improving patient knowledge, skills, and con-
fidence in managing the illness improve outcomes (Chodosh et al., 2005).
One of the best-studied illness self-management programs, found effective
in randomized controlled trials, is the Chronic Disease Self-Management
Program developed and offered by Stanford University School of Medicine
(Stanford University School of Medicine, 2007). Self-management programs
for a variety of chronic illnesses based on this model have been found to be
effective in reducing pain and disability, lessening fatigue, decreasing needed
visits to physicians and emergency rooms, and increasing self-reported en-
ergy and health for a variety of chronic illnesses, including heart disease,
lung disease, stroke, and arthritis (Lorig et al., 2001; Bodenheimer et al.,
2002; Lorig and Holman, 2003).5,6
The term “illness self-management” is most often associated with con-
ditions such as diabetes mellitus for which lifestyle changes can significantly
affect the severity and progression of the disease. For this reason, it might
be thought that self-management may not apply to cancer care. The com-
mittee believes this would be an overly restrictive view of self-management
behaviors. In the cancer care literature, many interventions have been
designed to assist patients in coping with the various challenges presented
by the illness and its treatment, such as physical symptoms (e.g., fatigue
or nausea), psychological distress, sexual dysfunction, and interaction with
multiple providers. These interventions share a common premise with self-
management interventions for other chronic conditions—that patients (and
their families) have a major role to play in addressing or managing these
challenges, and their ability to fulfill this role competently can be improved
by information, empowerment, and other support.
Self-management and self-care interventions aimed at improving physi-
cal function and quality of life in cancer patients have typically focused
on the control of individual symptoms and generally have been individu-
ally administered by nurses, whereas self-management interventions in
patients with conditions other than cancer have more often been conducted
in groups. A limited number of interventions have targeted control of
nausea (Winningham and MacVicar, 1988), fatigue (Dimeo et al., 1999,
5 Stanford’s model also is a required component of the Administration on Aging’s public–
private collaborative grant program for states and local communities, Empowering Older Peo-
ple to Take More Control of Their Health Through Evidence-Based Prevention Programs.
6 Although many individuals with cancer have participated in the Stanford model of illness
self-management through 700 “master trainers” in the United States and worldwide, the Uni-
versity of Louisiana Brown Cancer Center also held two workshops targeting cancer survivors
that followed the Stanford model, and identified no areas needing modification for this group
(Personal communication. Karen S. Newton, MPH, RD, Project Director, Chronic Illness Ini-
tiatives, University of Louisville Department of Family and Geriatric Medicine via Kate Lorig,
RN, DrPH, Stanford Patient Education Research Center, September 5, 2006).

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PSYCHOSOCIAL HEALTH SERVICES ��
2004; Schwartz, 1999, 2000; Dimeo, 2001; Schwartz et al., 2001), pain
(Miaskowski et al., 2004), and lymphedema (McKenzie and Kalda, 2003).
These interventions (most often provided by nurses in the cancer care setting)
have been variously termed psychoeducational, self-care, self-management
support, and more recently, cognitive-behavioral interventions.7 They have
been administered to patients before therapy or the onset of symptoms as
prevention, to those experiencing symptoms or distress, or to those who
have completed therapy. They have included interventions provided by a
nurse alone or complemented by computer programs, video presentations,
and other tools. While there may be differences in the underlying theory,
the interventions included under the four rubrics of psychoeducation, self-
care, self-management support, and cognitive-behavioral interventions are
all designed to increase an individual’s skill in managing the illness and its
effects. However, some approaches to illness self-management used with
cancer patients have been delivered in combination with the provision of
skilled physical nursing care, which has confounded interpretation of the
effectiveness of the psychosocial component of care.
The PRO-SELF program, the most extensively tested strategy, targets
various symptoms of cancer and its treatment and has been evaluated in
multiple randomized trials (Larson et al., 1998; Dodd and Miaskowski,
2000; West et al., 2003; Kim et al., 2004; Miaskowski et al., 2004). The in-
tervention involves nurses coaching patients and their families. The content
includes information designed to assist patients “in managing the cancer
treatment experience,” including basic information about the disease and
its treatment, symptoms, and approaches to symptom management. In ad-
dition to this information, patients receive coaching in the skills necessary
to manage their symptoms—for example, mouth care for mucositis (Larson
et al., 1998) or opioid use for pain (Miaskowski et al., 2004)—and problem-
solving assistance. Studies of this strategy found significantly reduced pain
intensity and more appropriate use of opioids (Miaskowski et al., 2004).
Given and colleagues (2006) tested a cognitive-behavioral intervention that
included classes focused on self-management, problem-solving, and commu-
nication with providers. Those receiving the experimental intervention re-
ported significantly fewer severe symptoms at 10 and 20 weeks’ follow-up.
In randomized controlled trials, related interventions have been shown to
improve mood and vigor among patients with malignant melanoma (Boesen
et al., 2005), reduce psychological distress after radiotherapy (Stiegelis
et al., 2004), reduce fatigue and improve functional status among cancer
survivors (Gielissen et al., 2006), and improve sexual function and reduce
worry among patients with prostate cancer (Giesler et al., 2005).
McCorkle and colleagues have developed and studied interventions in
7 This is another example of the terminology problem discussed earlier in this chapter.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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�� CANCER CARE FOR THE WHOLE PATIENT
which nurses help cancer patients and their family caregivers manage the
impacts of the illness and its treatment. Delivered in the home by advanced
practice nurses, the interventions generally involve assessment of physical,
psychosocial, and functional health status; teaching, support, and counsel-
ing; the provision of hands-on skilled nursing care if needed; assistance in
accessing community resources; and coordination with other health care
providers and settings. In a series of randomized trials, these interventions
helped patients with lung cancer maintain independence longer and re-
duced rehospitalizations (McCorkle et al., 1989), improved mental health
status among patients with solid tumors (McCorkle et al., 1994), reduced
distress among the spouses of dying patients with lung cancer (McCorkle
et al., 1998), and improved survival among postsurgical cancer patients
(McCorkle et al., 2000).
Efforts to give patients with cancer and their families the information,
skills, and confidence needed to manage the physical, psychosocial, and
communication challenges associated with cancer and its care appear to be
warranted by the literature. Progress in this area could be accelerated by
the development of a taxonomy of interventions that, if used by researchers,
would help identify the components that contribute most to effectiveness.
Assistance in Changing Beha�iors to Minimize Impacts of Disease
Concurrent with the success of contemporary cancer therapies in curing
cancer or extending life expectancy and with the recognition that behavior
change can contribute to the prevention of some cancers, investigations of
lifestyle interventions aimed at promoting health in cancer survivors have
increased in number and priority. Such interventions are aimed at prevent-
ing the recurrence of cancer and improving overall health by addressing,
for example, tobacco and alcohol use, dietary practices, physical activity,
weight reduction, sun protection, and participation in disease surveillance
programs. Behavior change in several of these areas has been achieved
through such interventions as advice from physicians, counseling from peers
or trained clinical educators, and exercise training (Demark-Wahnefried
et al., 2006). Although the optimal methods for helping patients achieve
lasting behavior change are not fully known, the clear health advantages of
not smoking and adhering to diet and exercise guidelines, along with the
availability of some evidence to guide clinicians in helping patients make
beneficial changes in their health-related behaviors, support the need to
undertake such efforts. Progress made to date in modifying behaviors to
promote health in patients with cancer is reviewed below.
Tobacco control Approximately 20 percent of adults with a history of
cancer continue to smoke (Hewitt et al., 2003). Thus, tobacco control ini-
tiatives targeting cancer patients are critical to reducing or preventing the

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PSYCHOSOCIAL HEALTH SERVICES ��
risk of cardiovascular, pulmonary, and neoplastic sequelae that can be as-
sociated with specific cancer treatments and aging. A limited number of ran-
domized controlled trials have evaluated smoking cessation interventions in
patients with cancer (Gritz et al., 1993; Wewers et al., 1994; Griebel et al.,
1998; Browning et al., 2000; Sanderson Cox et al., 2002; Schnoll et al.,
2003, 2005; Emmons et al., 2005). These interventions generally employ
cognitive-behavioral counseling administered by health educators, nurses
(Wewers et al., 1994; Griebel et al., 1998; Browning et al., 2000), dentists
(Gritz et al., 1993), physicians (Gritz et al., 1993; Schnoll et al., 2003), or
peers (Emmons et al., 2005). The interpretation of study results is limited
by a variety of factors, however, including low statistical power (Stanislaw
and Wewers, 1994; Wewers et al., 1994; Griebel et al., 1998; Browning
et al., 2000), small sample size (Stanislaw and Wewers, 1994; Wewers et al.,
1994; Griebel et al., 1998), high attrition rates (Gritz et al., 1993), and
lack of long-term follow-up (Stanislaw and Wewers, 1994; Griebel et al.,
1998; Schnoll et al., 2005). Consequently, results overall provide little or
no evidence to support the effectiveness of behaviorally based smoking ces-
sation interventions. Gritz and colleagues (1993) observed no difference in
continuous abstinence rates at 12-month follow-up in patients with head
and neck cancers randomized to receive standard advice to quit or surgeon-
delivered smoking cessation counseling. Another study likewise found that
quit rates did not differ among cancer patients who received standard
smoking cessation counseling and those who received a brief smoking ces-
sation intervention from their physician (Schnoll et al., 2003). In a third
study, childhood cancer survivors randomized to receive peer-delivered
smoking counseling with telephone follow-up were twice as likely to quit
smoking as those who received self-help materials. However, the quit rate
at 12-month follow-up for both groups was relatively modest (15 versus
9 percent), and the incremental cost of the intervention was substantial
($5,371 per additional quit) (Emmons et al., 2005).
Collectively, the available results of intervention trials in cancer popula-
tions, the well-established health risks associated with cancer and its treat-
ment, and the morbidity associated with tobacco use support the need for
more research aimed at developing effective, sustainable tobacco control
interventions for cancer patients that take behavioral, psychological, and
economic factors into account. In the interim, clinicians caring for patients
with a past or present diagnosis of cancer should assess their smoking status
and counsel those who smoke about the increased health risks they incur
in doing so. This recommendation is based on the finding that among the
population at large (i.e., without regard to having a particular diagnosis),
individual face-to-face counseling by a trained therapist or nurse or brief
advice from a physician can be effective in reducing smoking (Lancaster and
Stead, 2004, 2005; Rice and Stead, 2004).

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100 CANCER CARE FOR THE WHOLE PATIENT
Diet and physical activity Diet and physical activity are important health
behaviors that affect the risk of both cancer and cardiovascular disease.
Common health conditions such as overweight/obesity, cardiovascular
disease, and osteopenia/osteoporosis may develop as a primary effect of
specific cancer treatments or as a secondary effect of cancer on functional
status, and dietary interventions offer the potential to reduce such cancer-
related morbidity and promote overall health in vulnerable patients. Dietary
interventions targeting patients with cancer have been evaluated in 11 pro-
spective controlled trials that focused on either weight reduction (de Waard
et al., 1993; Loprinzi et al., 1996; Djuric et al., 2002), fat restriction (Boyar
et al., 1988; Chlebowski et al., 1992; Rose et al., 1993; Kristal et al.,
1997), or specific nutrient intake (Nordevang et al., 1992; Pierce et al.,
1997; Hebert et al., 2001; Pierce et al., 2004). Intervention methods have
involved primarily resource-intensive, individualized counseling sessions de-
livered by trained nutritionists, although some studies have relied on trained
volunteer staff (Kristal et al., 1997) or commercial weight loss programs
such as Weight Watchers (Djuric et al., 2002). In addition to individual-
ized instruction, some interventions have used such approaches as group
sessions or telephone counseling (Pierce et al., 2004). Study results indicate
that these interventions are largely effective in promoting dietary change as
determined by dietary intake (Chlebowski et al., 1992; Nordevang et al.,
1992; Pierce et al., 1997, 2004; Hebert et al., 2001), body weight (Boyar
et al., 1988; Chlebowski et al., 1992; de Waard et al., 1993; Rose et al.,
1993; Loprinzi et al., 1996; Kristal et al., 1997; Hebert et al., 2001; Djuric
et al., 2002), and hormonal status (Boyar et al., 1988; Rose et al., 1993).
Notably, some studies were limited by high attrition rates, which in most
cases were similar among treatment and control participants (Chlebowski
et al., 1992; Kristal et al., 1997; Pierce et al., 1997; Djuric et al., 2002).
Moreover, evidence supporting the sustainability of the positive impact of
interventions beyond 1 year is limited (Chlebowski et al., 1992). Several
ongoing multisite trials are aimed at evaluating maintenance of the effects
of dietary interventions and the relationship to survival outcomes. Pre-
liminary results of the Women’s Intervention Nutrition Study demonstrate
significant reductions in dietary fat and weight in 290 women randomized
to individual dietary instruction versus controls (Chlebowski et al., 1992).
Investigators coordinating the Women’s Healthy Eating and Living Study
Intervention Nutrition Study similarly observed significant increases in in-
take of vegetables, fruits, and fiber that was confirmed by nutrient biomark-
ers among patients with breast cancer randomized to receive individualized
dietary telephone counseling (Pierce et al., 2004). Continued follow-up of
these groups will provide important information about the impact of di-
etary interventions on cancer-free survival.
The benefits of regular physical activity include improvements in

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PSYCHOSOCIAL HEALTH SERVICES 101
physical functioning, cardiorespiratory fitness, strength, flexibility, weight
status, lean muscle mass, mood, and quality of life (McTiernan et al., 1998;
Courneya and Friedenreich, 1999; Pinto and Maruyama, 1999; Courneya,
2003; Fairey et al., 2003; Schwartz, 2004; Knols et al., 2005). A number
of studies of exercise interventions have been conducted among patients
with cancer, with the overall goals of ameliorating cancer-related symptoms
(Winningham and MacVicar, 1988; Courneya et al., 2003b; McKenzie and
Kalda, 2003) and improving physical functioning (MacVicar et al., 1989;
Winningham et al., 1989; Berglund et al., 1994b; Dimeo et al., 1997a,
2003, 2004; Segal et al., 2001; Burnham and Wilcox, 2002; Courneya
et al., 2003a,c; Jones et al., 2004; Fairey et al., 2005; Pinto et al., 2005). Of
these studies, 34 involved randomized or controlled clinical trials that em-
ployed various exercise modalities, including cardiovascular (Winningham
and MacVicar, 1988; MacVicar et al., 1989; Winningham et al., 1989;
Dimeo et al., 1997a, 1998, 2003; Mock et al., 1997, 2001; Schwartz, 1999,
2000; Na et al., 2000; Schwartz et al., 2001; Segal et al., 2001; Courneya
et al., 2003a), resistance (Cunningham et al., 1986; Segal et al., 2003), and/
or flexibility training (Kolden et al., 2002; Adamsen et al., 2003). Exercise
interventions are generally described as “training programs” that vary in
the nature of the training provided. Most are supervised by an exercise
physiologist or similarly trained staff, but some are not. Some are delivered
in a group setting, some are home-based, and some have both components.
Some are described as self-paced.
Outcomes measured for exercise interventions include fatigue, quality
of life, emotional distress, immunological parameters, aerobic capacity, and
muscle strength. The majority of studies have found positive physiological
and psychological outcomes as assessed by levels of fatigue (Mock et al.,
1997; Schwartz, 1999; Mock, 2001; Schwartz et al., 2001; Segal et al.,
2003), quality-of-life and psychological factors (Mock et al., 1997, 2001;
Dimeo et al., 1999; Schwartz, 1999; Segal et al., 2001; Kolden et al., 2002;
Adamsen et al., 2003; Courneya et al., 2003a), immunological parameters
(Dimeo et al., 1997a,b, 2003; Na et al., 2000), aerobic capacity (MacVicar
et al., 1989; Winningham et al., 1989; Dimeo et al., 1997a, 1998, 1999,
2003; Mock et al., 1997, 2001; Schwartz, 1999; Schwartz et al., 2001;
Segal et al., 2001; Kolden et al., 2002; Adamsen et al., 2003; Courneya
et al., 2003a), and muscle strength (Kolden et al., 2002; Adamsen et al.,
2003; Segal et al., 2003). Exercise interventions have been found effective
in improving oxygen capacity, fitness, strength, flexibility, and global health
(MacVicar et al., 1989; Berglund et al., 1994b; Dimeo et al., 1997b; Segal
et al., 2001, 2003; Burnham and Wilcox, 2002; Courneya et al., 2003c;
McKenzie and Kalda, 2003). Several of these investigations observed in-
creased engagement in social activities and reduction in sleep disturbance
in addition to improved physiological outcomes (MacVicar et al., 1989;

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102 CANCER CARE FOR THE WHOLE PATIENT
Berglund et al., 1994b). Anthropometric benefits reported following exer-
cise interventions include positive effects on weight and adiposity as gauged
by waist and hip measurements (Winningham et al., 1989; Burnham and
Wilcox, 2002). One study demonstrated significant improvement in such
biomarkers as blood pressure, heart rate, hemoglobin, and circulating hor-
mone levels in patients with breast cancer participating in a home-based
physical activity intervention (Pinto et al., 2005). Another found a favorable
effect of exercise on biomarkers associated with the metabolic syndrome,
including insulin-like growth factor and insulin-like growth factor-binding
protein 3 (Fairey et al., 2003).
It should be noted, however, that many trials of exercise interventions
had methodological shortcomings, including nonrandom treatment assign-
ments and small sample sizes. Also, patients with breast cancer were the
predominant diagnostic group targeted for study, and the generalizability of
those findings to patients with other cancer diagnoses is not clear. Nonethe-
less, collective results suggest that exercise is associated with many benefits
for the cancer survivor, although a positive impact on survival has not been
established. Future trials are needed to elucidate the optimal type and in-
tensity of exercise for patients with cancer, particularly those with unique
vulnerabilities resulting from cancer-related therapies, such as limb-sparing
surgery or anthracycline chemotherapy. Moreover, because regular physical
activity and healthy dietary practices are both important to weight mainte-
nance, continued follow-up in ongoing trials will be important to determine
the effectiveness of addressing energy balance through multicomponent
behavioral interventions targeting both exercise and dietary modification
(Demark-Wahnefried et al., 2002, 2003a,b; Rock and Demark-Wahnefried,
2002).
Pro�ision of Material and Logistical Resources
Receiving treatment for cancer in medical settings, complying with
prescribed treatments while at home, caring for oneself or a family member,
and performing important family and social roles despite illness require pa-
tients and caregivers to have certain material and logistical resources. These
include transportation, lodging for patients and caregivers when they must
travel long distances for outpatient therapy, child care, wigs and prostheses
(breast, limb, other), and supplies for managing the side effects of cancer
and its treatment (e.g., compression bandages or sleeves for lymphedema
control, ostomy supplies). As noted earlier in this chapter, informal sources
of support can often provide many of these services, such as transportation
or child care. When the service is covered by insurance or a patient has
other financial means, material resources can be purchased. When informal
supports and/or financial resources are limited, however, services are needed

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 10�
from other, formal sources. As noted in Chapter 1, the American Cancer
Society and CancerCare both report that they frequently provide assistance
in securing transportation to health-related appointments, supplies needed
for health care, medical equipment, wigs, and prosthetics.
The effect on health or health care of providing these material and lo-
gistical resources has been the focus of limited research, likely for multiple
reasons. First, as noted earlier in the chapter, some of these services have
such long-standing and wide acceptance as humane services that there has
been little question as to whether they “work.” Transportation, for ex-
ample, has long been acknowledged as a necessary resource for the receipt
of health care, as is evident from its inclusion as a covered service since
the inception of the Medicaid program. Moreover, the provision of many
of these resources poses less physical risk than a new medication or other
clinical treatment, thus attracting less attention as a priority focus for scare
research dollars. Some of these services also have been perceived as “human
services” rather than “health services” because they are not directly curative
or biomedical in intent or origin, and are frequently provided through vol-
untary human services agencies as opposed to health care providers under
third-party reimbursement. In addition, some of these resources may be
perceived as “cosmetic” and thus of lower priority than life-saving medical
treatments (Healey, 2003). When these services have been examined, the
question often has been how to deliver them (often limited in availability)
more efficiently and appropriately and how to prioritize their delivery to
those in greatest need.
Among the sparse research that has sought to determine the effects
on health or health care of providing logistical or material resources, one
study documented that when individuals with cancer lacked transportation,
treatment was foregone (Guidry et al., 1997). And studies of people with a
variety of chronic diseases have found that environmental barriers such as
cost and logistical obstacles interfere with the ability to manage their illness
(Bayliss et al., 2003; Vincze et al., 2004). The absence of research on other
types of support (e.g., use of breast prostheses generally and of different
types) has in itself been identified as adversely affecting the quality of life
of women after surgery for breast cancer (Healey, 2003).
The committee notes that the absence of research is not evidence of an
intervention’s ineffectiveness. Moreover, the frequent provision of many of
these services to patients and families by voluntary agencies (detailed in a
table presented later in this chapter) indicates that these services likely help
patients and their caregivers meet health-related psychosocial needs. The
provision of transportation, supplies, and other logistical and material sup-
port when needed also can logically be assumed to decrease patient distress
and increase the ability of both patients and caregivers to manage illness
and its consequences.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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10� CANCER CARE FOR THE WHOLE PATIENT
Help in Managing Disruptions in Family, School, and Work Life
As described in Chapters 1 and 2, cancer and its treatment and sequelae
can limit the ability of patients and families to perform their usual personal
roles and their roles in the family and the larger society. Unaddressed, these
limitations can lead to emotional and mental health problems for both
patient and family, and the inability to accomplish developmental tasks,
such as attaining educational goals and establishing and maintaining social
relationships, and to perform meaningful work inside and/or outside of the
family. A number of services are aimed at addressing these problems. These
include services to assist patients who are disabled in performing routine
activities of daily living; to assist patients in dealing with cognitive impair-
ments and educational difficulties; to support families and other caregivers
in dealing with the emotional, physical, and other stresses of caregiving;
and to provide patients and their families with legal protections afforded
by such laws as the Americans with Disabilities Act and the Family and
Medical Leave Act. As is true for the services described above, evidence in
support of the effectiveness of these services varies.
Assistance with activities of daily living Personal care services (e.g., ser-
vices to help patients bathe, dress, use the toilet, and groom themselves),
as well as homemaker and chore services, are designed to help compensate
for temporary or permanent inability to perform these tasks due to fatigue,
pain, or loss of function. These services are often provided by families and
other sources of informal support (Hayman et al., 2001) and, as with the
material and logistical resources described above, are often available to
some extent as well through the Medicaid and Medicare programs, the
Older Americans Act, and free-standing home health agencies reimbursed
through third-party insurers or out-of-pocket purchase by consumers. Also
as with the provision of material and logistical resources, these services
have long-standing and wide acceptance, and the committee did not review
evidence for their effectiveness.
Cognitive and educational assistance As described in Chapter 1, cognitive
impairment—manifest, for example, in a decreased ability to pay attention
and concentrate, short-term memory loss, diminished language ability, de-
creased information processing speed, and diminished visual–motor integra-
tion and spatial abilities—has been well documented in children and adults
treated for cancer (Anderson-Hanley et al., 2003; IOM and NRC, 2003;
Matsuda et al., 2005; Stewart et al., 2006). The nature of this impairment
may differ depending on the patient, the type of cancer, and the treatment
regimen. Cognitive impairment associated with treatment for breast cancer,
for example, appears to occur in fewer than half of patients and is mild and

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 10�
transient, although when present, it may take years to resolve (Matsuda
et al., 2005). On the other hand, the cognitive impairment associated with
brain tumors and acute lymphoblastic leukemia (the most common child-
hood cancers) appears to be more severe and persistent, likely because of
the radiation and chemotherapy specifically targeting the central nervous
system that are part of the treatment protocols for these cancers and the
more vulnerable condition of the rapidly developing brains of children.
Very little research has tested approaches to reducing the cognitive
impairment associated with treatment for cancer8 in adults (McDougall,
2001). There is a need for well-designed longitudinal studies with baseline
and ongoing measures of cognitive impairment using objective and sensitive
measurement tools and approaches. These studies should also control for
an array of confounding variables, such as depression, age, hormonal levels,
and other treatments. Such studies would facilitate better understanding of
the mechanisms, types, and severity and duration of cognitive impairment
in adults, an essential precursor to the development of effective prevention,
treatment, and rehabilitation interventions (Anderson-Hanley et al., 2003;
Matsuda et al., 2005).
The development of services to address cognitive impairment in chil-
dren has progressed somewhat further, and there is some early theoretical
and empirical support for cognitive remediation, ecological or environmen-
tal interventions, and pharmacotherapy. Cognitive remediation involves
identifying the patient’s specific cognitive deficits and then implementing
interventions to help reduce these deficits and enable the patient to relearn
through retraining and practicing salient cognitive tasks. Ecological or en-
vironmental interventions involve modifying the learning context and the
methods used by the individual to acquire information and demonstrate
knowledge. In school settings, for example, this could involve providing
preferential seating, allowing additional time to take examinations, using
true/false and multiple-choice tests rather than essay questions, and provid-
ing written handouts rather than requiring a child to copy material from
the board (Butler and Mulhern, 2005). With respect to pharmacotherapy,
methylphenidate, a medication used to treat children with attention-deficit
disorder has shown some slight but encouraging preliminary results in chil-
dren with cancer (Mulhern et al., 2004). Much more research is needed be-
fore interventions with quantified efficacy can be identified. In the interim,
ecological interventions are unlikely to present significant risks to children
and should be pursued; they can be included as part of school re-entry
or reintegration programs, but these programs as yet have not been well
8 In contrast, more research evidence exists for the effectiveness of cognitive rehabilitation in
individuals with cognitive impairment due to stroke and traumatic brain injury, which is more
clearly mapped and better understood (see Cicerone et al., 2005, and Tate et al., 2006).

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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10� CANCER CARE FOR THE WHOLE PATIENT
studied (Prevatt et al., 2000). Cognitive testing should also be undertaken
to help identify areas in need of remediation.
Family and caregiver support Because of the importance of caregivers as
a source of social support to patients and the threats to their health posed
by the physical, emotional, and other stresses associated with caregiving, a
variety of services have been developed to support them in this role and to
relieve some of their stress. These include provision of education about the
illness and how to respond effectively to illness-related problems, caregiver
support groups that provide emotional support and information, initiatives
to increase patients’ competence in providing self-care, psychotherapy, re-
spite care services, and combinations of some of these services (Sorensen
et al., 2002). Two systematic literature reviews of such interventions gen-
erally yielded mixed and nonsignificant findings. These reviews encompass
a relatively small number of studies (with typically small sample sizes)
involving various types of interventions, including stress and activity man-
agement programs, problem-solving interventions, and telephone counsel-
ing, and measuring a variety of outcomes. Some studies found improved
coping and confidence (Kotkamp-Mothes et al., 2005) or reduced distress
or increased satisfaction for caregivers (Harding and Higginson, 2003).
Positive results were most likely for self-reported improvement in coping
skills and knowledge.
A review of additional individual studies found varied and overall
weak results on an array of outcomes. Psychoeducational interventions
showed a positive impact on caregiver stress and problem solving (Bucher
et al., 2001; Manne et al., 2004) that was statistically significant only
for studies with larger populations (e.g., Pasacreta and McCorkle, 2000).
Similarly, caregivers in studies that focused on problem-solving and educa-
tional interventions reported improved confidence in problem solving, but
the study designs limit generalizability because of either nonrandomization
of subjects or problems with selective attrition from studies. Studies using
psychobehavioral interventions have shown modest impacts on selected
variables, such as caregiver response to symptoms (Given et al., 2006).
There is some evidence for the effectiveness of interventions target-
ing caregivers of patients without regard to cancer diagnosis. Although in
general it appears that the provision of information alone has little or no
impact on most behaviors and outcomes (Bhogal et al., 2003; Forster et al.,
2006), education in combination with other interventions (e.g., support
groups or counseling) has shown modest effects on outcomes such as care-
givers’ self-reported comfort or stress reduction. Combination programs in-
cluding such services as behavioral interventions, nursing care, and exercise
also have been shown to have modest effects on some outcome variables
(Roberts et al., 2000; Bennet, 2002; Sorensen et al., 2002). Combination

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 10�
programs for elders with dementia, including respite, psychoeducation,
counseling, and emotional support, have resulted in increased caregiver
satisfaction and in some studies, delayed institutionalization (Knight et al.,
1993; McNally et al., 1999; Gitlin et al., 2003). On the other hand, two
studies found that respite care for caregivers of patients with Alzheimer’s
disease did not result in reduced stress and burden of lasting duration for
caregivers (McNally et al., 1999; Lee and Cameron, 2006). The generaliz-
ability of these findings to interventions targeting cancer patients is unclear;
a meta-analysis of a variety of caregiver support interventions found that
caregivers of patients with dementia benefited less from such intervention
than did others (Sorensen et al., 2002).
Overall, it appears that these types of educational, problem-solving,
and supportive interventions can improve some aspects of caregiver satis-
faction or self-reported sense of mastery, but few have shown actual im-
provements in problem-solving abilities, pain management, or other more
objective measures of reduced caregiver burden. This body of work suffers
from the failure to use standardized outcome measures, limited randomiza-
tion of patients and caregivers to intervention groups, lack of longitudinal
designs that would allow for measurement of longer-term effects, and
analysis that fails to control for selective attrition. Nevertheless, the key
role caregivers play in delivering essential social support and providing
hands-on health care and logistical support to patients clearly points to the
need for oncology providers to assess caregivers’ capabilities and stresses
and work jointly with them and patients to identify and secure resources
likely to be helpful in the caregiving role. As more research on support for
caregivers is conducted, clinicians will have better insights into how best to
provide such support.
Legal protections and services Help in obtaining protections and rights
such as those afforded by the Americans with Disabilities Act, the Family
and Medical Leave Act, and the Individuals with Disabilities Education
Act can help prevent or ameliorate disruptions in family, school, and work
life. Legal instruments such as power of attorney, legal guardianship for
minors, mechanisms for disposition of assets, and legal representation in
other matters are also important (Fleishman et al., 2006). Although legal
service is another area in which there is scarce research on effectiveness, the
New York Legal Assistance Group, a nonprofit organization offering free
civil legal services to poor and near-poor individuals and families living in
New York City, examined the impact of legal services on the lives of 51 of
its clients with cancer.9 In response to a survey, these clients reported that
9 As of 2005, the New York Legal Assistance Group had provided legal services to more than
500 individuals with cancer (Fleishman et al., 2006).

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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10� CANCER CARE FOR THE WHOLE PATIENT
receipt of legal services reduced their worries (83 percent), improved their
financial situation (51 percent), positively affected their family and loved
ones (33 percent), helped them follow their treatment regimen (23 percent),
and enabled them to keep medical appointments (22 percent) (Retkin et al.,
2007).
Help in Managing Financial Demands and Insurance
As described in Chapter 1, cancer imposes substantial financial burdens.
A number of services are aimed at relieving these burdens, including finan-
cial planning or counseling, insurance counseling (e.g., health, disability),
other benefits eligibility assessment/counseling (e.g., Supplemental Security
Income, Social Security Disability Income), help in managing day-to-day
financial activities such as bill paying, and sometimes monetary awards.
Once again, research on the effects of these services is limited, but nonprofit
organizations such as the American Cancer Society and CancerCare report
that help with financial and insurance problems is a frequently needed
and provided service. The New York Legal Assistance Group also reports
helping cancer patients arrange debt repayment with their creditors; secure
benefits from federal financial assistance programs such as food stamps,
Social Security Disability Income, Supplemental Security Income, and long-
or short-term disability programs; and secure other insurance benefits.
Clients with cancer who received these financial services cited significantly
improved financial circumstances, reporting, for example, that receipt of
these services “made me able to live with a roof over my head and food to
eat” (Retkin et al., 2007:7).
READY AVAILABILITY OF KEY SERVICES
As described in Chapter 1, patients vary in the extent to which they
need the psychosocial health services described in this chapter. Given the
evidence described in Chapter 2, failing to address these needs can adversely
affect the health and health care of patients. Thus all oncology providers
should identify patients with psychosocial needs and take steps to ensure
that they receive the services necessary to address them.
Psychosocial health services are provided by multiple sectors of the
U.S. economy through different types of providers (see Table 6-3, Some
A�ailability of Psychosocial Ser�ices in Health and Human Ser�ices Sectors
and from Informal Supports, in Chapter 6). Depending on each patient’s
situation (e.g., geographic location, financial resources, health insurance
status), some services are more accessible than others. For example, a
shortage of mental health professionals with specific types of training (e.g.,
in child mental health) is a long-recognized problem in certain parts of the

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
PSYCHOSOCIAL HEALTH SERVICES 10�
country, especially in rural and other geographically remote areas (IOM,
2006). However, the committee found the ready and nationwide a�ailability
of a number of key psychosocial health ser�ices to patients with cancer.
Table 3-2 highlights information services and Table 3-3 other key psychoso-
cial health services available nationwide at no cost to patients. Information
such as this may be helpful to cancer care providers as they seek to provide
their patients with information on sources of psychosocial health services.
The next two chapters address how such providers can identify patients
with psychosocial problems and help them receive the psychosocial health
services they need.
TABLE 3-2 Selecteda Nationwide Sources of Free Patient Information on
Cancer and Cancer-Related Services
Program Information Available On How to Access
American
Cancer Society
(ACS) Cancer
Reference
Information
Specific cancers, treatment, and
psychosocial services
www.cancer.org/docroot/
cri/cri_0.asp
1-800-ACS-2345 (toll free)
American
Institute of
Cancer Research
Nutrition, diet, and exercise to
combat cancer
www.aicr.org
1-800-843-8114 (toll free)
Its online Nutrition Hotline
allows survivors to e-mail
a personal nutrition and
diet question to a registered
dietician
Asian and
Pacific Islander
National Cancer
Survivors
Network
Information on where to obtain
psychosocial services, and
languages spoken by sources of
the services
www.apiahf.com/devsearch/
report.asp
Association of
Cancer Online
Resources
Types of cancer, treatment options,
clinical trials, and locating support
groups
www.acor.org
Bladder Cancer
Advocacy
Network
Bladder cancer, other
organizations with information
on bladder cancer and that offer
support services, finding clinical
trials
www.bcan.org
1-888-901-BCAN (toll free)
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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110 CANCER CARE FOR THE WHOLE PATIENT
Program Information Available On How to Access
Bloch Cancer
Foundation
Sources of information about
cancer, treatments, and fighting
cancer
www.blochcancer.org
1-800-433-0464 (toll free)
Brain Tumor
Society
General overview of brain tumors
(symptoms, diagnosis, pathology,
subtypes of brain tumors) and
information on treatment options;
complementary and alternative
medicine; and finding brain tumor
centers, financial and insurance
resources, and support groups
www.tbts.org
1-800-770-8287 (toll free)
C3: Colorectal
Cancer
Coalition
Diagnosis, treatment options,
dealing with side effects, and
support services and resources
www.fightcolorectalcancer.org
Cancer Research
and Prevention
Foundation
General overview of various types
of cancer, treatment options, and
emerging therapies
www.preventcancer.org
1-800-227-2732 (toll free)
CancerCare Diagnoses, treatment types, and
multiple psychosocial support
services
www.cancercare.org
1-800-813-HOPE (toll free)
Candlelighters
Childhood
Cancer
Foundation
Treatments, finding support
groups, financial assistance,
cancer-related news, and where to
find treatment clinics
www.candlelighters.org
1-800-366-2223 (toll free)
Colon Cancer
Alliance
Colorectal rectal cancer, treatment,
clinical trials, finding support
services
www.ccalliance.org
1-877-422-2030 (toll free)
Colorectal
Cancer Network
Colorectal cancer, treatment
options, clinical trials, and finding
treatment centers and support
www.colorectal-cancer.net
CureSearch Information on childhood cancers,
treatments, side effects, hospitals,
and clinical trials
Provides a directory of national
and local support services
www.curesearch.org
1-800-458-6223 (toll free)
Facing Our
Risk for Cancer
Empowerment
(Breast Cancer)
Telephone hotline matching
patients to peer counselors and
information about breast cancer
www.facingourrisk.org
1-866-824-7475 (toll free)
TABLE 3-2 Continued

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 111
Program Information Available On How to Access
fertileHope Reproductive aspects of cancer
and cancer treatment, parenthood
options for persons at risk for
infertility, clinical trials
Finding doctors/clinics specializing
in fertility treatments
Locating support services
www.fertilehope.org
1-888-994-4673 (toll free)
info@fertilehope.org
International
Association of
Laryngectomees
Locating a speech therapist or
pathologist by state
Directory of laryngectomee
suppliers
www.larynxlink.com
International
Myeloma
Foundation
Myeloma, treatment options,
managing side effects of treatment
and myeloma symptoms, finding
clinical trials, locating support
groups
www.myeloma.org
Telephone hotline: Toll free at
1-800-452-CURE or
1-800-452-2873,
9:00 am–4:00 pm PST
Contact via email: TheIMF@
myeloma.org
Kidney Cancer
Association
Kidney cancer, types of surgical
treatment, therapies for advanced
kidney cancer, finding clinical
trials, finding support groups,
other cancer organizations,
information on patient
self-empowerment
Message board containing
information on nutrition, diet,
health insurance, financial
resources
www.akca.us
www.nkca.org
Nurse hotline: 1-866-400-5151
(toll free), Monday-Friday,
9:00 am–4:00 pm PST
Lance
Armstrong
Foundation
Different types of cancer and their
treatments; physical, practical, and
emotional concerns; clinical trials;
and resource directories
www.livestrong.org
One-on-one help: 1-866-235-
7205 (toll free)
TABLE 3-2 Continued
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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112 CANCER CARE FOR THE WHOLE PATIENT
Program Information Available On How to Access
The Leukemia
and Lymphoma
Society
Information on leukemia,
lymphoma, and other blood
cancers; finding support groups;
developments in treatments;
decision-support tools; and clinical
trial updates
Online chat with information
specialist:
www.leukemia-lymphoma.org;
Monday-Friday, 10:00 am-
5:00 pm ET
Telephone inquiries
(Information Resource Center
[IRC]): 1-800-955-4572,
Monday-Friday, 9:00 am-
6:00 pm EST. IRC information
specialists are social workers,
nurses, and health educators
Look Good . . .
Feel Better
Program
Appearance-related/cosmetic tips;
e.g., skin care and make-up; hair
care; hair loss; wig choice, styling,
and care
Locating a Look Good Feel Better
Program in patients’ areas
www.lookgoodfeelbetter.org
1-800-395-LOOK phone access
24 hours/day, 7 days/week, in
English, Spanish, and other
languages (toll free)
Lung Cancer
Alliance
Lung cancer, treatment options,
clinical trials, finding support
groups, other resources
www.lungcanceralliance.org
Hotline: 1-800-298-2436
(toll free)
The Lustgarten
Foundation
for Pancreatic
Cancer Research
Pancreatic cancer and treatment
Patient And Caregiver Education
(PACE) program assists
individuals to access information
and support resources they need
to make informed decisions
PACE is staffed by a full-
time, licensed social worker,
who addresses patient
inquiries, conducts searches
for individualized information
and clinical trials, and provides
referrals as needed
www.lustgartenfoundation.org
1-866-789-1000 (toll free)
Lymphoma
Foundation of
America
Finding lymphoma specialists
How to get a second opinion
www.lymphomahelp.org
1-800-385-1060 (toll free)
TABLE 3-2 Continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 11�
Program Information Available On How to Access
Lymphoma
Research
Foundation
Different types of lymphoma,
treatment options, clinical trials,
and finding peer support
www.lymphoma.org
Helpline: 1-800-500-9976
(toll free),
helpline@lymphoma.org
Melanoma
Research
Foundation
Melanoma, tests, and questions to
ask patient’s doctor
List of melanoma centers by
region
www.melanoma.org
1-800-MRF-1290 (toll free)
Multiple
Myeloma
Research
Foundation
Information on symptoms,
diagnosis, prognosis, and stages;
finding support groups; treatment
options; matching clinical trials
www.multiplemyeloma.org
Information on clinical trials:
Speak with a clinical trial
specialist at 1-800-506-9044.
Available Monday-Friday,
8:30 am-6:00 pm ET
Locating clinical trials online:
www.multiplemyeloma.org/
clinical_trials/4.09.php
National Cancer
Institute (NCI)
Different types of cancers;
treatments; strategies for coping
with fatigue, pain, emotional
concerns; and clinical trials
Information specialists are
available to answer a range of
questions in “real time” about
cancer including most recent
treatment advances and can
take as much time as needed
for thorough and personalized
responses
www.cancer.gov
Telephone inquiries: 1-800-4-
CANCER (1-800-422-6237)
TTY: 1-800-332-8615
Monday-Friday, 9:00 am–4:30
pm local time (toll free)
Online web inquiries via:
https://cissecure.nci.nih.gov/
livehelp/welcome.asp
Email inquiries via:
cancergovstaff@mail.nih.gov
TABLE 3-2 Continued
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
11� CANCER CARE FOR THE WHOLE PATIENT
Program Information Available On How to Access
National
Coalition
for Cancer
Survivorship
Online publications on types of
health insurance and coverage;
employment rights; advice on
communicating with your doctor
Information on palliative care
and symptom management,
diet/nutrition, clinical trials,
importance of exercise
Finding cancer centers; support
groups; other cancer organizations
www.canceradvocacy.org
To order hard copies of
publications, call toll-free
at 1-877-NCCS-YES or
1-877-622-7937
National
Lung Cancer
Partnership
General information about lung
cancer and resources to help
navigate the challenges posed by
lung cancer, including information
on clinical trials and support
services
www.
nationallungcancerpartnership.
org
National
Lymphedema
Network
Lymphedema, causes, symptoms,
and treatment
Treatment centers, suppliers,
and manual lymphatic drainage
therapists
Finding emotional support groups,
penpals, and netpals
www.lymphnet.org
1-800-541-3259 (toll free)
National
Ovarian Cancer
Coalition
(NOCC)
Ovarian cancer and clinical trials
Finding NOCC state chapters for
support and educational programs
Database for finding gynecologic
oncologists
www.ovarian.org
1-888-OVARIAN (toll free)
National
Prostate Cancer
Coalition
General facts and information
about prostate cancer; screening;
risk factors; staging; side effects;
information on diet/nutrition;
treatment options
www.fightprostatecancer.org
Needy Meds Programs that help with the cost
of medicine and other health care
expenses
www.needymeds.com
TABLE 3-2 Continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
PSYCHOSOCIAL HEALTH SERVICES 11�
Program Information Available On How to Access
North American
Brain Tumor
Coalition
Brain tumor facts, public policy
issues affecting brain tumor health
care
www.nabraintumor.org
The Oral
Cancer
Foundation
Oral cancer, treatment,
rehabilitation, dental issues, and
emotional issues
www.oralcancerfoundation.org
Ovarian Cancer
National
Alliance
Ovarian cancer, symptoms,
stages, diagnosis, approaches to
treatment, and finding a clinical
trial
www.ovariancancer.org
1-866-399-6262 (toll free)
ocna@ovariancancer.org
Pancreatic
Cancer Action
Network
(PanCAN)
Types of pancreatic cancer,
treatment options, side effects
of treatment, diet and nutrition,
pancreatic cancer specialists
and cancer centers, clinical
trials, location of educational
symposiums in the United States
about pancreatic cancer
Offers Patient and Liaison Services
(PALS), a comprehensive, call-in
information program for patients,
families, and health professionals
www.pancan.org
1-877-272-6226 (toll free)
Email pals@pancan.org to
connect with a PALS Associate
Monday-Friday, 8:00 am-
5:00 pm PST
People Living
With Cancer
(sponsored by
the American
Society of
Clinical
Oncology
(ASCO))
Cancer, types of cancer, diagnosis,
finding an oncologist, treatment,
coping, managing side effects,
survivorship, clinical trials
Finding emotional support
services, financial assistance,
treatment
www.plwc.org
1-888-651-3038 (toll free)
contactus@plwc.org
help@plwc.org
privacy@plwc.org
Planet Cancer
(targeted to
young adults
with cancer)
Practical advice on dealing with
side effects and coping with
cancer, news/articles on cancer
research
www.planetcancer.org
contactus@planetcancer.org
Prostate Cancer
Foundation
Prostate cancer, treatment options,
side effects, nutrition, and other
lifestyle practices to improve
health
www.prostatecancerfoundation.
org
1-800-757-2873 (toll free)
info@prostatecancerfoundation.
org
TABLE 3-2 Continued
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
11� CANCER CARE FOR THE WHOLE PATIENT
Program Information Available On How to Access
Sarcoma
Foundation of
America
Types of sarcomas, symptoms,
diagnosis; treatment options; links
to other sarcoma organizations;
information on clinical trials
www.curesarcoma.org
Shop Well With
You
Customized clothing tips arranged
by cancer-related treatments and
side-effects
Directory of cancer-specific
products such as swimsuits and
head coverings and where items
can be located
Guidance on how to use clothing
and accessories to maintain a
positive body-image during and
after treatment
Articles and books on body-image,
clothing, cancer, and wellness
www.shopwellwithyou.org
The Skin
Cancer
Foundation
Various types of skin cancer,
treatment, and health care after
treatment
Finding a skin cancer physician
www.skincancer.org
1-800-754-6490 (toll free)
info@skincancer.org
Support for
People with
Oral and Head
and Neck
Cancer
Oral, head, and neck cancers;
and treatments, clinical trials,
rehabilitation and resources to
improve or manage symptoms of
cancer or its treatment
Developments in treating head and
neck cancer
www.spohnc.org
1-800-377-0928 (toll free)
info@spohnc.org
Susan G.
Komen for the
Cure
Breast cancer, treatment, care after
treatment, support services, and
research
www.komen.org
1-800-462-9273 (toll free)
The Testicular
Cancer
Resource Center
Testicular cancer, treatment,
clinical follow-up after treatment,
coping, experts in testicular
cancer, and life after treatment
http://tcrc.acor.org
Email questions: dougbank@
alum.mit.edu
TABLE 3-2 Continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
PSYCHOSOCIAL HEALTH SERVICES 11�
Program Information Available On How to Access
Thyroid Cancer
Survivors’
Association, Inc.
Thyroid cancer, treatment,
nutrition and diet, finding a
specialist and support groups
www.thyca.org
1-877-588-7904 (toll free)
thyca@thyca.org
US Too
(Prostate
Cancer)
Prostate cancer, treatment options,
post-treatment issues, clinical
trials
www.ustoo.org
Hotline: 1-800-808-7866
(toll free)
Women’s Cancer
Network
Various types of cancers,
treatment, symptom management,
care issues affecting women with
cancer, clinical trials, and finding
an oncologist
www.wcn.org
1-800-444-4441 (toll free)
Y-ME National
Breast Cancer
Organization,
Inc.
Breast cancer, treatment, side
effects, clinical trials, coping, and
quality of life issues
Brochures by mail (English and
Spanish)
www.y-me.org
24-hour, toll-free, national
hotline staffed by trained
survivors:
1-800-221-2141 (English)
1-800-986-9505 (Spanish)
Interpreters available for 150
languages
Free, monthly, 1-hour
teleconferences on breast cancer
issues with presentation by a
medical professional followed
by a question and answer
session
a The committee recognizes that there are many more organizations that provide free infor-
mation services to cancer patients, and regrets the inability to acknowledge all of them in this
report. The organizations included here are intended to illustrate the breadth of information
services available at no cost to patients and should not be viewed as a complete list.
TABLE 3-2 Continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
11�
T
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m
o
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th

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
11�
T
A
B
L
E
3
-3
S
el
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te
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sy
ch
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s
(O
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gr
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In
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ro
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p
at
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(t
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su
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In
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ak
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te
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c.
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rg
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(
to
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In
a
ll
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st
at
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T
h
re
e
la
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e
co
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n
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al
ly
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ec
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n

su
p
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rt
P
an
cr
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ti
c
C
an
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r
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ct
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n

N
et
w
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rk

(P
an
cr
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c
C
an
ce
r)
D
ec
is
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n
s
u
p
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—
in
fo
rm
at
io
n

fr
o
m
t
ra
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ed
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ro
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ss
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al
v
ia

te
le
p
h
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r
e-
m
ai
l
w
w
w
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an
ca
n
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rg
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7
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7
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2
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6
(
to
ll
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re
e)
In
a
ll
5
0

st
at
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In
2
0
0
6
,
p
ro
vi
d
ed
d
ec
is
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n
s
u
p
p
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rt
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o

6
,6
5
5
p
eo
p
le
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ia
e
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ai
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le
p
h
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E
d
u
ca
ti
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n
A
C
S’
I
C
an
C
o
p
e
P
ro
gr
am
C
o
m
m
u
n
it
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o
r
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n
li
n
e
cl
as
se
s
o
n

ca
n
ce
r
m
an
ag
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en
t,
t
re
at
m
en
t,

fi
n
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ci
al
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rn
s,
c
o
m
m
u
n
it
y
re
so
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rc
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,
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tr
it
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n
,
em
o
ti
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al

m
at
te
rs
,
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d
c
o
m
m
u
n
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at
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n

sk
il
ls
w
w
w
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rg
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cr
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SN
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n
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SN
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X
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C
an
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o
p
e.
as
p
1
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0
0
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C
S-
2
3
4
5

(t
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ll
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e)
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d
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S’
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o
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d
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.
F
ee
l
B
et
te
r
P
ro
gr
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m
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ro
u
p
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o
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e
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ro
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am

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ro
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ip
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co
sm
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p

p
at
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ts
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p
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it
h
s
k
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h
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ge
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ai
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f
ca
n
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tr
ea
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t
w
w
w
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go
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fe
el
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et
te
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rg
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-8
0
0
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9
5
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O
O
K

(t
o
ll
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re
e)
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d
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ca
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m
er
ic
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n
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it
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te
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r
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es
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rc
h
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d
vi
ce
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n
d
i
n
fo
rm
at
io
n
o
n

h
ea
lt
h
q
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es
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n
s
an
d
n
u
tr
it
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n

an
sw
er
ed
b
y
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d
ie
ti
ti
an
w
w
w
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ic
r.
o
rg
1
-8
0
0
-8
4
3
-8
1
1
4
(
to
ll
f
re
e)
In
a
ll
5
0

st
at
es
P
h
o
n
e
ad
vi
ce
t
o
a
p
p
ro
x
im
at
el
y
3
5

ca
ll
er
s/
m
o
n
th
A
p
p
ro
x
im
at
el
y
1
0
0
e
m
ai
l
re
sp
o
n
se
s
p
er

m
o
n
th
co
n
ti
n
u
ed

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
120
P
sy
ch
o
so
ci
al

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
d
u
ca
ti
o
n
B
la
d
d
er
C
an
ce
r
A
d
vo
ca
cy

N
et
w
o
rk

(B
la
d
d
er
C
an
ce
r)
T
el
ep
h
o
n
e
w
o
rk
sh
o
p
s
w
w
w
.b
ca
n
.o
rg
In
a
ll
5
0

st
at
es
E
d
u
ca
ti
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n
B
ra
in
T
u
m
o
r
So
ci
et
y
(B
T
S)
O
n
e-
d
ay
s
em
in
ar
s,
a
n
n
u
al

co
n
fe
re
n
ce
s,
a
n
d
s
ym
p
o
si
u
m
w
w
w
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b
ts
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rg
3
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n
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ay

se
m
in
ar
s
in
3

U
.S
.
ci
ti
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ve
ra
ge
s
ap
p
ro
x
im
at
el
y
1
0
0
p
eo
p
le
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t
ea
ch

se
m
in
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E
d
u
ca
ti
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n
C
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rC
ar
e
E
d
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ca
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n
—
ca
n
ce
r
ty
p
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,
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ea
tm
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q
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fe

co
n
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rn
s
w
w
w
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ar
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rg
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3
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P
E

(t
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ll
f
re
e)
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a
ll
5
0

st
at
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4
2
,6
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fr
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m
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ll
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0
s
ta
te
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ed
c
o
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li
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e
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su
p
p
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rt

gr
o
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p
,
re
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rr
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r
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n

F
Y
2
0
0
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(
u
n
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p
li
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t)
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in
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p
at
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n
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sh
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E
d
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G
il
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W
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o
p
s
to

ca
n
ce
r
p
at
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ts
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n
d
t
h
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r
fa
m
il
ie
s
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n
h
o
w
t
o
l
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e
w
it
h
c
an
ce
r.

T
o
p
ic
s
in
cl
u
d
e
st
re
ss
r
ed
u
ct
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n
,
n
u
tr
it
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n
,
an
d
p
ra
ct
ic
al
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ss
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es
w
w
w
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il
d
as
cl
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b
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rg
1
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8
8
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IL
D
A
-4
-U

(t
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ll
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re
e)
F
re
es
ta
n
d
in
g
G
il
d
a’
s
C
lu
b
s
in
1
9
c
it
ie
s
in
t
h
e
U
n
it
ed

St
at
es
In
2
0
0
6
,
1
7
2
,0
0
0
m
em
b
er
v
is
it
s
to
G
il
d
a’
s
C
lu
b
s
ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
(n
o
t
in
cl
u
d
in
g
gu
es
ts
a
n
d
v
is
it
o
rs
)
E
d
u
ca
ti
o
n
In
te
rn
at
io
n
al
M
ye
lo
m
a
F
o
u
n
d
at
io
n
(
IM
F
)
Se
m
in
ar
s
an
d
s
ym
p
o
si
a
fo
r
p
at
ie
n
ts
a
n
d
f
am
il
ie
s
o
n
t
o
p
ic
s
in
cl
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m
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ag
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d
e
ef
fe
ct
s,

b
ec
o
m
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g
a
b
et
te
r
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at
ie
n
t,
a
n
d

u
n
d
er
st
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d
in
g
la
b
r
es
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lt
s
w
w
w
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ye
lo
m
a.
o
rg
1
-8
0
0
-4
5
2
-2
8
7
3
(
to
ll
f
re
e)
4
–6
s
em
in
ar
s/

sy
m
p
o
si
a
ye
ar
ly
i
n

d
if
fe
re
n
t
re
gi
o
n
s
o
f
th
e
U
n
it
ed
S
ta
te
s
A
p
p
ro
x
im
at
el
y
2
0
0
–2
5
0
p
eo
p
le
a
tt
en
d

ea
ch
s
em
in
ar
/s
ym
p
o
si
a
ea
ch
y
ea
r
E
d
u
ca
ti
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n
K
id
n
ey
C
an
ce
r
A
ss
o
ci
at
io
n
P
at
ie
n
t/
su
rv
iv
o
r
co
n
fe
re
n
ce
o
n

to
p
ic
s
in
cl
u
d
in
g
k
id
n
ey
c
an
ce
r
p
at
h
o
lo
gy
a
n
d
t
yp
es
o
f
tr
ea
tm
en
t
an
d
t
h
er
ap
y
w
w
w
.n
k
ca
.o
rg
2
–3
p
at
ie
n
t/
su
rv
iv
o
r
co
n
fe
re
n
ce
s
in
t
h
e
U
n
it
ed

St
at
es

ye
ar
ly
;
th
re
e
co
n
fe
re
n
ce
s
w
il
l
b
e
h
el
d
i
n

2
0
0
7
9
5
p
eo
p
le
r
eg
is
te
re
d
f
o
r
Ja
n
u
ar
y
2
0
0
7

P
at
ie
n
t/
Su
rv
iv
o
r
C
o
n
fe
re
n
ce
E
d
u
ca
ti
o
n
T
h
e
L
eu
k
em
ia
a
n
d
L
ym
p
h
o
m
a
So
ci
et
y
P
ro
vi
d
es
e
d
u
ca
ti
o
n
a
n
d

in
fo
rm
at
io
n
t
ar
ge
te
d
t
o
p
at
ie
n
ts
,
su
rv
iv
o
rs
,
an
d
c
ar
eg
iv
er
s.
T
o
p
ic
s
in
cl
u
d
e
tr
ea
tm
en
t
o
p
ti
o
n
s
an
d

h
o
w
t
o
s
tr
en
gt
h
en
c
o
p
in
g
an
d

d
ec
is
io
n
-m
ak
in
g
sk
il
ls
w
w
w
.l
eu
k
em
ia
–
ly
m
p
h
o
m
a.
o
rg
C
h
ap
te
rs
i
n

al
l
5
0
s
ta
te
s
T
A
B
L
E
3
-3
C
o
n
ti
n
u
ed

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
121
P
sy
ch
o
so
ci
al

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
d
u
ca
ti
o
n
B
la
d
d
er
C
an
ce
r
A
d
vo
ca
cy

N
et
w
o
rk

(B
la
d
d
er
C
an
ce
r)
T
el
ep
h
o
n
e
w
o
rk
sh
o
p
s
w
w
w
.b
ca
n
.o
rg
In
a
ll
5
0

st
at
es
E
d
u
ca
ti
o
n
B
ra
in
T
u
m
o
r
So
ci
et
y
(B
T
S)
O
n
e-
d
ay
s
em
in
ar
s,
a
n
n
u
al

co
n
fe
re
n
ce
s,
a
n
d
s
ym
p
o
si
u
m
w
w
w
.t
b
ts
.o
rg
3
o
n
e-
d
ay

se
m
in
ar
s
in
3

U
.S
.
ci
ti
es
A
ve
ra
ge
s
ap
p
ro
x
im
at
el
y
1
0
0
p
eo
p
le
a
t
ea
ch

se
m
in
ar
E
d
u
ca
ti
o
n
C
an
ce
rC
ar
e
E
d
u
ca
ti
o
n
—
ca
n
ce
r
ty
p
es
,
tr
ea
tm
en
t
o
p
ti
o
n
s,
q
u
al
it
y-
o
f-
li
fe

co
n
ce
rn
s
w
w
w
.c
an
ce
rc
ar
e.
o
rg
1
-8
0
0
-8
1
3
-H
O
P
E

(t
o
ll
f
re
e)
In
a
ll
5
0

st
at
es
4
2
,6
8
0
i
n
d
iv
id
u
al
s
fr
o
m
a
ll
5
0
s
ta
te
s
re
ce
iv
ed
c
o
u
n
se
li
n
g,
e
d
u
ca
ti
o
n
,
su
p
p
o
rt

gr
o
u
p
,
re
fe
rr
al
o
r
fi
n
an
ci
al
a
ss
is
ta
n
ce
i
n

F
Y
2
0
0
5
(
u
n
d
u
p
li
ca
te
d
c
o
u
n
t)
A
n
a
d
d
it
io
n
al
4
5
,3
0
0
u
n
d
u
p
li
ca
te
d

in
d
iv
id
u
al
s
p
ar
ti
ci
p
at
ed
i
n
t
el
ep
h
o
n
e
ed
u
ca
ti
o
n
w
o
rk
sh
o
p
s
E
d
u
ca
ti
o
n
G
il
d
a’
s
C
lu
b
W
o
rl
d
w
id
e
L
ec
tu
re
s
an
d
w
o
rk
sh
o
p
s
to

ca
n
ce
r
p
at
ie
n
ts
a
n
d
t
h
ei
r
fa
m
il
ie
s
o
n
h
o
w
t
o
l
iv
e
w
it
h
c
an
ce
r.

T
o
p
ic
s
in
cl
u
d
e
st
re
ss
r
ed
u
ct
io
n
,
n
u
tr
it
io
n
,
an
d
p
ra
ct
ic
al
i
ss
u
es
w
w
w
.g
il
d
as
cl
u
b
.o
rg
1
-8
8
8
-G
IL
D
A
-4
-U

(t
o
ll
f
re
e)
F
re
es
ta
n
d
in
g
G
il
d
a’
s
C
lu
b
s
in
1
9
c
it
ie
s
in
t
h
e
U
n
it
ed

b
ec
o
m
in
g
a
b
et
te
r
p
at
ie
n
t,
a
n
d

u
n
d
er
st
an
d
in
g
la
b
r
es
u
lt
s
w
w
w
.m
ye
lo
m
a.
o
rg
1
-8
0
0
-4
5
2
-2
8
7
3
(
to
ll
f
re
e)
4
–6
s
em
in
ar
s/

sy
m
p
o
si
a
ye
ar
ly
i
n

d
if
fe
re
n
t
re
gi
o
n
s
o
f
th
e
U
n
it
ed
S
ta
te
s
A
p
p
ro
x
im
at
el
y
2
0
0
–2
5
0
p
eo
p
le
a
tt
en
d

ea
ch
s
em
in
ar
/s
ym
p
o
si
a
ea
ch
y
ea
r
E
d
u
ca
ti
o
n
K
id
n
ey
C
an
ce
r
A
ss
o
ci
at
io
n
P
at
ie
n
t/
su
rv
iv
o
r
co
n
fe
re
n
ce
o
n

to
p
ic
s
in
cl
u
d
in
g
k
id
n
ey
c
an
ce
r
p
at
h
o
lo
gy
a
n
d
t
yp
es
o
f
tr
ea
tm
en
t
an
d
t
h
er
ap
y
w
w
w
.n
k
ca
.o
rg
2
–3
p
at
ie
n
t/
su
rv
iv
o
r
co
n
fe
re
n
ce
s
in
t
h
e
U
n
it
ed

St
at
es

ye
ar
ly
;
th
re
e
co
n
fe
re
n
ce
s
w
il
l
b
e
h
el
d
i
n

2
0
0
7
9
5
p
eo
p
le
r
eg
is
te
re
d
f
o
r
Ja
n
u
ar
y
2
0
0
7

P
at
ie
n
t/
Su
rv
iv
o
r
C
o
n
fe
re
n
ce
E
d
u
ca
ti
o
n
T
h
e
L
eu
k
em
ia
a
n
d
L
ym
p
h
o
m
a
So
ci
et
y
P
ro
vi
d
es
e
d
u
ca
ti
o
n
a
n
d

in
fo
rm
at
io
n
t
ar
ge
te
d
t
o
p
at
ie
n
ts
,
su
rv
iv
o
rs
,
an
d
c
ar
eg
iv
er
s.
T
o
p
ic
s
in
cl
u
d
e
tr
ea
tm
en
t
o
p
ti
o
n
s
an
d

h
o
w
t
o
s
tr
en
gt
h
en
c
o
p
in
g
an
d

d
ec
is
io
n
-m
ak
in
g
sk
il
ls
w
w
w
.l
eu
k
em
ia
–
ly
m
p
h
o
m
a.
o
rg
C
h
ap
te
rs
i
n

al
l
5
0
s
ta
te
s
co
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
d
u
ca
ti
o
n
L
iv
in
g
B
ey
o
n
d
B
re
as
t
C
an
ce
r
Su
p
p
o
rt
s
er
vi
ce
s.
N
ew
s
o
n
e
d
u
ca
ti
o
n
al
b
re
as
t
ca
n
ce
r
co
n
fe
re
n
ce
s
an
d

w
o
rk
sh
o
p
s
in
t
h
e
co
u
n
tr
y
w
w
w
.l
b
b
c.
o
rg
1
-8
8
8
-7
5
3
-5
2
2
2
(
to
ll
f
re
e)
C
o
n
fe
re
n
ce
s/
w
o
rk
sh
o
p
s
m
o
st
ly
i
n

P
h
il
ad
el
p
h
ia

ar
ea
.
N
at
io
n
al

co
n
fe
re
n
ce
s
an
n
u
al
ly
i
n

va
ri
ed
c
it
ie
s
E
d
u
ca
ti
o
n
L
ym
p
h
o
m
a
F
o
u
n
d
at
io
n
o
f
A
m
er
ic
a
(L
ym
p
h
o
m
a)
E
d
u
ca
ti
o
n
p
ro
gr
am
s—
q
u
al
it
y
o
f
li
fe
i
ss
u
es
;
to
p
ic
s
in
cl
u
d
e
ar
t
th
er
ap
y,
h
ea
li
n
g,
a
n
d
s
u
p
p
o
rt
f
o
r
ca
re
gi
ve
rs
w
w
w
.l
ym
p
h
o
m
ah
el
p
.o
rg
1
-8
0
0
-3
8
5
-1
0
6
0
(
to
ll
f
re
e)
E
d
u
ca
ti
o
n
al

p
ro
gr
am
s
at
m
u
lt
ip
le

lo
ca
ti
o
n
s
in

th
e
co
u
n
tr
y
E
d
u
ca
ti
o
n
L
ym
p
h
o
m
a
R
es
ea
rc
h
F
o
u
n
d
at
io
n

(L
ym
p
h
o
m
a)
E
d
u
ca
ti
o
n
w
o
rk
sh
o
p
s,
w
eb
ca
st
s/
p
o
d
ca
st
s,
t
el
ec
o
n
fe
re
n
ce
s,
a
n
d

fo
ru
m
s
d
is
cu
ss
in
g
a
ra
n
ge
o
f
to
p
ic
s
in
cl
u
d
in
g
tr
ea
tm
en
t
o
p
ti
o
n
s
an
d
s
u
p
p
o
rt
i
ss
u
es
w
w
w
.l
ym
p
h
o
m
a.
o
rg
1
-8
0
0
-5
0
0
-9
9
7
6
(
to
ll
f
re
e)
h
el
p
li
n
e@
ly
m
p
h
o
m
a.
o
rg
St
at
e
ch
ap
te
rs

ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
A
s
o
f
2
0
0
7
t
o
d
at
e,
1
0
,5
5
4
p
at
ie
n
ts
,
su
rv
iv
o
rs
a
n
d
l
o
ve
d
o
n
es
h
av
e
re
ce
iv
ed

ed
u
ca
ti
o
n
E
d
u
ca
ti
o
n
M
en
A
ga
in
st
B
re
as
t
C
an
ce
r
(B
re
as
t
C
an
ce
r)
W
o
rk
sh
o
p
s
gi
vi
n
g
in
fo
rm
at
io
n

an
d
p
ra
ct
ic
al
a
d
vi
ce
f
o
r
p
at
ie
n
ts

an
d
f
am
il
ie
s
in
fo
@
m
en
ag
ai
n
st
b
re
as
tc
an
ce
r.
o
rg
1
-8
6
6
-5
4
7
-6
2
2
2
In
a
ll
5
0

st
at
es
P
er
fo
rm
ed
e
d
u
ca
ti
o
n
w
o
rk
sh
o
p
s
in
1
5

st
at
es
i
n
cl
u
d
in
g
W
as
h
in
gt
o
n
,
D
C
7
5
p
eo
p
le
w
il
l
b
e
at
te
n
d
in
g
co
n
fe
re
n
ce
i
n

2
0
0
7
E
d
u
ca
ti
o
n
M
u
lt
ip
le
M
ye
lo
m
a
R
es
ea
rc
h

F
o
u
n
d
at
io
n
Se
m
in
ar
s
fo
r
p
at
ie
n
ts
a
n
d

ca
re
gi
ve
rs
o
n
l
at
es
t
re
se
ar
ch

d
ev
el
o
p
m
en
ts
w
w
w
.m
u
lt
ip
le
m
ye
lo
m
a.
o
rg
In
2
0
0
7
,
th
re
e
se
m
in
ar
s
to
b
e
h
el
d

in
B
o
st
o
n
,
P
h
il
ad
el
p
h
ia
,
an
d
P
al
o
A
lt
o
,
C
A
In
2
0
0
6
,
sy
m
p
o
si
a
in
A
tl
an
ta
,
C
le
ve
la
n
d
,
H
o
u
st
o
n
,
L
o
s
A
n
ge
le
s,
a
n
d
N
ew
Y
o
rk

av
er
ag
ed
1
2
4
a
tt
en
d
ee
s
ea
ch
E
d
u
ca
ti
o
n
N
at
io
n
al
C
o
al
it
io
n
f
o
r
C
an
ce
r
Su
rv
iv
o
rs
h
ip
Se
lf
-l
ea
rn
in
g
au
d
io
p
ro
gr
am

th
at
e
d
u
ca
te
s
ca
n
ce
r
p
at
ie
n
ts

o
n
d
ev
el
o
p
in
g
sk
il
ls
,
su
ch
a
s
co
m
m
u
n
ic
at
in
g,
n
eg
o
ti
at
in
g,

p
ro
b
le
m
-s
o
lv
in
g,
a
n
d
d
ec
is
io
n
–
m
ak
in
g
sk
il
ls
,
to
h
el
p
t
h
em

b
et
te
r
co
p
e
w
it
h
c
an
ce
r
w
w
w
.
ca
n
ce
rs
u
rv
iv
al
to
o
lb
o
x
.o
rg
In
a
ll
5
0

st
at
es
D
is
tr
ib
u
te
d
a
p
p
ro
x
im
at
el
y
3
0
,0
0
0
c
an
ce
r
Su
rv
iv
o
r
T
o
o
lb
o
x
es
a
s
a
C
D
s
et
i
n
2
0
0
5

an
d
2
0
0
6
T
A
B
L
E
3
-3
C
o
n
ti
n
u
ed

w
o
rk
sh
o
p
s
in
t
h
e
co
u
n
tr
y
w
w
w
.l
b
b
c.
o
rg
1
-8
8
8
-7
5
3
-5
2
2
2
(
to
ll
f
re
e)
C
o
n
fe
re
n
ce
s/
w
o
rk
sh
o
p
s
m
o
st
ly
i
n

P
h
il
ad
el
p
h
ia

ar
ea
.
N
at
io
n
al

co
n
fe
re
n
ce
s
an
n
u
al
ly
i
n

p
ro
gr
am
s
at
m
u
lt
ip
le

lo
ca
ti
o
n
s
in

th
e
co
u
n
tr
y
E
d
u
ca
ti
o
n
L
ym
p
h
o
m
a
R
es
ea
rc
h
F
o
u
n
d
at
io
n

(L
ym
p
h
o
m
a)
E
d
u
ca
ti
o
n
w
o
rk
sh
o
p
s,
w
eb
ca
st
s/
p
o
d
ca
st
s,
t
el
ec
o
n
fe
re
n
ce
s,
a
n
d

ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
A
s
o
f
2
0
0
7
t
o
d
at
e,
1
0
,5
5
4
p
at
ie
n
ts
,
su
rv
iv
o
rs
a
n
d
l
o
ve
d
o
n
es
h
av
e
re
ce
iv
ed

ed
u
ca
ti
o
n
E
d
u
ca
ti
o
n
M
en
A
ga
in
st
B
re
as
t
C
an
ce
r
(B
re
as
t
C
an
ce
r)
W
o
rk
sh
o
p
s
gi
vi
n
g
in
fo
rm
at
io
n

an
d
p
ra
ct
ic
al
a
d
vi
ce
f
o
r
p
at
ie
n
ts

an
d
f
am
il
ie
s
in
fo
@
m
en
ag
ai
n
st
b
re
as
tc
an
ce
r.
o
rg
1
-8
6
6
-5
4
7
-6
2
2
2
In
a
ll
5
0

st
at
es
P
er
fo
rm
ed
e
d
u
ca
ti
o
n
w
o
rk
sh
o
p
s
in
1
5

st
at
es
i
n
cl
u
d
in
g
W
as
h
in
gt
o
n
,
D
C
7
5
p
eo
p
le
w
il
l
b
e
at
te
n
d
in
g
co
n
fe
re
n
ce
i
n

2
0
0
7
E
d
u
ca
ti
o
n
M
u
lt
ip
le
M
ye
lo
m
a
R
es
ea
rc
h

F
o
u
n
d
at
io
n
Se
m
in
ar
s
fo
r
p
at
ie
n
ts
a
n
d

ca
re
gi
ve
rs
o
n
l
at
es
t
re
se
ar
ch

d
ev
el
o
p
m
en
ts
w
w
w
.m
u
lt
ip
le
m
ye
lo
m
a.
o
rg
In
2
0
0
7
,
th
re
e
se
m
in
ar
s
to
b
e
h
el
d

in
B
o
st
o
n
,
P
h
il
ad
el
p
h
ia
,
an
d
P
al
o
A
lt
o
,
C
A
In
2
0
0
6
,
sy
m
p
o
si
a
in
A
tl
an
ta
,
C
le
ve
la
n
d
,
H
o
u
st
o
n
,
L
o
s
A
n
ge
le
s,
a
n
d
N
ew
Y
o
rk

av
er
ag
ed
1
2
4
a
tt
en
d
ee
s
ea
ch
E
d
u
ca
ti
o
n
N
at
io
n
al
C
o
al
it
io
n
f
o
r
C
an
ce
r
Su
rv
iv
o
rs
h
ip
Se
lf
-l
ea
rn
in
g
au
d
io
p
ro
gr
am

th
at
e
d
u
ca
te
s
ca
n
ce
r
p
at
ie
n
ts

o
n
d
ev
el
o
p
in
g
sk
il
ls
,
su
ch
a
s
co
m
m
u
n
ic
at
in
g,
n
eg
o
ti
at
in
g,

p
ro
b
le
m
-s
o
lv
in
g,
a
n
d
d
ec
is
io
n
–
m
ak
in
g
sk
il
ls
,
to
h
el
p
t
h
em

b
et
te
r
co
p
e
w
it
h
c
an
ce
r
w
w
w
.
ca
n
ce
rs
u
rv
iv
al
to
o
lb
o
x
.o
rg
In
a
ll
5
0

st
at
es
D
is
tr
ib
u
te
d
a
p
p
ro
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at
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y
3
0
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0
0
c
an
ce
r
Su
rv
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o
r
T
o
o
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o
x
es
a
s
a
C
D
s
et
i
n
2
0
0
5

an
d
2
0
0
6
co
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
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E
d
u
ca
ti
o
n
P
an
cr
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ti
c
C
an
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r
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ct
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N
et
w
o
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(P
an
cr
ea
ti
c
C
an
ce
r)
E
d
u
ca
ti
o
n
al
w
o
rk
sh
o
p
s
an
d

co
n
fe
re
n
ce
s
w
w
w
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an
ca
n
.o
rg
1
-8
7
7
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7
2
-6
2
2
6
(
to
ll
f
re
e)
In
2
0
0
6
h
el
d

sy
m
p
o
si
a
in

C
h
ic
ag
o
,
N
ew

Y
o
rk
,
an
d

L
o
s
A
n
ge
le
s;

fi
ve
s
ym
p
o
si
a
sc
h
ed
u
le
d
f
o
r
2
0
0
7
A
p
p
ro
x
im
at
el
y
1
7
0
a
tt
en
d
ee
s
at
e
ac
h
2
0
0
6

sy
m
p
o
si
u
m
E
d
u
ca
ti
o
n
T
h
yr
o
id
C
an
ce
r
Su
rv
iv
o
rs
’
A
ss
o
ci
at
io
n
,
In
c.

(T
h
yr
o
id
C
an
ce
r)
E
d
u
ca
ti
o
n
al
w
o
rk
sh
o
p
s
w
w
w
.t
h
yc
a.
o
rg
1
-8
7
7
-5
8
8
-7
9
0
4
(
to
ll
f
re
e)
th
yc
a@
th
yc
a.
o
rg
C
h
ap
te
rs
i
n

3
6
c
it
ie
s
an
d

to
w
n
s
in
t
h
e
U
n
it
ed
S
ta
te
s
A
n
n
u
al
c
o
n
fe
re
n
ce
d
ra
w
s
o
ve
r
4
0
0

p
ar
ti
ci
p
an
ts
.
W
o
rk
sh
o
p
s
h
av
e
a
to
ta
l
o
f
2
0
0
-4
0
0
p
ar
ti
ci
p
an
ts
d
ep
en
d
in
g
o
n
h
o
w

m
an
y
w
o
rk
sh
o
p
s
ta
k
e
p
la
ce
i
n
a
p
ar
ti
cu
la
r
ye
ar
H
o
ld
in
g
fi
ve
f
re
e
1
-d
ay
r
eg
io
n
al

w
o
rk
sh
o
p
s,
p
lu
s
an
a
n
n
u
al
3
-d
ay

In
te
rn
at
io
n
al
T
h
yr
o
id
C
an
ce
r
Su
rv
iv
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rs
’
C
o
n
fe
re
n
ce
,
in
2
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0
7
E
d
u
ca
ti
o
n
U
S
T
o
o
(P
ro
st
at
e
C
an
ce
r)
E
d
u
ca
ti
o
n
w
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rk
sh
o
p
s—
in
-p
er
so
n

an
d
t
el
ep
h
o
n
e
w
w
w
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st
o
o
.o
rg
1
-8
0
0
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0
8
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8
6
6
(
to
ll
f
re
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O
ve
r
3
0
0

st
at
e
ch
ap
te
rs

ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
E
d
u
ca
ti
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n
T
h
e
W
el
ln
es
s
C
o
m
m
u
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it
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E
d
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ti
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n
w
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sh
o
p
s
w
w
w
.
th
ew
el
ln
es
sc
o
m
m
u
n
it
y.
o
rg
1
-8
8
8
-7
9
3
-W
E
L
L

(t
o
ll
f
re
e)
2
1
W
el
ln
es
s
C
o
m
m
u
n
it
ie
s
an
d
2
8

sa
te
ll
it
e
ce
n
te
rs
i
n
t
h
e
U
n
it
ed
S
ta
te
s
1
8
6
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0
0
u
n
iq
u
e
vi
si
to
rs
t
o
t
h
e
V
ir
tu
al

W
el
ln
es
s
C
o
m
m
u
n
it
y
E
d
u
ca
ti
o
n
Y
-M
E
N
at
io
n
al
B
re
as
t
C
an
ce
r
O
rg
an
iz
at
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n
,
In
c.

(B
re
as
t
C
an
ce
r)
E
d
u
ca
ti
o
n
t
el
ec
o
n
fe
re
n
ce
s
w
w
w
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e.
o
rg
1
-8
0
0
-2
2
1
-2
1
4
1
(
to
ll
f
re
e)
1
6
Y
-M
E

lo
ca
l
af
fi
li
at
es

in
v
ar
io
u
s
re
gi
o
n
s
o
f
th
e
U
n
it
ed
S
ta
te
s
E
m
o
ti
o
n
al

su
p
p
o
rt
A
C
S’
C
an
ce
r
Su
rv
iv
o
rs
N
et
w
o
rk
F
in
d
in
g
su
p
p
o
rt
g
ro
u
p
s,

re
la
x
at
io
n
c
la
ss
es
,
ca
n
ce
r-
re
la
te
d

co
m
m
u
n
it
y
ev
en
ts
,
ca
n
ce
r
b
o
o
k
s
an
d
a
rt
ic
le
s
w
w
w
.a
cs
cs
n
.o
rg
E
m
o
ti
o
n
al

su
p
p
o
rt
A
C
S’
M
an
-t
o
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an
P
ro
gr
am

(P
ro
st
at
e
C
an
ce
r)
P
er
so
n
al
v
is
it
s
an
d
t
el
ep
h
o
n
e
em
o
ti
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n
al
s
u
p
p
o
rt
a
n
d

in
fo
rm
at
io
n
o
n
p
ro
st
at
e
ca
n
ce
r
w
w
w
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an
ce
r.
o
rg
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cr
o
o
t/
E
SN
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n
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n
t/
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M
an
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o
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6
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sp
1
-8
0
0
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C
S-
2
3
4
5

(t
o
ll
f
re
e)
T
A
B
L
E
3
-3
C
o
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
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s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
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E
d
u
ca
ti
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n
P
an
cr
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ti
c
C
an
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r
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ct
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N
et
w
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(P
an
cr
ea
ti
c
C
an
ce
r)
E
d
u
ca
ti
o
n
al
w
o
rk
sh
o
p
s
an
d

co
n
fe
re
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ce
s
w
w
w
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an
ca
n
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rg
1
-8
7
7
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7
2
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2
2
6
(
to
ll
f
re
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2
0
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6
h
el
d

sy
m
p
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in

C
h
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ag
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,
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ew

Y
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rk
,
an
d

L
o
s
A
n
ge
le
s;

fi
ve
s
ym
p
o
si
a
sc
h
ed
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le
d
f
o
r
2
0
0
7
A
p
p
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x
im
at
el
y
1
7
0
a
tt
en
d
ee
s
at
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ac
h
2
0
0
6

sy
m
p
o
si
u
m
E
d
u
ca
ti
o
n
T
h
yr
o
id
C
an
ce
r
Su
rv
iv
o
rs
’
A
ss
o
ci
at
io
n
,
In
c.

(T
h
yr
o
id
C
an
ce
r)
E
d
u
ca
ti
o
n
al
w
o
rk
sh
o
p
s
w
w
w
.t
h
yc
a.
o
rg
1
-8
7
7
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8
8
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9
0
4
(
to
ll
f
re
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th
yc
a@
th
yc
a.
o
rg
C
h
ap
te
rs
i
n

3
6
c
it
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s
an
d

to
w
n
s
in
t
h
e
U
n
it
ed
S
ta
te
s
A
n
n
u
al
c
o
n
fe
re
n
ce
d
ra
w
s
o
ve
r
4
0
0

p
ar
ti
ci
p
an
ts
.
W
o
rk
sh
o
p
s
h
av
e
a
to
ta
l
o
f
2
0
0
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0
0
p
ar
ti
ci
p
an
ts
d
ep
en
d
in
g
o
n
h
o
w

m
an
y
w
o
rk
sh
o
p
s
ta
k
e
p
la
ce
i
n
a
p
ar
ti
cu
la
r
ye
ar
H
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ld
in
g
fi
ve
f
re
e
1
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ay
r
eg
io
n
al

w
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rk
sh
o
p
s,
p
lu
s
an
a
n
n
u
al
3
-d
ay

In
te
rn
at
io
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al
T
h
yr
o
id
C
an
ce
r
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rv
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C
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n
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,
in
2
0
0
7
E
d
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ca
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n
U
S
T
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o
(P
ro
st
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C
an
ce
r)
E
d
u
ca
ti
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n
w
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rk
sh
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p
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in
-p
er
so
n

an
d
t
el
ep
h
o
n
e
w
w
w
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st
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o
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rg
1
-8
0
0
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0
8
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8
6
6
(
to
ll
f
re
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O
ve
r
3
0
0

st
at
e
ch
ap
te
rs

ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
E
d
u
ca
ti
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n
T
h
e
W
el
ln
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s
C
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m
m
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it
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E
d
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ca
ti
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n
w
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rk
sh
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p
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w
w
w
.
th
ew
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ln
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sc
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m
m
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n
it
y.
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rg
1
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8
8
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9
3
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L
L

(t
o
ll
f
re
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2
1
W
el
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s
C
o
m
m
u
n
it
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s
an
d
2
8

sa
te
ll
it
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ce
n
te
rs
i
n
t
h
e
U
n
it
ed
S
ta
te
s
1
8
6
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0
0
u
n
iq
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e
vi
si
to
rs
t
o
t
h
e
V
ir
tu
al

W
el
ln
es
s
C
o
m
m
u
n
it
y
E
d
u
ca
ti
o
n
Y
-M
E
N
at
io
n
al
B
re
as
t
C
an
ce
r
O
rg
an
iz
at
io
n
,
In
c.

(B
re
as
t
C
an
ce
r)
E
d
u
ca
ti
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n
t
el
ec
o
n
fe
re
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ce
s
w
w
w
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e.
o
rg
1
-8
0
0
-2
2
1
-2
1
4
1
(
to
ll
f
re
e)
1
6
Y
-M
E

lo
ca
l
af
fi
li
at
es

in
v
ar
io
u
s
re
gi
o
n
s
o
f
th
e
U
n
it
ed
S
ta
te
s
E
m
o
ti
o
n
al

su
p
p
o
rt
A
C
S’
C
an
ce
r
Su
rv
iv
o
rs
N
et
w
o
rk
F
in
d
in
g
su
p
p
o
rt
g
ro
u
p
s,

re
la
x
at
io
n
c
la
ss
es
,
ca
n
ce
r-
re
la
te
d

co
m
m
u
n
it
y
ev
en
ts
,
ca
n
ce
r
b
o
o
k
s
an
d
a
rt
ic
le
s
w
w
w
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cs
cs
n
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rg
E
m
o
ti
o
n
al

su
p
p
o
rt
A
C
S’
M
an
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o
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an
P
ro
gr
am

(P
ro
st
at
e
C
an
ce
r)
P
er
so
n
al
v
is
it
s
an
d
t
el
ep
h
o
n
e
em
o
ti
o
n
al
s
u
p
p
o
rt
a
n
d

in
fo
rm
at
io
n
o
n
p
ro
st
at
e
ca
n
ce
r
w
w
w
.c
an
ce
r.
o
rg
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o
cr
o
o
t/
E
SN
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o
n
te
n
t/
E
SN
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X
_
M
an
_t
o
_M
an
_3
6
.a
sp
1
-8
0
0
-A
C
S-
2
3
4
5

(t
o
ll
f
re
e)
co
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
m
o
ti
o
n
al

su
p
p
o
rt
A
C
S’
R
ea
ch
t
o
R
ec
o
ve
ry
(B
re
as
t
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
fa
ce
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o
-f
ac
e
o
r
te
le
p
h
o
n
e
w
w
w
.c
an
ce
r.
o
rg
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cr
o
o
t/
E
SN
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n
te
n
t/
E
SN
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x
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R
ea
ch
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o
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o
ve
ry
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sp
1
-8
0
0
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C
S-
2
3
4
5

(t
o
ll
f
re
e)
E
m
o
ti
o
n
al

su
p
p
o
rt
A
ss
o
ci
at
io
n
o
f
C
an
ce
r
O
n
li
n
e
R
es
o
u
rc
es
E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
o
n
li
n
e
ch
at
w
w
w
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n
co
ch
at
.o
rg
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
p
o
rt
B
lo
ch
C
an
ce
r
F
o
u
n
d
at
io
n

E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
te
le
p
h
o
n
e,

p
ee
r
m
at
ch
in
g
w
w
w
.b
lo
ch
ca
n
ce
r.
o
rg
1
-8
0
0
-4
3
3
-0
4
6
4
(
to
ll
f
re
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In
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O
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In
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5
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su
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B
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T
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So
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C
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P
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su
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w
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fr
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In
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6
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m
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al

su
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C
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H
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N
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E
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1
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In
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5
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st
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In
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C
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M
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C
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G
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th
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su
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w
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7
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3
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(
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3
8
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ch
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th
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U
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St
at
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E
m
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ti
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al

su
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F
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O
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R
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k
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C
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m
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(B
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C
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E
m
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s
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t
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w
w
w
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6
6
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2
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4
7
5
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to
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In
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5
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st
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T
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B
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Se
rv
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P
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H
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w
t
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A
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s
L
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A
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C
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m
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(t
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E
m
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su
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A
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C
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O
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R
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m
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In
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5
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m
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ti
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su
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E
m
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p
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w
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6
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In
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N
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(
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O
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In
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5
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m
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T
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m
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ti
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su
p
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b
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em
ai
l
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p
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e
w
w
w
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T
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C
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gr
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t
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ll

fr
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t
1
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0
0
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7
0
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B
T
S
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2
8
7
),
e
x
t
2
5
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m
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su
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In
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0

st
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3
1
p
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m
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2
0
0
6
E
m
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ti
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al

su
p
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C
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r
H
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p
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N
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E
m
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e
1
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7
7
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6
7
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6
3
8
(
to
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In
a
ll
5
0

st
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p
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E
m
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al

su
p
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C
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r
In
fo
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at
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a
n
d

C
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n
se
li
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g
L
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f
A
M
C
C
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R
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C
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G
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,
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su
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t
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th
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m
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s
1
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0
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5
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7
7
7
(
to
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cl
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In
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ll
5
0

st
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E
m
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ti
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ch
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th
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U
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St
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E
m
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ti
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al

su
p
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F
ac
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O
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R
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k
f
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C
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m
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m
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t
(B
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C
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E
m
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s
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t
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p
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lo
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w
w
w
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ac
in
go
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k
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rg
1
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6
6
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2
4
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4
7
5
(
to
ll
f
re
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In
a
ll
5
0

st
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2
0
0
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0
0
m
at
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p
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ea
r
co
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ti
n
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Se
rv
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e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
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n
s
A
va
il
ab
le
C
ap
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y
E
m
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ti
o
n
al

su
p
p
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rt
G
il
d
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s
C
lu
b
W
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rl
d
w
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L
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r
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T
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w
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8
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IL
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(t
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F
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C
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in
1
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c
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e
U
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St
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In
2
0
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1
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0
0
m
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S
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E
m
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al

su
p
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)
E
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co
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g
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w
w
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6
6
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3
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0
5
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tr
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In
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5
0

st
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In
F
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2
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0
7
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6
4
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p
at
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L
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O
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3
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2
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P
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T
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eu
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w
w
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5
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ti
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n
al

su
p
p
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rt
L
iv
in
g
B
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o
n
d
B
re
as
t
C
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ce
r
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re
as
t
C
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ce
r)
E
m
o
ti
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al
s
u
p
p
o
rt
—
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n
e-
o
n
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n
e
vi
a
te
le
p
h
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n
e
w
w
w
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b
b
c.
o
rg
1
-8
8
8
-7
5
3
-5
2
2
2
(
to
ll
f
re
e)
In
a
ll
5
0

st
at
es
H
el
p
s
ap
p
ro
x
im
at
el
y
6
0
0
w
o
m
en
p
er
y
ea
r
E
m
o
ti
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n
al

su
p
p
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rt
L
u
n
g
C
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ce
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A
ll
ia
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ce
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u
n
g
C
an
ce
r)
E
m
o
ti
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n
al
s
u
p
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rt
—
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le
p
h
o
n
e
p
ee
r-
to
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r
(P
h
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n
e
B
u
d
d
y
P
ro
gr
am
),
o
n
li
n
e
co
m
m
u
n
it
y
w
w
w
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n
gc
an
ce
ra
ll
ia
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ce
.
o
rg
1
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0
0
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9
8
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4
3
6
(
to
ll
f
re
e)
In
a
ll
5
0

st
at
es
T
el
ep
h
o
n
e
re
fe
rr
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h
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tl
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e
fi
el
d
s
5
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0
0

ca
ll
s
an
d
r
es
p
o
n
d
s
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t
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t
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o
th
er

2
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0
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r
eq
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ts
f
o
r
in
fo
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ai
l
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ye
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l
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st
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f
th
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5
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0
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c
al
ls
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re

re
fe
rr
ed
t
o
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o
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iz
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s
fo
r
su
p
p
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rt
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ce
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et
c.
O
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li
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e
em
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o
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m
u
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rr
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as
o
ve
r
1
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r
eg
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te
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u
se
rs

an
d
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r
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li
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it
s
to
t
h
e
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te
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P
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B
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d
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gr
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h
as
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ad
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5
0

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d
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id
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al
m
at
ch
es
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n
2
0
0
6
E
m
o
ti
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n
al

su
p
p
o
rt
L
ym
p
h
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m
a
F
o
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n
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at
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o
f
A
m
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ic
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(L
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p
h
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m
a)
E
m
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ti
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al
s
u
p
p
o
rt
—
in
-p
er
so
n

gr
o
u
p
s
w
w
w
.l
ym
p
h
o
m
ah
el
p
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rg
1
-8
0
0
-3
8
5
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0
6
0
(
to
ll
f
re
e)
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
p
o
rt
L
ym
p
h
o
m
a
R
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ea
rc
h
F
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n
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at
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n

(L
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p
h
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m
a)
E
m
o
ti
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al
s
u
p
p
o
rt
—
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n
e-
o
n
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n
e
p
ee
r
su
p
p
o
rt
p
ro
gr
am
w
w
w
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ym
p
h
o
m
a.
o
rg
1
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0
0
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0
0
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9
7
6
(
to
ll
f
re
e)
h
el
p
li
n
e@
ly
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p
h
o
m
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o
rg
St
at
e
ch
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te
rs

ac
ro
ss
t
h
e
U
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it
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S
ta
te
s
B
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th
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rs
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al
f
o
f
2
0
0
7
,
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e
st
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at
ed
5
7
6
p
at
ie
n
ts

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d
c
ar
eg
iv
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s
w
il
l
b
e
m
at
ch
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f
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r
p
ee
r
su
p
p
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rt
a
s
o
f
2
0
0
7
E
m
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ti
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n
al

su
p
p
o
rt
N
at
io
n
al
O
va
ri
an
C
an
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r
C
o
al
it
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(
O
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C
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T
el
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p
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r-
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r
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ti
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al

su
p
p
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rt
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n
d
i
n
fo
rm
at
io
n
o
n

o
va
ri
an
c
an
ce
r
w
w
w
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va
ri
an
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rg
1
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8
8
-6
8
2
-7
4
2
6
(
to
ll
f
re
e)
8
0
l
ic
en
se
d

d
iv
is
io
n
s
in
4
2

U
.S
.
st
at
es
T
A
B
L
E
3
-3
C
o
n
ti
n
u
ed

Se
rv
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e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
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n
s
A
va
il
ab
le
C
ap
ac
it
y
E
m
o
ti
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n
al

su
p
p
o
rt
G
il
d
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s
C
lu
b
W
o
rl
d
w
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e
L
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s
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d
w
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rk
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o
p
s
to

ca
n
ce
r
p
at
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n
ts
a
n
d
t
h
ei
r
fa
m
il
ie
s
o
n
h
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w
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w
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h
c
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T
o
p
ic
s
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d
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ss
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d
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ra
ct
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ss
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es
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w
w
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8
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IL
D
A
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(t
o
ll
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re
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re
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C
lu
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in
1
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in
t
h
e
U
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it
ed

St
at
es
In
2
0
0
6
,
1
7
2
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0
0
m
em
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s
to
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ss
t
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e
U
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S
ta
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t
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ts
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rs
)
E
m
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al

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p
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rt
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ce
A
rm
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ro
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g
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o
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n
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at
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n

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A
F
)
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m
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ti
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al
s
u
p
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o
rt
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n
d

co
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n
se
li
n
g
w
w
w
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tr
o
n
g.
o
rg
1
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6
6
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3
5
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2
0
5
1
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0
0
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2
0
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1
6
7
(
cl
in
ic
al

tr
ia
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In
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ll
5
0

st
at
es
In
F
eb
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ar
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2
0
0
7
,
6
4
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p
at
ie
n
ts
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O
f
th
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se
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3
7
3
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C
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ar
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7
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P
at
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t
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d
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2
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m
at
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s
E
m
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l
5
0
s
ta
te
s
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m
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ti
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el
p
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ro
x
im
at
el
y
6
0
0
w
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m
en
p
er
y
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r
E
m
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ti
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st
at
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T
el
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h
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n
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re
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rr
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tl
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fi
el
d
s
5
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0
0

ca
ll
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d
r
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p
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n
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s
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2
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0
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r
eq
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ts
f
o
r
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e
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ai
l
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;
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l
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st
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th
e
5
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0
0
c
al
ls
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re

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d
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ve
r
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li
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h
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te
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m
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th
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h
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n
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d
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ro
gr
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ad
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in
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m
at
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n
2
0
0
6
E
m
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n
al

su
p
p
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rt
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m
a
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n
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o
f
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m
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m
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al
s
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p
p
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rt
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in
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er
so
n

gr
o
u
p
s
w
w
w
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p
h
o
m
ah
el
p
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rg
1
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0
0
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8
5
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0
6
0
(
to
ll
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re
e)
In
a
ll
5
0

st
at
es
E
m
o
ti
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al

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p
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rt
L
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m
a
R
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h
F
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n
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at
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n

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ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
B
as
ed
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n
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ce
d
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ri
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g
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e
fi
rs
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al
f
o
f
2
0
0
7
,
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e
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at
ed
5
7
6
p
at
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n
ts

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d
c
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s
w
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l
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e
m
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f
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r
p
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r
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p
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rt
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s
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f
2
0
0
7
E
m
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ti
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n
al

su
p
p
o
rt
N
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al
O
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ri
an
C
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r
C
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al
it
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(
O
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C
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r)
T
el
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p
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r-
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r
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al

su
p
p
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rt
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n
d
i
n
fo
rm
at
io
n
o
n

o
va
ri
an
c
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ce
r
w
w
w
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va
ri
an
.o
rg
1
-8
8
8
-6
8
2
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4
2
6
(
to
ll
f
re
e)
8
0
l
ic
en
se
d

d
iv
is
io
n
s
in
4
2

U
.S
.
st
at
es
co
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
m
o
ti
o
n
al

su
p
p
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rt
O
ra
l
C
an
ce
r
F
o
u
n
d
at
io
n
(O
ra
l
C
an
ce
r)
E
m
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ti
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n
al
s
u
p
p
o
rt
—
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n
li
n
e
p
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r-
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r
su
p
p
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rt
w
w
w
.
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ra
lc
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ce
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o
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n
d
at
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rg
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
p
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rt
P
an
cr
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ti
c
C
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ce
r
A
ct
io
n

N
et
w
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rk
(P
an
cr
ea
ti
c
C
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ce
r)
E
m
o
ti
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al
s
u
p
p
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rt
—
te
le
p
h
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n
e
o
r
e-
m
ai
l
w
w
w
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an
ca
n
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rg
1
-8
7
7
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7
2
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2
2
6
(
to
ll
f
re
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In
a
ll
5
0

st
at
es
In
2
0
0
6
,
p
ro
vi
d
ed
e
m
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ti
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al
s
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p
p
o
rt
t
o

6
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5
5
p
eo
p
le
E
m
o
ti
o
n
al

su
p
p
o
rt
P
la
n
et
C
an
ce
r
E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
re
tr
ea
ts
a
n
d

o
n
li
n
e
w
w
w
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la
n
et
ca
n
ce
r.
o
rg
O
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li
n
e
su
p
p
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rt
—
in

al
l
5
0
s
ta
te
s
R
et
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at
s
h
el
d

an
n
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ly
E
m
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ti
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al

su
p
p
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rt
P
re
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t
W
it
h
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E
m
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al
s
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rt
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r-
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r
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le
p
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o
r
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m
ai
l
w
w
w
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an
tw
it
h
ca
n
ce
r.
o
rg
1
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0
0
-7
4
3
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4
7
1
(
to
ll
f
re
e)
In
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ll
5
0

st
at
es
M
ak
es
a
p
p
ro
x
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at
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y
1
0
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m
at
ch
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y
ea
r;

h
av
e
ap
p
ro
x
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el
y
5
0
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0
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n
iq
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to
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to
t
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e
P
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t
W
it
h
C
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r
w
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an
n
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al
ly
E
m
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ti
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al

Su
p
p
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rt
St
ar
li
gh
t
St
ar
b
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t
C
h
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d
re
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’s

F
o
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n
d
at
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n
F
in
d
in
g
re
gi
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o
ffi
ce
s
ac
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th
e
U
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S
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ca
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w
w
w
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ls
b
.o
rg
E
m
o
ti
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n
al

su
p
p
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rt
Su
p
p
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rt
f
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r
P
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p
le
w
it
h
O
ra
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d
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d
a
n
d
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k
C
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r
(H
ea
d
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n
d
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k
C
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ce
r)
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m
o
ti
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s
u
p
p
o
rt
—
m
at
ch
in
g
p
ee
r-
to
-p
ee
r
w
w
w
.s
p
o
h
n
c.
o
rg
1
-8
0
0
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7
7
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9
2
8
(
to
ll
f
re
e)
in
fo
@
sp
o
h
n
c.
o
rg
5
4
c
h
ap
te
rs
i
n

ci
ti
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/t
o
w
n
s
ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
F
ro
m
2
0
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4
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0
7
m
ad
e
ap
p
ro
x
im
at
el
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0

m
at
ch
es
p
er
y
ea
r
E
m
o
ti
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n
al

Su
p
p
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rt
T
es
ti
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la
r
C
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ce
r
R
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e
C
en
te
r
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la
r
C
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ce
r)
E
m
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ti
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al
s
u
p
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rt
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ro
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p
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m
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l
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r
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n
ce
r
p
at
ie
n
ts
a
n
d

ca
re
gi
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w
w
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cr
c.
ac
o
r.
o
rg
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
p
o
rt
T
h
yr
o
id
C
an
ce
r
Su
rv
iv
o
rs
’
A
ss
o
ci
at
io
n
,
In
c.

(T
h
yr
o
id
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
e-
m
ai
l
o
r
fa
ce
-t
o
-f
ac
e
w
w
w
.t
h
yc
a.
o
rg
1
-8
7
7
-5
8
8
-7
9
0
4
(
to
ll
f
re
e)
th
yc
a@
th
yc
a.
o
rg
C
h
ap
te
rs
i
n

3
6
c
it
ie
s
an
d

to
w
n
s
in
t
h
e
U
n
it
ed
S
ta
te
s
A
p
p
ro
x
im
at
el
y
1
1
,0
0
0
a
n
n
u
al
ly
r
ec
ei
ve

h
el
p
f
ro
m
e
-m
ai
l
an
d
f
ac
e-
to
-f
ac
e
em
o
ti
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al
s
u
p
p
o
rt
W
eb
si
te
r
ec
ei
ve
s
o
ve
r
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0
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0
0
v
is
it
s
ea
ch

m
o
n
th
E
m
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ti
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n
al

su
p
p
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rt
U
lm
an
C
an
ce
r
F
u
n
d
f
o
r
Y
o
u
n
g
A
d
u
lt
s
E
m
o
ti
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al
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u
p
p
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rt
—
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m
ai
l
p
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r
gr
o
u
p
s
w
w
w
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lm
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fu
n
d
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rg
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8
8
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o
ll
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re
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Sp
o
n
so
rs

8
s
u
p
p
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rt

gr
o
u
p
s
n
at
io
n
al
ly
i
n
6

d
if
fe
re
n
t
ci
ti
es
E
m
o
ti
o
n
al

su
p
p
o
rt
U
S
T
o
o
(P
ro
st
at
e
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
g
ro
u
p
s—
in
–
p
er
so
n
a
n
d
o
n
li
n
e
w
w
w
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st
o
o
.o
rg
1
-8
0
0
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0
8
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8
6
6
(
to
ll
f
re
e)
O
ve
r
3
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0

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at
e
ch
ap
te
rs

ac
ro
ss
t
h
e
U
n
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ed
S
ta
te
s
T
A
B
L
E
3
-3
C
o
n
ti
n
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ed

Se
rv
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e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
m
o
ti
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al

su
p
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rt
O
ra
l
C
an
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r
F
o
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n
d
at
io
n
(O
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l
C
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ce
r)
E
m
o
ti
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al
s
u
p
p
o
rt
—
o
n
li
n
e
p
ee
r-
to
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ee
r
su
p
p
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rt
w
w
w
.
o
ra
lc
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ce
rf
o
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n
d
at
io
n
.o
rg
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
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rt
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an
cr
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ti
c
C
an
ce
r
A
ct
io
n

N
et
w
o
rk
(P
an
cr
ea
ti
c
C
an
ce
r)
E
m
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ti
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al
s
u
p
p
o
rt
—
te
le
p
h
o
n
e
o
r
e-
m
ai
l
w
w
w
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an
ca
n
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rg
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-8
7
7
-2
7
2
-6
2
2
6
(
to
ll
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a
ll
5
0

st
at
es
In
2
0
0
6
,
p
ro
vi
d
ed
e
m
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ti
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p
p
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rt
t
o

6
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5
5
p
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p
le
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m
o
ti
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n
al

su
p
p
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rt
P
la
n
et
C
an
ce
r
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m
o
ti
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s
u
p
p
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rt
—
re
tr
ea
ts
a
n
d

o
n
li
n
e
w
w
w
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la
n
et
ca
n
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r.
o
rg
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n
li
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e
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p
p
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rt
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in

al
l
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R
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at
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el
d

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ak
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0
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at
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r;

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av
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p
ro
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0
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u
n
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to
t
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e
P
re
gn
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t
W
it
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r
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te

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n
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ly
E
m
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ti
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Su
p
p
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St
ar
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gh
t
St
ar
b
ri
gh
t
C
h
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re
n
’s

F
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F
in
d
in
g
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al
o
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s
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th
e
U
n
it
ed
S
ta
te
s
fo
r
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in
g
em
o
ti
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s
u
p
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n
d
e
d
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ca
ti
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n
w
w
w
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ls
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rg
E
m
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ti
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al

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ti
es
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o
w
n
s
ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
F
ro
m
2
0
0
4
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0
0
7
m
ad
e
ap
p
ro
x
im
at
el
y
2
0
0

m
at
ch
es
p
er
y
ea
r
E
m
o
ti
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n
al

Su
p
p
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rt
T
es
ti
cu
la
r
C
an
ce
r
R
es
o
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rc
e
C
en
te
r
(T
es
ti
cu
la
r
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
g
ro
u
p
s—
e-
m
ai
l
fo
r
ca
n
ce
r
p
at
ie
n
ts
a
n
d

ca
re
gi
ve
rs
w
w
w
.t
cr
c.
ac
o
r.
o
rg
In
a
ll
5
0

st
at
es
E
m
o
ti
o
n
al

su
p
p
o
rt
T
h
yr
o
id
C
an
ce
r
Su
rv
iv
o
rs
’
A
ss
o
ci
at
io
n
,
In
c.

(T
h
yr
o
id
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
—
e-
m
ai
l
o
r
fa
ce
-t
o
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ac
e
w
w
w
.t
h
yc
a.
o
rg
1
-8
7
7
-5
8
8
-7
9
0
4
(
to
ll
f
re
e)
th
yc
a@
th
yc
a.
o
rg
C
h
ap
te
rs
i
n

3
6
c
it
ie
s
an
d

to
w
n
s
in
t
h
e
U
n
it
ed
S
ta
te
s
A
p
p
ro
x
im
at
el
y
1
1
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0
0
a
n
n
u
al
ly
r
ec
ei
ve

h
el
p
f
ro
m
e
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ai
l
an
d
f
ac
e-
to
-f
ac
e
em
o
ti
o
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al
s
u
p
p
o
rt
W
eb
si
te
r
ec
ei
ve
s
o
ve
r
2
5
0
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0
0
v
is
it
s
ea
ch

m
o
n
th
E
m
o
ti
o
n
al

su
p
p
o
rt
U
lm
an
C
an
ce
r
F
u
n
d
f
o
r
Y
o
u
n
g
A
d
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lt
s
E
m
o
ti
o
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al
s
u
p
p
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rt
—
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m
ai
l
p
ee
r
gr
o
u
p
s
w
w
w
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lm
an
fu
n
d
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rg
1
-8
8
8
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9
3
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U
N
D

(t
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ll
f
re
e)
Sp
o
n
so
rs

8
s
u
p
p
o
rt

gr
o
u
p
s
n
at
io
n
al
ly
i
n
6

d
if
fe
re
n
t
ci
ti
es
E
m
o
ti
o
n
al

su
p
p
o
rt
U
S
T
o
o
(P
ro
st
at
e
C
an
ce
r)
E
m
o
ti
o
n
al
s
u
p
p
o
rt
g
ro
u
p
s—
in
–
p
er
so
n
a
n
d
o
n
li
n
e
w
w
w
.u
st
o
o
.o
rg
1
-8
0
0
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0
8
-7
8
6
6
(
to
ll
f
re
e)
O
ve
r
3
0
0

st
at
e
ch
ap
te
rs

ac
ro
ss
t
h
e
U
n
it
ed
S
ta
te
s
co
n
ti
n
u
ed

Se
rv
ic
e
P
ro
gr
am
H
o
w
t
o
A
cc
es
s
L
o
ca
ti
o
n
s
A
va
il
ab
le
C
ap
ac
it
y
E
m
o
ti
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al

su
p
p
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rt
T
h
e
W
el
ln
es
s
C
o
m
m
u
n
it
y
E
m
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ti
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al
s
u
p
p
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rt
g
ro
u
p
s—
o
n
li
n
e
an
d
i
n
-p
er
so
n
w
w
w
.
th
ew
el
ln
es
sc
o
m
m
u
n
it
y.
o
rg
1
-8
8
8
-7
9
3
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E
L
L

(t
o
ll
f
re
e)

2
1
W
el
ln
es
s
C
o
m
m
u
n
it
ie
s
an
d
2
8

sa
te
ll
it
e
ce
n
te
rs
i
n
t
h
e
U
n
it
ed
S
ta
te
s
In
2
0
0
5
:
Se
rv
ed
m
o
re
t
h
an
2
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6
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0
0

p
eo
p
le
:
3
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0
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n
s
u
p
p
o
rt
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ro
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s
an
d

o
th
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to
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p
ro
gr
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s
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n
iq
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si
to
rs
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t
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e
V
ir
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W
el
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es
s
C
o
m
m
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E
m
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ti
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al

su
p
p
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rt
W
o
m
en
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C
an
ce
r
N
et
w
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rk
E
m
o
ti
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n
al
s
u
p
p
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rt
—
o
n
li
n
e
p
o
st
in
gs
w
w
w
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cn
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rg
In
a
ll
5
0

st
at
es
E
m
o
ti
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al

su
p
p
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rt
Y
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E
N
at
io
n
al
B
re
as
t
C
an
ce
r
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rg
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iz
at
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n
,
In
c.

(B
re
as
t
C
an
ce
r)
E
m
o
ti
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al
s
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p
p
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rt
—
m
at
ch
in
g
ca
n
ce
r
p
at
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n
ts
o
r
fa
m
il
y
m
em
b
er
s
w
it
h
s
u
rv
iv
o
rs
w
w
w
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e.
o
rg
1
-8
0
0
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2
1
-2
1
4
1
(
to
ll
f
re
e)
1
6
Y
-M
E

lo
ca
l
af
fi
li
at
es

in
v
ar
io
u
s
re
gi
o
n
s
o
f
th
e
U
n
it
ed
S
ta
te
s
F
in
an
ci
al

as
si
st
an
ce
B
ra
in
T
u
m
o
r
So
ci
et
y
C
A
R
E
S
F
in
an
ci
al
A
ss
is
ta
n
ce

P
ro
gr
am
p
ro
vi
d
es
g
ra
n
ts
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p

to
$
2
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0
0
p
er
f
am
il
y,
p
er
y
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r
fo
r
sp
ec
ifi
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rt
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n
,
h
o
m
e
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h
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ss
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n
ce
r
el
at
ed

to
b
ra
in
t
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m
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r
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o
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s,
h
o
m
e
ad
ap
ta
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r
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ed
t
o
b
ra
in

tu
m
o
r
d
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gn
o
si
s,
a
n
d
c
h
il
d
c
ar
e
w
w
w
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b
ts
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rg
1
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0
0
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7
0
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2
8
7
(
to
ll
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re
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In
a
ll
5
0

st
at
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2
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ra
n
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w
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n
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F
in
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al

as
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(t
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sc
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a
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p
p
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x
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t
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y;

al
so
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fi
n
an
ci
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a
ss
is
ta
n
ce

fo
r
in
su
ra
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c
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ay
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w
w
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eu
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m
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ap
te
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al
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t
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p
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t
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ap
y;

al
so
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ff
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s
fi
n
an
ci
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a
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ta
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ce

fo
r
in
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m
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w
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k
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m
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in
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fi
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
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PSYCHOSOCIAL HEALTH SERVICES 1��
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1�0 CANCER CARE FOR THE WHOLE PATIENT
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PSYCHOSOCIAL HEALTH SERVICES 1�1
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1��
4
A Model for Delivering
Psychosocial Health Services
CHAPTER SUMMARY
Many different pro�iders of health ser�ices—some in oncology, some deli�-
ering health care for other complex health conditions—recognize that psy-
chosocial problems can ha�e both direct and indirect effects on health and
ha�e de�eloped inter�entions to address them. Some of these inter�entions
are deri�ed from theoretical or conceptual frameworks; some are based on
research findings; and some ha�e undergone empirical testing. The best
ha�e all three characteristics. When �iewed together, these inter�entions
e�idence common elements that point to a model for the effecti�e deli�ery
of psychosocial health ser�ices. The components of this model include
(1) identifying patients with psychosocial health needs that are likely to
affect their health or health care, and de�eloping with patients appropriate
plans for (2) linking patients to appropriate psychosocial health ser�ices,
(�) supporting patients in managing their illness, (�) coordinating psycho-
social with biomedical health care, and (�) following up on care deli�ery
to monitor the effecti�eness of ser�ices and determine whether any changes
are needed. Effecti�e patient–pro�ider communication is central to all of
these components.
EFFECTIVE DELIVERY OF PSYCHOSOCIAL HEALTH CARE
The committee conducted a search1 to identify empirically validated
models of the effective delivery of psychosocial health services. This search
1 This search involved reviewing peer-reviewed literature, seeking recommendations from
experts in the delivery of cancer and other complex health care (experts contacted are listed
in Appendix B), and investigating models otherwise identified by the committee.

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
1�� CANCER CARE FOR THE WHOLE PATIENT
yielded a number of models tested and found to be effective in deliver-
ing these services and improving health. These models are described in
Annex 4-1 at the end of this chapter and are listed in Table 4-1, which
highlights components common to many or all of them: (1) identifying
patients with psychosocial health needs that are likely to affect their ability
to receive health care and manage their illness, and developing with patients
appropriate plans for (2) linking patients to appropriate psychosocial health
services, (3) supporting them in managing their illness, (4) coordinating
psychosocial with biomedical health care, and (5) following up on care
delivery to monitor the effectiveness of services and determine whether any
changes are needed. Table 4-1 also includes practice guidelines, produced
through systematic reviews of evidence, that identify approaches for the
effective delivery of psychosocial health services, along with the consen-
sus-based guidelines for Distress Management developed by the National
Comprehensive Cancer Network (NCCN)—an alliance of 21 leading U.S.
cancer centers. The various ways in which these programs carry out some
of these functions also are listed in the table and elaborated on in the text
that follows.
Evidence derived from the models listed in Table 4-1 (summarized in
Annex 4-1) strongly suggests that a combination of acti�ities rather than
any single activity by itself (e.g., screening, case management, illness self-
management) is needed to deliver appropriate psychosocial health care
effectively to individuals with complex health conditions. This conclusion
also is supported by the findings of several systematic reviews of psycho-
social care. For example, not surprisingly, screening by itself is less effective
than screening with follow-up. The U.S. Preventive Services Task Force, for
instance, recommends screening for depression in adults in clinical practices
only when practices have systems in place to ensure effective follow-up
treatment and ongoing monitoring. This recommendation reflects research
finding that only small benefits result from screening by itself, but larger
benefits when screening is accompanied by effective follow-up (U.S. Pre-
ventive Services Task Force, 2002). Consistent with this finding, a review
of studies of interventions to improve the management of depression in
primary care settings found that those with the most multidimensional
approaches (such as case management combined with clinician education
and structured links to connect primary and specialty medical care) were
most likely to achieve desired outcomes (Gilbody et al., 2003). Another
systematic review of randomized controlled trials designed to improve the
use of needed health and social services after hospital discharge found that
interventions emphasizing follow-up on the results of a needs assessment
showed more positive results than needs assessment alone (Richards and
Coast, 2003).
In this chapter, the committee recommends a unifying model for plan-

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b
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in
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a S
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co
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e
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p
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si
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g
st
an
d
ar
d
iz
ed

in
st
ru
m
en
ts

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
1�� CANCER CARE FOR THE WHOLE PATIENT
ning and delivering psychosocial health care for patients with cancer. This
model is based on the evidence yielded by the models listed in Table 4-1,
evidence suggesting added value from multiple components of effective care
delivery, and evidence (presented below) supporting the contributions of
many of these individual components to the effective provision of psychoso-
cial health care. The committee’s model, illustrated in Figure 4-1, integrates
the five common components identified above. Although these components
individually are in some cases supported by research findings, in other cases
there may not be strong evidence of their effectiveness as stand-alone in-
terventions. Nonetheless, the committee recommends their inclusion based
on their presence in the reviewed models and with the understanding that
FIGURE �-1 Model for the delivery of psychosocial health services.
Patient–Provider
Partnership
Provider Team
Follow-up and Re-evaluation
Development and Implementation of a Plan That:
Links
patient/family with
needed
psychosocial
services
Supports patients by:
• Providing personalized
information
• Identifying strategies to
address needs
• Providing emotional
support
• Helping patients
manage their illness
and health
Coordinates
psychosocial and
biomedical care
Patient/Family
Effective Patient–Provider Communication
fig S-1 and 4-1
R01103
Cancer Care
Identification of Psychosocial Needs

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1��
a lack of research findings is not necessarily synonymous with ineffective-
ness.2 We also note that effective patient–provider communication is central
to the success of all five components of the model. The model is described
in detail below.
A UNIFYING MODEL FOR CARE DELIVERY
Effective Patient–Provider Communication
At the heart of the committee’s model is a well-functioning patient–pro-
vider partnership, characterized, in large part, by effective communication.
Communicating effectively means that patients are able to receive and un-
derstand information about their illness and health care, and clearly express
their needs for assistance and the values and personal resources that will
shape the health care system’s response to these needs. Patients should be
comfortable with asking questions of all their care providers and equally
comfortable with responding to questions posed to them. They should be
competent and at ease as a member of their own health care team, which
will make decisions about the best strategy for addressing their illness.
Patients with language barriers, cognitive deficits, or other impediments to
communication should receive assistance in overcoming these barriers to
effective communication.
In many instances, members of the patient’s family also are involved
in this communication. In pediatric cases, a family member may be the
primary communicator and participant in planning care; with adults, some
patients may also have limited capacity to communicate. Even when adult
patients are able to communicate, as discussed in Chapters 1 and 2, family
members are key caregivers, especially for older adults. Treatment planning
and planning for managing the effects of illness requires communication
with the patient’s caregivers as well as with the patient. When patients do
not have the capacity to participate actively themselves, there needs to be
an explicit substitute who is legally and psychologically able to act as the
patient’s advocate.
Care providers similarly should possess the communication skills neces-
sary to be effective clinicians and supportive partners in care—a hallmark
of high-quality health care (IOM, 2001) and health care professionals
(IOM, 2003). These communication skills include establishing a good in-
terpersonal relationship with the patient (Arora, 2003). Key aspects of
2 For example, an intervention may be so obviously helpful (e.g., providing transportation
to help those without means to get to their appointments to do so) that it (rightly) has not
been a priority for research (see Chapter 3), or a research design may not have been sufficient
to detect the outcome of interest.

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
1�0 CANCER CARE FOR THE WHOLE PATIENT
effective patient–clinician communication identified in the National Cancer
Institute (NCI) report Patient-Centered Communication in Cancer Care
include (1) fostering healing relationships, (2) exchanging information,
(3) responding to emotions, (4) managing uncertainty, (5) making decisions,
and (6) enabling patient self management (Epstein and Street, 2007). As
described in Chapter 1, however, these attributes are not commonly found
in cancer care today.
Current Patient–Pro�ider Communication
Most patients, including those with cancer, say they want more infor-
mation from their physicians (Guadagnoli and Ward, 1998; Wong et al.,
2000; Gaston and Mitchell, 2005; Kahán et al., 2006; Kiesler and Auerbach,
2006). Patients report being dissatisfied with the limited information they
receive and when they receive it. Clinicians often have a limited understand-
ing of patients’ information needs, knowledge, and concerns. As a result,
they fail to provide the type or amount of information patients need and
communicate in language that patients often do not understand (Kerr et al.,
2003a,b; Kahán et al., 2006; Epstein and Street, 2007). Clinicians’ delivery
of bad news is particularly problematic. Conversely, patients do not always
disclose relevant information about their symptoms or concerns (Epstein
and Street, 2007).
Further, the majority of patients (ranging in studies from 60 to 90
percent) say that they prefer either an active or shared/collaborative role in
decisions made during office visits (Mazur and Hickman, 1997; Guadagnoli
and Ward, 1998; Dowsett et al., 2000; Wong et al., 2000; Gattellari et al.,
2001; Bruera et al., 2002; Davison et al., 2002, 2003; Keating et al., 2002;
Davison and Goldenberg, 2003; Janz et al., 2004; Gaston and Mitchell,
2005; Katz et al., 2005; Mazur et al., 2005; Ramfelt et al., 2005; Siminoff
et al., 2005; Flynn et al., 2006; Hack, 2006). However, studies show that
physicians substantially underestimate patients’ desire for an active or
shared role in their care (Bruera et al., 2002; Janz et al., 2004; Kahán et al.,
2006).
Some physicians, particularly female and primary care physicians, have
a more participatory or collaborative style with patients (Kaplan et al.,
1996; Cooper-Patrick et al., 1999; Roter et al., 2002; Street et al., 2003).
Lower levels of participatory decision making among physicians have been
associated with several patient characteristics, including age, education,
and minority status (Kaplan et al., 1996; Cooper-Patrick et al., 1999;
Adams et al., 2001; Xu et al., 2004), although these patient character-
istics do not account for the majority of the variation in conversational
behavior among either physicians or patients during office visits (Kaplan
et al., 1995; Benbassat et al., 1998). There is evidence that physicians and

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�1
patients mutually influence each other’s conversational behavior (Robinson
and Roter, 1999; Del Piccolo et al., 2002; Street et al., 2003, 2005; Butow
et al., 2004; Janz et al., 2004; Maly et al., 2004; Gordon et al., 2005;
Kindler et al., 2005; Adler, 2007) and that physicians may take their cues
in part from patients, who typically exhibit relatively passive behavior dur-
ing office visits (Gordon et al., 2005, 2006a,b; Street and Gordon, 2006).
Such passivity characterizes even physicians when they become patients.
The average patient asks five or fewer questions during a 15-minute office
visit, and many ask no questions (Brown et al., 1999, 2001; Sleath et al.,
1999; Cegala et al., 2000; Butow et al., 2002; Bruera et al., 2003; Kindler
et al., 2005). Among the most passive patients are those above age 60,
those with more severe illness or multiple comorbid conditions (includ-
ing psychological distress), those who are less well educated, and males
(Butow et al., 2002; Sleath and Rubin, 2003; Street et al., 2003; Maliski
et al., 2004; Gaston and Mitchell, 2005; Flynn et al., 2006; Gordon et al.,
2006b; Siminoff et al., 2006a). Minorities also have been noted to be more
passive in physician–patient interactions (Gordon et al., 2005; Street et al.,
2005; Siminoff et al., 2006a; Gordon et al., 2006b). Moreover, a systematic
review of randomized controlled trials and uncontrolled studies of inter-
ventions designed to improve the provision of information and encourage
participation in decision making by patients with advanced cancer found
that although almost all patients expressed a desire for full information,
only about two-thirds wished to participate actively in decision making
about their care (Gaston and Mitchell, 2005).
Correspondence between patients’ preferred role in decision making
and their actual role during office visits with physicians, although intuitively
compelling, has relatively little empirical support as a factor affecting pa-
tient outcomes and quality of care. However, such correspondence has been
linked with reduced anxiety (Gattellari et al., 2001; Kahán et al., 2006) and
depression (Schofield and Butow, 2003), satisfaction with treatment choices
(Keating et al., 2002), and more appropriate treatment choices (Siminoff
et al., 2006b). The NCI report Patient-Centered Communication in Cancer
Care articulates a comprehensive research agenda for better understanding
and intervening to improve patient–provider communication (Epstein and
Street, 2007).
The Importance of Communication
There is reason to be concerned about findings of poor communication
and lack of patient involvement. A substantial body of evidence indicates
that effective physician–patient communication is positively related to pa-
tients’ health outcomes (Kaplan et al., 1989; Stewart, 1995; Piccolo et al.,
2000; Heisler et al., 2002; Engel and Kerr, 2003; Kerr et al., 2003a,b;

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Schofield and Butow, 2003; Maliski et al., 2004). Patients of physicians
who involve them in treatment decisions during office visits have better
health outcomes than those of physicians who do not (Kaplan et al., 1995;
Adams et al., 2001; Gattellari et al., 2001; Hack et al., 2006). Physicians’
participatory decision-making style also is positively related to the qual-
ity and outcomes of patient care generally (Guadagnoli and Ward, 1998),
including continuity of care (Kaplan et al., 1996), health outcomes (Adams
et al., 2001; van Roosmalen et al., 2004), decreased psychological distress
(Zachariae et al., 2003), trust in the physician (Berrios-Rivera et al., 2006;
Gordon et al., 2006a,b), more preventive health services (Woods et al.,
2006), better communication with physicians (Thind and Maly, 2006), and
satisfaction with care (Kaplan et al., 1996; Adams et al., 2001). Similar
benefits are found specifically in cancer care (Arora, 2003).
Inter�entions to Impro�e Communication
Many clinicians have identified a need for stronger communication
skills for themselves, their patients, and families. Interventions to improve
physician–patient communication have targeted either physicians or pa-
tients; few have targeted both simultaneously (Epstein and Street, 2007).
Training physicians to negotiate with patients has been found to in-
crease patient involvement in treatment decisions (Timmermans et al.,
2006). A substantial literature also documents the effects of interventions
aimed at improving patients’ participation in their care (Epstein and Street,
2007). Such interventions include those aimed at improving patients’ par-
ticipation in multiple decisions over multiple visits with physicians (e.g.,
question asking, decision elicitation, and negotiation skills), enhancing the
presentation of options, tailoring risk information, and providing testimoni-
als describing outcomes of treatment to help patients participate in single or
discrete decisions and improve information seeking (question asking).
The means used to deliver these interventions also vary widely. “Coached
care” for chronic disease makes use of patient medical records, guidelines
for clinical care management reviewed with patients before office visits, and
coaching in using information to participate effectively with physicians.
This approach has been linked with improved physiological and functional
patient outcomes and increased patient participation in physician–patient
communication among patients with chronic disease (Greenfield et al., 1988;
Kaplan et al., 1989; Rost et al., 1991; Keeley et al., 2004). Decision aids
to assist patients in choosing among treatment options have been shown to
decrease decisional conflict, increase satisfaction with treatment decisions
(Whelan et al., 2004), and decrease adjuvant therapy for low-risk patients
with breast cancer (Peele et al., 2005; Siminoff et al., 2006b).
An extensive literature documents the beneficial effects of interactive
videos presenting treatment options, tailored risk information, and patient

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testimonials describing outcomes of treatment. Benefits include improved
functional outcomes, increased confidence in treatment, and increased sat-
isfaction with decision making (Flood et al., 1996; Liao et al., 1996; Barry
et al., 1997). Following similar interventions, others have noted changes
in patients’ treatment choices, favoring less invasive treatment (Mazur
and Merz, 1996). O’Connor and colleagues (1995) note that these types
of decision aids, compared with usual care, yield improvements in pa-
tients’ knowledge of their disease and its treatment, more realistic expecta-
tions, less decisional conflict, more active participation in office visits, and
less indecision about options. No effect on patient anxiety was observed.
Videos with or without supporting materials have been shown to en-
hance patients’ understanding of treatment options (Onel et al., 1998) and
physician–patient communication during office visits (Frosch et al., 2001;
Brown et al., 2004a). In a review of small media interventions, counseling
and small-group education sessions, or a combination of these approaches,
Briss and colleagues (2004) found that while such interventions increased
patients’ knowledge about their disease and the accuracy of their risk per-
ceptions, whether such interventions lead to increased patient participation
in treatment decisions has been less well studied.
Other interventions to improve patient participation in care, such as
the use of question-prompt sheets, audiotaping of visits, or more basic deci-
sion aids, have been linked with greater patient involvement in treatment
decisions (Butow et al., 1994; Guadagnoli and Ward, 1998; Cegala et al.,
2000; Maly et al., 2004; Gaston and Mitchell, 2005).
Conclusions
Despite strong evidence for the importance of effective patient–provider
communication and patients’ participation in decision making in achieving
better health care outcomes, such communication is not yet the norm. As
described above and in Chapter 1, physician–patient communication is
generally inadequate, and patients are poorly prepared for communicating
effectively (whether this involves simple information-seeking skills or more
active involvement in treatment decisions). Physicians, too, are poorly pre-
pared to elicit patients’ information needs and preferences for involvement
in their care. There is a need for more creative and intensive interventions
to enhance patient–physician communication and support patient decision
making, targeting in particular those most at risk (e.g., older adults, those
of lower socioeconomic status, and those with comorbid conditions includ-
ing psychosocial distress and decreased cognition). Many approaches are
being tested to meet this need. These approaches require more rigorous
evaluation, especially in less well-organized health care settings.
NCI’s state-of-the-science report on patient-centered communication in
cancer care (Epstein and Street, 2007) can inform clinical practice, as well

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as research. This report finds that most skill-building interventions targeting
clinicians consist of formal training as part of medical education or continu-
ing education programs (e.g., a 3-day course on communication skills) to
increase clinician knowledge and improve communication behaviors. Very
little research has focused on changing clinical practices and health care
systems. With respect to clinician education and training programs, the
report finds that the most effective communication skill-building programs
are those that are carried out over a long period of time, use multiple
teaching methods, allow for practice, provide timely feedback, and allow
clinicians to work in groups with skilled facilitators. The report also finds
that because clinicians develop routines for interacting with patients early
in their careers, communication training should occur early in professional
education. Clinicians should seek out such opportunities for communica-
tion training as part of their continuing education activities. Training is
available from such sources as the Institute for Healthcare Communication
(http://www. healthcarecomm.org/index.php) to improve knowledge, skills,
and clinical practice in communication with patients.
With respect to improved patient communication, use of tools to sup-
port communication and formal strategies to teach communication tech-
niques to patients have been found effective in improving communication
with clinicians. These tools and techniques include encouraging patients to
write down their questions and concerns prior to meeting with clinicians;
providing written “prompts” to patients that serve as reminders of key
questions or issues; and providing information and decision aids about the
illness, treatment, and health through booklets, videos, coaching sessions,
and use of diaries (Epstein and Street, 2007). Patient advocacy organiza-
tions can play an important role in strengthening the patient side of the pa-
tient–provider partnership through the provision of such tools and training.
An example is the Cancer Survival Toolbox (available free of charge), which
teaches people with cancer how to obtain information, make decisions,
solve problems, and generally communicate more effectively with health
care providers (Walsh-Burke et al., 1999; NCCS, 2007).
Identifying Patients with Psychosocial Health Needs
Identifying psychosocial health needs is the essential precursor to meet-
ing those needs. This can occur in several ways: (1) patients may volunteer
information about these needs in their discussions with health care provid-
ers; (2) providers may ask about psychosocial health needs during struc-
tured or unstructured clinical conversations with the patient; (3) providers
may screen patients using validated instruments; and (4) providers may
perform an in-depth psychosocial assessment of patients after or indepen-
dently of screening. These approaches vary considerably in their reliability
and their sensitivity in uncovering patients’ needs.

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Relying on patients to volunteer information or on providers to elicit
it in the course of standard care both are unlikely to be adequate. A study
of the ability of medical oncologists and nurses in the United States to rec-
ognize on their own the psychosocial problems of their oncology patients
found that these providers frequently failed to detect depression at all and
when they did, greatly underestimated its seriousness (Passik et al., 1998;
McDonald et al., 1999). This finding parallels data on the low rate of
detection of depression in primary care settings when depression screen-
ing tools are not used. And while there is evidence for the effectiveness of
structured clinical interviews in detecting some psychosocial needs (e.g., for
treatment of depression), this approach is criticized for the amount of time
it takes and the requirement for specialized (costly) personnel to conduct
the interviews (Trask, 2004). Patients’ reluctance to volunteer information
about their need for psychosocial services (Arora, 2003) can also impede
the detection of problems.
In contrast, several screening tools and in-depth needs assessment in-
struments have been found to be effective in reliably identifying individuals
with psychosocial health needs. Screening involves the administration of a
test or process to individuals who are not known to have or do not neces-
sarily perceive that they have or are at risk of having a particular condition
or need. It is used to identify those who are likely to have a condition of
interest and should benefit from its detection and treatment. A screening
instrument yields a yes or no answer as to whether an individual is at high
risk. A positive screen should be followed by a more in-depth needs as-
sessment. In some practices, needs assessment may be performed without
a preceding screen.
Screening
Many screening instruments are brief and can be self-administered by
the patient—sometimes in the waiting room before a visit with the clini-
cian. Instruments range from the low-tech, requiring only paper and pencil,
to the high-tech, using a computer-based touch screen; some of the latter
instruments automatically compare responses with those given previously
and generate an automatic report to the clinician. The success of many
practices in using such screening tools counters generalizations that patients
are unwilling to discuss psychosocial concerns. Still, as discussed below, too
few clinicians employ these reliable methods routinely to identify patients
with psychosocial health needs.
Current practice Screening for psychosocial health needs using validated
instruments is not routinely practiced in oncology. In a national survey3 of
3 Response rate = 47 percent.

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1,000 randomly selected members of the American Society of Clinical On-
cology, 14 percent of respondents reported screening for psychosocial dis-
tress using a standardized tool. A third reported that they did not routinely
screen for distress. Of the 65 percent that did routinely screen, 78 percent
did so using some combination of asking direct questions (61 percent), such
as “How are you coping?”, “Are you depressed?”, or “How do you feel?”;
observing patients’ moods (57 percent); taking their history (53 percent);
talking to family members (44 percent); or other methods. Similarly, of 15
organizations responding to a survey of 18 member institutions of NCCN,
only 8 reported that they routinely screened for distress in at least some of
their patients. Of these 8, 3 screened as part of a patient interview, 2 used
a self-report measure, and 3 used both. Only 3 routinely screened all of
their patients; the majority screened only certain groups of patients, such as
those undergoing bone marrow transplantation or those with breast cancer
(Jacobsen and Ransom, 2007).
Reasons given by individual oncologists for not screening include a lack
of time, a perception of limited referral resources, a belief that patients are
unwilling or resistant to discussing distress, and uncertainty about identify-
ing and treating distress.4 Reasons given by member institutions of NCCN
for not screening include screening not considered necessary or worthwhile
(one institution), not enough resources to address those identified by a
screener as needing care (one institution), and insufficient resources to both
screen and address identified needs (one institution). The other institutions
reported that they were currently in the process of pilot testing procedures
for routine screening for distress (Jacobsen and Ransom, 2007).
The above concerns may not be justified. The experiences of those who
have developed or now use screening tools show that screening need not
take much time and that patients are willing to communicate their distress.
Further, research shows that physicians’, nurses’, and other personnel’s in-
dividual assessments of the levels of stress experienced by patients or their
family members are less accurate than a standardized instrument (Hegel
et al., 2006). Although there remain some unresolved issues in screening
that could be addressed by further research (see Chapter 8), the research
and implementation examples reviewed below and in Chapter 5 demon-
strate that screening can be both an effective and a feasible mechanism
for identifying individuals with psychosocial health needs. The variation
among existing validated screening instruments can facilitate the inclu-
sion of screening in routine clinical practice by accommodating the differ-
ing interests and resources of various clinical sites. Patient Care Monitor
(PCM), for example, is automated and part of a comprehensive patient
assessment, care, and education system. Other instruments, such as the
4 Personal communication, William F. Pirl, MD, January 4, 2007.

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Distress Thermometer, require nothing more than paper and pencil. Most
are administered by patients themselves. Although some must be purchased
commercially and require a licensing agreement and fee, others are avail-
able at no cost.
Screening tools In addition to having strong predictive value,5 effective
screening tools should be brief and feasible for routine use in various clini-
cal settings. Such tools are available for screening patient populations and
identifying individuals with some types of psychosocial health care needs.
For example, a number of screening tools for detecting mental health prob-
lems, such as anxiety, depression, adjustment disorders, or post-traumatic
stress disorder (PTSD) or post-traumatic stress syndrome (PTSS), have been
tested with cancer survivors in different oncology settings and found to
meet these criteria. The Brief Symptom Inventory (BSI)©-18, for example,
measures depression, anxiety, and overall psychological distress level in ap-
proximately 4 minutes (Derogatis, 2006). Its reliability, validity, sensitivity,
and specificity have been documented in tests involving more than 1,500
cancer patients with more than 35 different cancer diagnoses (Zabora et al.,
2001), as well as adult survivors of childhood cancer (Recklitis et al., 2006).
The Hospital Anxiety and Depression Scale (HADS) also is useful in screen-
ing individuals with cancer or other illnesses for psychological distress be-
cause its 14-item, self-report questionnaire omits measures of fatigue, pain,
or other somatic expressions of psychological distress that could instead be
symptoms of physical illness and confound the interpretation of screening
results (Zigmond and Snaith, 1983). Other useful psychological screening
tools include, for example, the Brief Zung Self-Rating Depression Scale;
Rotterdam Symptom Checklist; Beck Depression Inventory-Short Form
(Trask, 2004); PTSD Checklist-Civilian Version (Andrykowski et al., 1998);
Patient Health Questionnaire (PHQ), SF (Short Form)-8; 4-item Primary
Care PTSD Screen (Hegel et al., 2006); and PHQ-9 (Lowe et al., 2004).
However, in addition to unresolved questions about the appropriate
use and interpretation of the results obtained with these psychological
screening tools (Trask, 2004; Mitchell and Coyne, 2007), their varying foci
necessitate either administering multiple tools—infeasible for most clinical
5 Screening instruments are never 100 percent accurate and should be distinguished from
diagnostic tools and processes. All screening instruments detect false positives (people without
the condition whom the instrument falsely identifies as having the condition) and the converse
(false negatives). Consequently, a measure of all screening tools is their predictive value—how
accurately they identify those who actually have the condition(s) of interest (the instrument’s
sensitivity) and identify those who do not (the instrument’s specificity).

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settings6—or choosing among them. No guidance exists with respect to
which tools should be used for the different types of patients seen in various
clinical settings. Moreover, these tools do not screen for the broader array
of psychosocial health needs. If, for example, an individual has inadequate
social support or financial resources but perceives this situation as the norm
or does not experience clinically significant anxiety or depression, these
screening instruments may not identify this individual as having psychoso-
cial health needs. In a small study of distress in 50 candidates for bone mar-
row transplantation, patient reports of distress were found to be accounted
for only in part by depression and/or anxiety, suggesting that patients’
experiences of distress “were not adequately captured by simple measures
of anxiety and depression (the HADS)” and that the “patient definition of
distress is qualitatively different from symptoms of anxiety and depression”
(Trask et al., 2002:923). Other studies also have observed variable results
from the use of different screening instruments (Hegel et al., 2006).
Thus, there is a need for psychosocial screening instruments that can ac-
curately and efficiently detect a comprehensive range of health-related psy-
chosocial problems—including difficulties with logistical or material needs
(e.g., transportation or insurance), inadequate social supports, behavioral
risk factors, and emotional problems such as anxiety or depression. Al-
though few in number, instruments that can be used to screen for a broader
array of psychosocial needs exist. These instruments vary somewhat in
their content and approach, which may reflect their different purposes
and conceptual bases (as well as the absence of a shared understanding
of health-related psychosocial stress and psychosocial health services, as
discussed in Appendix B). Although additional testing of these instruments
would be beneficial, the validity, reliability, and feasibility of some are suf-
ficiently established that many oncology practices now routinely screen all
of their patients for psychosocial health needs using such instruments as
those described below.
The Distress Thermometer uses a visual analogue scale displayed on a
picture of a thermometer to screen for any type of psychological distress.
Individuals are instructed to circle the number (from zero [no distress] to 10
[extreme distress]) that best describes how much distress they have experi-
enced over the past week (NCCN, 2006). The single-item, paper-and-pencil
Distress Thermometer is self-administered in less than a minute. Testing
6 Although the Comprehensive Breast Cancer program of Dartmouth-Hitchcock Medical
Center routinely screens all newly diagnosed breast cancer patients using multiple instruments,
including the Distress Thermometer, PHQ, Primary Care PTSD Screen, screens for alcohol
(CAGE questionnaire) and tobacco use, the Medical Outcomes Short Form (SF-8), and a self
report version of the Charlson Comorbidity index. Personal communication from E. Dale
Collins, MD, Director, Comprehensive Breast Program, Dartmouth-Hitchcock Medical Center,
March 1, 2007. See also Hegel et al., 2006.

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in individuals with different types of cancer at multiple cancer centers has
shown that a rating of 4 or higher correlates with significant distress and
that the instrument affords good sensitivity and specificity (Jacobsen et al.,
2005). Testing has also revealed concordance with the HADS and BSI (Roth
et al., 1998; Trask et al., 2002; Akizuki et al., 2003; Hoffman et al., 2004;
Jacobsen et al., 2005). In guidelines issued by NCCN, a 35-item Problem
List provided on the same page as the thermometer asks patients to identify
separately the types of problems they have (e.g., financial, emotional, work-
related, spiritual, family, physical symptoms) (NCCN, 2006). This tool can
help identify psychosocial problems that are not linked to psychological
distress, as well as those that are. The Problem List does not ask about
behaviors such as smoking, alcohol or drug use, exercise, or diet or about
cognitive problems that could interfere with illness self-management. The
Distress Thermometer is available at no cost from NCCN. No data are
available on the extent of its use overall, although three member cancer
centers of NCCN report using it (Jacobsen and Ransom, 2007).
The Patient Care Monitor (PCM) 2.0 is an automated, 86-item screen-
ing tool that reviews psychological status, problems in role functioning,
and overall quality of life, as well as physical symptoms and functioning.
Designed to screen for patient problems frequently encountered by practic-
ing oncologists, it is completed by the patient using a computer-based tablet
and pen prior to each visit with the clinician. The questionnaire takes an
average of 11 minutes to complete. Once completed, it is sent automati-
cally via secure wireless connection to a central server at the practice site;
responses are compared with those given previously; and the results are
printed out for review by the clinician prior to the visit with the patient.
Scores for distress and despair/depression are automatically generated and
included in the PCM report. Measures of the instrument’s validity and reli-
ability for use with adults have been favorable in testing among multiple
convenience samples of patients in one large oncology practice (Fortner
et al., 2003; Schwartzberg et al., 2007). PCM has not undergone tests of
its sensitivity and specificity; however, a threshold for follow-up assessment
has been established using normalized T scores derived from a normative
database created from data submitted by licensed users. At present, a score
of 65 is more than 1 standard deviation beyond the mean and represents the
top 5 percent for either distress or despair/depression. Patients with scores
of 65 or higher are strongly recommended to receive further assessment.
PCM is a component of the PACE (Patient Assessment, Care, and Educa-
tion) product, commercially available from the Supportive Care Network,
and has a Spanish version. As of January 2007, it was in use by more than
110 oncology practices in the United States.
The Psychosocial Assessment Tool© (PAT) 2.0 was developed for use
with families of children newly diagnosed with cancer to assess the patient’s

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level of risk for psychosocial health problems during treatment. Risk fac-
tors for which it screens pertain to family structure and resources, social
support, children’s knowledge of their disease, school attendance, children’s
emotional and behavioral concerns, marital/family problems, family beliefs,
and other family stressors (Kazak et al., 2001). PAT differs from the Dis-
tress Thermometer and PCM in that it was developed for children and for
one-time use, although the developers report interest in its periodic use.7
The first version of PAT was pilot tested with 107 families and found to
be feasible for routine use as a self-report instrument completed by families
(Kazak et al., 2001). The 2.0 version includes modifications to improve
clarity, ease of use, and content and can be completed in approximately 10
minutes. In subsequent testing, total scores on PAT 2.0 were significantly
correlated in the predicted direction with parents’ acute distress, anxiety,
and conflict and children’s behavioral symptoms, as well as with lower fam-
ily cohesion. Favorable construct, criterion-related, and convergent validity
were found as compared with established tools for measuring children’s
behavior, parents’ anxiety and acute stress, and family functioning, as well
as with physician- and nurse-completed versions of PAT. Results of tests
of internal consistency and test–retest reliability have also been favorable.
Cut-off scores for identifying varying levels of need have been determined a
priori on the basis of research on the original PAT. As of January 2007, PAT
2.0 was recommended only for research purposes, although its developers
believe that upon publication of the most recent research findings, there will
be interest in its clinical use and that it is suitable for such use.8
Psychosocial Screen for Cancer (PSSCAN) is a 21-item tool that mea-
sures perceived social support (instrumental, emotional, network size),
desired social support, anxiety, depression, and quality of life. Developed
by the British Columbia Cancer Agency (BCCA) of Canada, it has per-
formed well on psychometric tests and tests of reliability and validity in
three samples totaling almost 2,000 patients. PSSCAN is in clinical use in
a few Canadian cancer centers, although BCCA is committed to its use by
all new patients. It also is being used in Ireland and in some U.S. facilities.
BCCA has formulated norms for a healthy population (based on a sample
size of 800; manuscript in preparation) and has developed software for the
tool’s use on touch-screen computers. This software has been pilot tested
with cancer patients and is ready for large-scale use. The questionnaire can
be completed in less than 10 minutes by all patients (except those who do
not read English or have severe problems with eye or motor control). The
7 Personal communication, A. Kazak, Children’s Hospital of Philadelphia, January 4,
2007.
8 Personal communication, A. Kazak, Children’s Hospital of Philadelphia, January 9,
2007.

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software also autoscores all items on completion and prints a one-page
summary of scored data for immediate staff use and incorporation into
patient charts. Raw data are automatically deposited into an Excel data file
for later processing with standard statistical packages. PSSCAN is available
at no cost (Linden et al., 2005).9
Other screening tools also exist and have been subjected to or are in
various stages of testing. Some of these are simple checklists to identify
psychosocial health needs (Pruyn et al., 2004). Although there are reports
on pilot tests of the feasibility of these checklists, they have not undergone
further testing for their validity, reliability, or predictive value as screens.
However, a review of six studies of the use of checklists to identify psycho-
social health needs in cancer care found that use of these screening tools
positively influenced health care providers to pay attention to psychosocial
health needs, talk with their patients about these needs, and make referrals
to providers of psychosocial health services (Kruijver et al., 2006).
Assessment
In the absence of a common definition of needs assessment and de-
scriptions of how it relates to screening,10 in this report psychosocial needs
assessment is defined as the identification and examination of the psycho-
logical, behavioral, and social problems of patients that interfere with their
ability to participate fully in their health care and manage their illness and
its consequences. Needs assessment contrasts with screening in that the lat-
ter is a brief process for identifying the risk for having psychosocial health
needs, while needs assessment is a more in-depth evaluation that confirms
the presence of such needs and describes their nature. Needs assessment
thus requires more time than screening.
Full understanding of each individual’s psychosocial problems and
resulting needs is frequently cited as an essential precursor to ensuring that
cancer patients receive the necessary psychosocial health services (NICE,
9 Personal communication, Wolfgang Linden, PhD, University of British Columbia, March
1 and 2, 2007.
10 There appears to be no commonly accepted definition of the process of needs assessment
across systematic reviews of the process (Thompson and Briggs, 2000; Gilbody et al., 2006a),
reviews of tools for assessing the health needs of patients with cancer (Wen and Gustafson,
2004) and other conditions (Asadi-Lari and Gray, 2005), and clinical practice guidelines
(NICE, 2004). Indeed, none of the preceding reviews includes a definition of needs assess-
ment. Although this may be because the process is so well understood that it needs no defini-
tion, evidence suggests otherwise. Asadi-Lari and Gray (2005) pointedly note the sometimes
interchangeable use of the terms “needs” and “health status” and “health-related quality of
life” in some reviews. Discussion of how needs assessment relates to screening also is absent.
At least one tool (Kazak et al., 2001) is simultaneously identified as a screening tool and as-
sessment instrument.

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2004), to providing good-quality health care overall, and to improving
health-related quality of life (Wen and Gustafson, 2004). The United King-
dom’s National Institute for Clinical Evidence recommends, for example,
that “assessment and discussion of patients’ needs for physical, psycho-
logical, social, spiritual, and financial support should be undertaken at key
points (such as at diagnosis; at commencement, during, and at the end of
treatment; at relapse; and when death is approaching)” (NICE, 2004:7).
Needs assessments are theorized to facilitate communication between pa-
tients and providers about issues that are not otherwise raised (Wen and
Gustafson, 2004).
A systematic review of randomized trials (Gilbody et al., 2002) and
one cancer-specific randomized pilot project (Boyes et al., 2006) address-
ing needs assessment used by itself or with minimal follow-up (such as
feedback of results to clinicians) found little support for the effectiveness
of the process in improving psychosocial functioning. When combined with
follow-up care planning and implementation of those plans, however, needs
assessment was found to be effective in improving access to needed services
in a systematic review of randomized controlled trials evaluating the ef-
fectiveness of interventions in improving access to services after hospital
discharge11 (Richards and Coast, 2003). In another systematic review and
meta-analysis, systematic assessment of medical, functional, psychosocial,
and environmental domains and follow-up implementation of an interven-
tion plan were found to be effective in preventing functional decline in
older adults (Stuck et al., 2002). Needs assessment was also identified as
one essential ingredient in reduced hospital admissions or medical costs in
a qualitative analysis of effective care coordination programs for Medicare
(Chen et al., 2000). These findings are consistent with that of the committee
that a combination of activities, rather than a single activity by itself (in this
case, needs assessment), is needed for the effective delivery of appropriate
psychosocial health care.
A systematic search by Wen and Gustafson (2004) for needs assessment
instruments for patients with cancer revealed 17 patient and 7 family instru-
ments (generally self-report) for which information was available on their
reliability, validity, burden, and psychometric properties (see Table 4-2).
These instruments varied greatly in the needs addressed,12 the domains
11 However, this review also found only “limited support” for the effectiveness of needs
assessment when implementation of the recommended services was the responsibility of dif-
ferent providers.
12 For example: physical, psychological, and medical interactions; sexual problems; coping
information; activities of daily living; interpersonal communication; availability and continu-
ity of care; physician competence; support networks; spiritual needs; child care; family needs;
pain/symptom control; home services; and having a purpose.

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1��
covered, and the items included in similarly named domains (see Table 4-3).
Reviewers also found a lack of evidence for the instruments’ sensitivity
to change over time, failure to examine their required reading levels, and
failure to address the period after initial treatment for cancer. Despite these
deficiencies and the need for further research (see Chapter 8), results of the
two systematic reviews that examined the use of needs assessment instru-
ments when processes for follow-up on identified needs were implemented,
as well as the reasonableness of needs assessment as a means of identifying
individuals who need psychosocial health services, argue for the usefulness
of the process as a prelude to the planning and provision of such services.
This conclusion also is supported by the models for delivering psychosocial
health services contained in Table 4-1.
Planning Care to Address Identified Needs
Once psychosocial health needs have been identified, a plan should
be developed that will assist the patient in managing his or her illness and
maintaining the highest possible level of functioning and well-being. Nearly
all of the models for delivering psychosocial health services reviewed by the
committee (Table 4-1) identify care planning as a component of the inter-
vention. This inclusion of planning may originate from (1) the long-standing
practice of developing treatment or care plans as a part of routine medical,
nursing, and other health care; (2) the logic of developing a plan for action
before action is taken; and/or (3) the identification of care planning in some
research as an essential to improving health care. Although care planning
in itself has not been the subject of much health services research, some
research identifies it as one ingredient in effective interventions to improve
health care outcomes in adults with chronic illnesses (Chen et al., 2000;
Stuck et al., 2002). Written plans developed jointly with the patient and
containing clear goals are characteristic of care coordination initiatives that
achieve reductions in hospital care and medical costs (Chen et al., 2000).
Moreover, research has shown that people vary in their expression of the
need for psychosocial support and in the types of support they prefer.
For these reasons, the committee believes that planning for the deliv-
ery of psychosocial health services is a logical step in meeting the need for
such services. Advance planning is likely to facilitate the identification and
implementation of interventions best suited to each patient’s individual
situation and to conserve resources not useful to the patient. Such planning
for psychosocial health services should address mechanisms needed to ef-
fectively (1) link the patient with the needed services, (2) support the patient
in managing his or her illness and its consequences, and (3) coordinate
psychosocial and biomedical health care.

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
1�� CANCER CARE FOR THE WHOLE PATIENT
TABLE �-2 Comparison of Needs Assessment Instruments (Wen and
Gustafson, 2004)
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
Patient General Patient General
CARES
(Cancer
Rehabilitation
Evaluation
System)
Find how
cancer affects
psychosocial,
physical and
behaviors
Patient
completes
93-132 items;
6 domains:
physical,
psychological,
medical interaction,
marital, sexual,
miscellaneous
Five-point
scale plus “do
you want help
(yes/no)?”
Competency-
based model of
coping
Literature;
Interviews
with
patients
and family;
Expert
review
Correlated
with SCL-
90, KPS,
DAS; Good
agreement
with
interviewers.
Domains α
ranged from
.88-.92
Subscales:
r=.84-.95
87%
agreement
n=71,
time=1 week
Time: 10-45
min; Reading
level N/A;
Acceptability:
most found it
easy to use
CARES-SF
(Cancer
Rehabilitation
Evaluation
System-Short
Form)
Shortens the
CARES for use
with clinical
trials
Patient
completes
38–57 items;
5 domains:
physical,
psychological,
medical interaction,
marital, sexual
Five-point
scale plus “do
you want help
(yes/no)?”
Selected
from the
CARES by
experts
Correlated
well with
CARES,
FLIC, KPS,
DAS; Large
sample sizes
Domains α
ranged from
.60-.84
Dimensions:
r=.69-.92
81%-86%
agreement
n=120,
time=10 days
Find physical,
psychosocial
change
with time
Correlated
with FLIC @
1, 7, 14 mo
post-diagnosis
Time N/A;
Reading
level N/A;
Acceptable N/A
CPNS
(Cancer
Patient Need
Survey)
Measures the
importance
of needs and
the degree to
which their
needs are met
Patient
completes
51 items;
5 domains: coping,
help, information,
work, and cancer
shock
“Importance”:
seven-point
Likert scale;
“how well
met”: seven-
point Likert
scale
Interviews
with
nurses,
patients,
and
caregivers
using
Objective
Content
Test and
Q-sort
method
Overall: 0.91
Importance:
.83-.93
How well
met: .79-.95
Domain:
α=.88-.92
Time: 2–45
min; Reading
level N/A;
Acceptability:
reported no
problems when
used
CPNQ
(Cancer
Patient Need
Questionnaire)
Assesses unmet
needs of people
with cancer
Patient
completes
71 items;
5 domains:
psychological
needs, health info,
ADLs, patient
care/support,
interpersonal
communication
Five-point
scale: “what
is your level
of need for
help?”
Literature;
Interviews;
Expert
review;
Pilot test
Discriminant
validity: able
to distinguish
patients with
different
disease stages
Domains α
ranged from
.78-.90
Intercorrelation
all significant
kappa >.4
n=124,
time=10-14
days
Time: 20
min; Reading
level: 4th or
5th grade;
Acceptability:
25% non-
completion rate

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1��
TABLE �-2 Comparison of Needs Assessment Instruments (Wen and
Gustafson, 2004)
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
Patient General Patient General
CARES
(Cancer
Rehabilitation
Evaluation
System)
Find how
cancer affects
psychosocial,
physical and
behaviors
Patient
completes
93-132 items;
6 domains:
physical,
psychological,
medical interaction,
marital, sexual,
miscellaneous
Five-point
scale plus “do
you want help
(yes/no)?”
Competency-
based model of
coping
Literature;
Interviews
with
patients
and family;
Expert
review
Correlated
with SCL-
90, KPS,
DAS; Good
agreement
with
interviewers.
Domains α
ranged from
.88-.92
Subscales:
r=.84-.95
87%
agreement
n=71,
time=1 week
Time: 10-45
min; Reading
level N/A;
Acceptability:
most found it
easy to use
CARES-SF
(Cancer
Rehabilitation
Evaluation
System-Short
Form)
Shortens the
CARES for use
with clinical
trials
Patient
completes
38–57 items;
5 domains:
physical,
psychological,
medical interaction,
marital, sexual
Five-point
scale plus “do
you want help
(yes/no)?”
Selected
from the
CARES by
experts
Correlated
well with
CARES,
FLIC, KPS,
DAS; Large
sample sizes
Domains α
ranged from
.60-.84
Dimensions:
r=.69-.92
81%-86%
agreement
n=120,
time=10 days
Find physical,
psychosocial
change
with time
Correlated
with FLIC @
1, 7, 14 mo
post-diagnosis
Time N/A;
Reading
level N/A;
Acceptable N/A
CPNS
(Cancer
Patient Need
Survey)
Measures the
importance
of needs and
the degree to
which their
needs are met
Patient
completes
51 items;
5 domains: coping,
help, information,
work, and cancer
shock
“Importance”:
seven-point
Likert scale;
“how well
met”: seven-
point Likert
scale
Interviews
with
nurses,
patients,
and
caregivers
using
Objective
Content
Test and
Q-sort
method
Overall: 0.91
Importance:
.83-.93
How well
met: .79-.95
Domain:
α=.88-.92
Time: 2–45
min; Reading
level N/A;
Acceptability:
reported no
problems when
used
CPNQ
(Cancer
Patient Need
Questionnaire)
Assesses unmet
needs of people
with cancer
Patient
completes
71 items;
5 domains:
psychological
needs, health info,
ADLs, patient
care/support,
interpersonal
communication
Five-point
scale: “what
is your level
of need for
help?”
Literature;
Interviews;
Expert
review;
Pilot test
Discriminant
validity: able
to distinguish
patients with
different
disease stages
Domains α
ranged from
.78-.90
Intercorrelation
all significant
kappa >.4
n=124,
time=10-14
days
Time: 20
min; Reading
level: 4th or
5th grade;
Acceptability:
25% non-
completion rate
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1��
TABLE �-2 Continued
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
SCNS
(Supportive
Care Needs
Survey)
Assesses impact
of cancer on
lives of cancer
patients
Patient
completes
61 items;
5 domains:
psychological needs,
health information,
physical/daily living
needs, patient care
and support, and
sexuality
Five-point
scale: “what
is your level
of need for
help?”
Factor analysis Based on
CPNQ;
Expert
review;
Pilot test
Domain α
ranged from
.87-.97
Time: 20 min;
Reading level:
5th grade;
Acceptability:
patients
found it
understandable,
35%
non-completion
HCS-PF
(Home Care
Study-Patient
Form)
Assesses
attitudes of
terminally and
chronically ill
patients toward
medical care
Interview;
patient may
be able to
complete
33 items;
2 domains
Satisfaction with:
care availability,
care continuity, MD
availability, MD
competence, MD
personality, MD
communication,
general satisfaction
Preference:
home care,
decision-making
Agreement
with five-point
Likert scale
Based on
scales by
Zyranski
and Ware;
Pilot test
Poor
discriminant
validity
Domains α
ranged from
0.10-0.75
Time: N/A;
Reading
level: N/A;
Acceptability:
N/A
NEQ
(Need
Evaluation
Questionnaire)
Assess needs
of hospitalized
cancer patients
in clinical
setting
Patient
completes
23 items;
3 domains: helps
diagnosis/prognosis,
exam/treatment,
communication and
relations
Agreement
with yes/no
statement
Factor analysis Interviews;
Pilot tests
Domains: α
ranged from
.69-.81
Cohen’s kappa
ranged from
.54-.94
Time=1week
Time: 5 min;
Reading
level N/A;
Acceptability:
63% of patients
OK; 24% in-
complete; 3%
missing data
PNAT
(Patient Needs
Assessment
Tool)
Screen cancer
patients for
physical and
psychological
functioning
problems
Part of
clinician
interview
16 items;
3 domains:
physical,
psychological, and
social
Five-item
impairment
scale for each
area within
domain
Literature;
Clinical
experience
Physical
domain
correlates
with KPS;
Psychological
with GAIS,
BSI MPAS,
BDI Social
with ISEL
Domains: α
ranged from
.85-.94
Interrater
reliability:
Friedman: .87,
.76, .73;
Spearman rank
order: .59-.98
Time: 20-30
min.;
Training level:
low;
Acceptablity:
N/A
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1��
TABLE �-2 Continued
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
PNI
(Psychosocial
Needs
Inventory)
Measure
the unmet
psychosocial
needs of cancer
patients and
their caregivers
Patient and
caregiver
complete
48 items; 7
domains: related to
health professionals,
information needs,
related to support
networks, identify
needs, emotional
and spiritual,
practical and
childcare need
Five-point
“Importance”
scale
Five-point
“Satisfaction”
scale
Literature;
Interviews;
Focus
group
Discriminant
validity:
detected the
differences
among
needs at
four critical
movements
of cancer
trajectory
α >.7 for each
of the first six
domains
Time: N/
A; Read
level: N/A;
Acceptability:
59% non-
response
rate and the
characteristic
of the non-
respondents
was examined
PCNA
(Prostate
Cancer Needs
Assessment)
Measures the
importance and
unmet needs
of men with
prostate cancer
Patient
completes
135 items;
3 domains:
information,
support, and care
delivery
Ten-point
“Importance”
scale
Ten-point
“Extent Need
Met” scale
Literature;
Interviews
using
Critical
Incident
Technique
and
Nominal
Group;
Expert
review
Correlated
with overall
satisfaction-
with-care
Agreement on
classification
by three
researchers
working
independently
R=.97
Time=2 weeks
Time: 43 min;
Reading level:
7th grade;
Acceptability:
11%
non-completion
PINQ
(Patient
Information
Need
Questionnaire)
Measures the
information
need among
cancer patients
for the
improvement
of clinical
practice and
research
Patient
completes
17 items; 2
domains: disease-
oriented and
information about
access to help and
solution
Four-point
scale
Factor analysis;
Similar structure
was found across
Hodgkins; breast
cancer patients
and over time
Literature;
Interviews
Correlated
with RSC,
State-Anxiety
Inventory
and MMPI
D-scale
Domains: α
ranged from
.88-.92;
Inter-item
correlation
>0.2
Detected the
changing needs
of patients
at three time
points before
and after first
treatment
Time: N/A;
Reading
level: N/A;
Acceptability:
reasons to
refuse: not
wanting to be
reminded of
their illness,
feeling too old,
etc.
DINA
(The
Derdiarian
Informational
Needs
Assessment)
Measures the
informational
needs of cancer
patients
Interview
144 items;
4 domains:
disease, personal,
family, and social
relationship
Check the
need present
and rate
importance on
10-point scale
Theory of
information
seeking; Needs
and hierarchy of
needs
Expert
review
Domain:
α exceeded
0.9 for all
domains
80%-100%
agreement
found using
McNemar test
time=15-20
min.
Detected
difference
between
control
group and
experimental
group
Time: N/A;
reading
level N/A;
Acceptability:
N/A
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�1
TABLE �-2 Continued
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
INM
(Information
Needs
Measure)
Assess the
priority of
informational
needs of cancer
patients
Patient
completes
9 information
categories
Control
preference
scale;
ranking of
informational
resources;
prioritization
of information
needs
Based on the
theoretical
framework of
Derdiarian
Literature;
Based on
works by
Derdiarian;
Expert
review
Kendall zeta:
.95-.99
Kendall
coefficient of
agreement:
.20-.35
Time: N/A;
Reading
level: N/A;
Acceptability:
N/A
TINQ-BC
(Toronto
Informational
Needs
Questionnaire-
Breast Cancer)
Identify
information
needed by
women
with recent
breast cancer
diagnosis to
deal with
illness
Patient
completes
51 items; 5
domains: diagnosis,
tests, treatments,
physical,
psychosocial
Five-point
“Importance”
scale
Literature;
Nurse
opinions
Correlated
with the
information
scale of HOS
Overall
α=.97;
Domains α
ranged from
.73-.93;
Correlation
of subscales
to total scale:
.38-.88
Time: 20
min; Reading
level: N/A;
Acceptability:
OK
Stage Specific Stage Specific
PACA
(Palliative
Care
Assessment)
Assess
effectiveness
of hospital’s
palliative care
program
Professional
completes
12 items;
3 domains:
symptom control,
insight, and future
placement
Four-point
scale, except
five-point
scale for
insight
Interviews
of patients
Symptom
scores
correlated
with
McCorkle
symptom
distress scale
Kappa ranged
from .44-1
Sensitivity
to detected
statistically
significant
intervention
effects
Time: few
min.; Training
level: N/A;
Acceptability:
N/A
continued

Copyright © National Academy of Sciences. All rights reserved.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
http://www.nap.edu/catalog/11993.html
1�2 CANCER CARE FOR THE WHOLE PATIENT
Instrument
Purpose and
Administration Items and Domains
Question
Format
Conceptual and
Measurement
Model
Validity Reliability
Responsiveness Burden
Content
Validity
Construct
Validity
Internal
Consistency Reproducibility
STAS
(Support Team
Assessment
Schedule)
Assess quality
of palliative
care of multi-
disciplinary
cancer support
teams
Professional
completes
17 items;
8 domains:
pain/symptom
control, insight,
psychosocial,
family needs, home
services, planning
affairs, support of
other professionals,
communication
Five-point
Likert scale
Literature;
Clinical
experience
Correlated
with patient
and family
score,
Karnofsky
score, Spitzer
QOL index.
Support
team scores
correlate with
patient and
family scores
Interrater
reliability:
90%
agreement
except
predictability
Detected
improvement
in palliative
care
Evaluated 2
palliative care
support teams
Time: 2 min.
for existing
patients, 5 min.
new patients;
Training
level: N/A;
Acceptability:
N/A
NEST
(The Needs
Near the
End-of-Life
Care Screening
Tool)
Measure
experiences
of end-of-life
patients and
possibly assess
impact of
interventions
Interview;
patient
completes if
possible
135 items;
8 domains: patient-
MD relations,
social connection,
caregiving need,
psychological
distress, spirituality,
personal
acceptance, have
purpose, clinician
communication
Five-point
Likert scale
Frame for a
good death;
Factor analysis;
Measurement
invariance across
sociodemographic
strata; Item
response theory
on the short
version
Literature;
Interviews
and focus
groups;
Symptom
items from
other
scales;
Pilot tests;
Expert
review
Domains: α
ranged from
0.63-0.85 at
baseline and
0.64-0.89 at
follow up
Time: N/A;
Reading
level N/A;
Acceptability:
69.2% patients
found interview
helpful
Caregiver Caregiver
FAMCARE Measure family
satisfaction
with advanced
cancer care
Family
completes
20 items;
4 domains:
information giving,
care availability,
physical care, pain
control, and 2 other
items
Five-point
Likert
“Satisfaction
scale”
Interviews;
Family
ranking
of items;
Q-sort
Correlated
with
McCusker
and with
overall
satisfaction
with care
questions
Overall
α: 0.93;
Domains: α
ranged from
.61-.88
R=.92
n=23,
time <23 hrs Time: 22 min; Reading level: N/A; Acceptability: N/A TABLE �-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� Instrument Purpose and Administration Items and Domains Question Format Conceptual and Measurement Model Validity Reliability Responsiveness Burden Content Validity Construct Validity Internal Consistency Reproducibility STAS (Support Team Assessment Schedule) Assess quality of palliative care of multi- disciplinary cancer support teams Professional completes 17 items; 8 domains: pain/symptom control, insight, psychosocial, family needs, home services, planning affairs, support of other professionals, communication Five-point Likert scale Literature; Clinical experience Correlated with patient and family score, Karnofsky score, Spitzer QOL index. Support team scores correlate with patient and family scores Interrater reliability: 90% agreement except predictability Detected improvement in palliative care Evaluated 2 palliative care support teams Time: 2 min. for existing patients, 5 min. new patients; Training level: N/A; Acceptability: N/A NEST (The Needs Near the End-of-Life Care Screening Tool) Measure experiences of end-of-life patients and possibly assess impact of interventions Interview; patient completes if possible 135 items; 8 domains: patient- MD relations, social connection, caregiving need, psychological distress, spirituality, personal acceptance, have purpose, clinician communication Five-point Likert scale Frame for a good death; Factor analysis; Measurement invariance across sociodemographic strata; Item response theory on the short version Literature; Interviews and focus groups; Symptom items from other scales; Pilot tests; Expert review Domains: α ranged from 0.63-0.85 at baseline and 0.64-0.89 at follow up Time: N/A; Reading level N/A; Acceptability: 69.2% patients found interview helpful Caregiver Caregiver FAMCARE Measure family satisfaction with advanced cancer care Family completes 20 items; 4 domains: information giving, care availability, physical care, pain control, and 2 other items Five-point Likert “Satisfaction scale” Interviews; Family ranking of items; Q-sort Correlated with McCusker and with overall satisfaction with care questions Overall α: 0.93; Domains: α ranged from .61-.88 R=.92 n=23, time <23 hrs Time: 22 min; Reading level: N/A; Acceptability: N/A TABLE �-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT TABLE �-2 Continued Instrument Purpose and Administration Items and Domains Question Format Conceptual and Measurement Model Validity Reliability Responsiveness Burden Content Validity Construct Validity Internal Consistency Reproducibility FIN (Family Inventory of Needs) Measure needs of cancer patient’s family and extent needs are met Family completes 20 items, 1 domain Ten-point “importance” scale and met/ unmet check Fulfillment theory; factor analysis Literature; Items from original Critical Care Family Needs Inventory; Family review Correlated with FAMCARE Overall α for “importance” scale: 0.83 Time: “short”; Reading level: N/A; Acceptability: N/A FIN-H (Family Inventory of Needs- Husbands) Measure information needs of husbands of women with breast cancer Husband completes 30 items; 5 domains: surgical care needs, communication with MD, family relations, diagnosis/treatment specifics, husband’s involvement Five-point “Importance” subscale and three-point “Need Met” subscale Factor analysis Based on FIN Pilot test Overall α ranged from .90-.93; 73%-87% of items: item-total correlation 0.4-0.7 Importance subscale: r=0.82, Need Met subscale: r=.79 time: <24 hrs Time: 16-30 min; Reading level: N/A; Acceptability: 12 husbands refused to complete HCNS (Home Caregiver Need Survey) Measures the importance and satisfaction of the needs of caregivers Caregiver completes 90 items; 6 domains: information, household, patient care, personal, spiritual, and psychological Seven-point “Importance” subscale and seven-point “Satisfaction” subscale Lackey-Wingate model Statements from patients and home caregivers; Expert evaluation; Pilot test Psychological, patient care, personal and household Domains correlated with KPSS Overall α: 0.93, 0.98; Domains: α ranged from .85-.97 Detected changing caregiver needs at 3 time points Time: 30 min; Reading: 5th grade level; Acceptability: caregivers OK HCS-CF (Home Care Study- Caretaker Form) Assess attitude of terminally and chronically ill caretakers toward medical care of their patients Interview; patient may be able to complete 42 items; 2 domains: Satisfaction with care: availability, continuity, MD availability, MD competence, MD personality, MD communication, general satisfaction Preference for: home care, decision making Agreement with five-point Likert scale Based on scales by Zyranski and Ware; Pilot test Good discriminant validity Domains: α ranged from .50-.85 Time: N/A; Reading level: N/A; Acceptability: N/A Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� TABLE �-2 Continued Instrument Purpose and Administration Items and Domains Question Format Conceptual and Measurement Model Validity Reliability Responsiveness Burden Content Validity Construct Validity Internal Consistency Reproducibility FIN (Family Inventory of Needs) Measure needs of cancer patient’s family and extent needs are met Family completes 20 items, 1 domain Ten-point “importance” scale and met/ unmet check Fulfillment theory; factor analysis Literature; Items from original Critical Care Family Needs Inventory; Family review Correlated with FAMCARE Overall α for “importance” scale: 0.83 Time: “short”; Reading level: N/A; Acceptability: N/A FIN-H (Family Inventory of Needs- Husbands) Measure information needs of husbands of women with breast cancer Husband completes 30 items; 5 domains: surgical care needs, communication with MD, family relations, diagnosis/treatment specifics, husband’s involvement Five-point “Importance” subscale and three-point “Need Met” subscale Factor analysis Based on FIN Pilot test Overall α ranged from .90-.93; 73%-87% of items: item-total correlation 0.4-0.7 Importance subscale: r=0.82, Need Met subscale: r=.79 time: <24 hrs Time: 16-30 min; Reading level: N/A; Acceptability: 12 husbands refused to complete HCNS (Home Caregiver Need Survey) Measures the importance and satisfaction of the needs of caregivers Caregiver completes 90 items; 6 domains: information, household, patient care, personal, spiritual, and psychological Seven-point “Importance” subscale and seven-point “Satisfaction” subscale Lackey-Wingate model Statements from patients and home caregivers; Expert evaluation; Pilot test Psychological, patient care, personal and household Domains correlated with KPSS Overall α: 0.93, 0.98; Domains: α ranged from .85-.97 Detected changing caregiver needs at 3 time points Time: 30 min; Reading: 5th grade level; Acceptability: caregivers OK HCS-CF (Home Care Study- Caretaker Form) Assess attitude of terminally and chronically ill caretakers toward medical care of their patients Interview; patient may be able to complete 42 items; 2 domains: Satisfaction with care: availability, continuity, MD availability, MD competence, MD personality, MD communication, general satisfaction Preference for: home care, decision making Agreement with five-point Likert scale Based on scales by Zyranski and Ware; Pilot test Good discriminant validity Domains: α ranged from .50-.85 Time: N/A; Reading level: N/A; Acceptability: N/A continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT TABLE �-2 Continued Instrument Purpose and Administration Items and Domains Question Format Conceptual and Measurement Model Validity Reliability Responsiveness Burden Content Validity Construct Validity Internal Consistency Reproducibility NSS (Need Satisfaction Scale) Assess the intensity and satisfaction of the needs of bereaved families Family completes 9 items Five-point “Felt need” subscale and five-point “Met need” subscale Literature; Expert review Unmet needs correlated with overall satisfaction with care Overall α: 0.84; “Felt need” subscale: 0.74; “Met need” subscale: 0.84 Time: 15 min; Reading level: N/A; Acceptability: N/A Relative Relative ISNQ (Information and Support Needs Questionnaire) Assess information and support needs of women who have primary relative with breast cancer Self-complete 29 items; 2 domains: information and support Four-point “Importance” subscale and Four-point “Need Met” subscale Literature; Interviews Domains: α ranged from .92-.95 Time: 37 min; Reading level: “middle” class; Acceptability: “several” reported it didn’t apply NOTE: This table is from “Needs Assessment for Cancer Patients and Their Families.” Kuang- Yi Wen and David H. Gustafson, Health and Quality of Life Outcomes, 2004, © 2004 Wen and Gustafson; licensee BioMed Central Ltd. The electronic version of it is an Open Access article: verbatim copying and redistribution of the article are permitted in all media for any purpose, provided this notice is preserved along with the article’s original URL: http://www. hqlo.com/content//pdf/1477-7525-2-11 . Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� TABLE �-2 Continued Instrument Purpose and Administration Items and Domains Question Format Conceptual and Measurement Model Validity Reliability Responsiveness Burden Content Validity Construct Validity Internal Consistency Reproducibility NSS (Need Satisfaction Scale) Assess the intensity and satisfaction of the needs of bereaved families Family completes 9 items Five-point “Felt need” subscale and five-point “Met need” subscale Literature; Expert review Unmet needs correlated with overall satisfaction with care Overall α: 0.84; “Felt need” subscale: 0.74; “Met need” subscale: 0.84 Time: 15 min; Reading level: N/A; Acceptability: N/A Relative Relative ISNQ (Information and Support Needs Questionnaire) Assess information and support needs of women who have primary relative with breast cancer Self-complete 29 items; 2 domains: information and support Four-point “Importance” subscale and Four-point “Need Met” subscale Literature; Interviews Domains: α ranged from .92-.95 Time: 37 min; Reading level: “middle” class; Acceptability: “several” reported it didn’t apply NOTE: This table is from “Needs Assessment for Cancer Patients and Their Families.” Kuang- Yi Wen and David H. Gustafson, Health and Quality of Life Outcomes, 2004, © 2004 Wen and Gustafson; licensee BioMed Central Ltd. The electronic version of it is an Open Access article: verbatim copying and redistribution of the article are permitted in all media for any purpose, provided this notice is preserved along with the article’s original URL: http://www. hqlo.com/content//pdf/1477-7525-2-11 . Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT TABLE �-3 Comparison of Domain Item Distribution Across Needs Assessment Instruments (Wen and Gustafson, 2004) Instruments → CARES CARES- SF CPNS CPQ SCNS HCS- PF NEQ PNAT PNI PCNA PINQ DINA INM TINQ- BC PACA STAS NEST FAM CARE FIN FIN- H HCNS HCS- CF NSS ISNQ # Items → Domain ↓ 93-132 38-57 51 71 61 33 23 16 48 135 17 144 9 51 10 17 20 20 30 89 42 20 29 Pain 1 1 3 5 Symptom Ctrl 7 1 Physical 26 10 9 6 11 Cancer Shock 11 Psychological 44 17 16 22 5 5 • 30 Psychosocial 2 Spiritual 1 • 6 Insight 1 1 Sexuality 8 3 3 1 Personal • 1 • 11 20 Marital 18 6 Caregiving needs • 6 Family • 2 3 2 Social 5 • • 6 Communication 2 • 3 • Planning 1 Other Prof 2 6 14 Information 10 10 15 64 4 18 Diagnostic Info • 9 • 1 9 Treatment Info • 2 16 Investigative Info 7 Daily Living 7 Work 5 12 Household Activity Mgt Coping 16 Future Placemt 1 5 7 Sense of purpose • 2 Participation 3 3 8 MD Interaction 11 4 2 • 4 MD/Care Availability 8 6 16 MD Competence 4 4 Patient Care 8 8 4 Continuity of C 4 9 Home Care 4 1 Access to Care 4 Care delivery 35 2 20 Support 36 11 Financial 1 Help 9 8 Other 32 19 4 2 1 NOTE: • unclear numbers of items. SOURCE: This table is from “Needs Assessment for Cancer Patients and Their Families.” Kuang-Yi Wen and David H. Gustafson, Health and Quality of Life Outcomes, 2004, © 2004 Wen and Gustafson; licensee BioMed Central Ltd. The electronic version of it is an Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� TABLE �-3 Comparison of Domain Item Distribution Across Needs Assessment Instruments (Wen and Gustafson, 2004) Instruments → CARES CARES- SF CPNS CPQ SCNS HCS- PF NEQ PNAT PNI PCNA PINQ DINA INM TINQ- BC PACA STAS NEST FAM CARE FIN FIN- H HCNS HCS- CF NSS ISNQ # Items → Domain ↓ 93-132 38-57 51 71 61 33 23 16 48 135 17 144 9 51 10 17 20 20 30 89 42 20 29 Pain 1 1 3 5 Symptom Ctrl 7 1 Physical 26 10 9 6 11 Cancer Shock 11 Psychological 44 17 16 22 5 5 • 30 Psychosocial 2 Spiritual 1 • 6 Insight 1 1 Sexuality 8 3 3 1 Personal • 1 • 11 20 Marital 18 6 Caregiving needs • 6 Family • 2 3 2 Social 5 • • 6 Communication 2 • 3 • Planning 1 Other Prof 2 6 14 Information 10 10 15 64 4 18 Diagnostic Info • 9 • 1 9 Treatment Info • 2 16 Investigative Info 7 Daily Living 7 Work 5 12 Household Activity Mgt Coping 16 Future Placemt 1 5 7 Sense of purpose • 2 Participation 3 3 8 MD Interaction 11 4 2 • 4 MD/Care Availability 8 6 16 MD Competence 4 4 Patient Care 8 8 4 Continuity of C 4 9 Home Care 4 1 Access to Care 4 Care delivery 35 2 20 Support 36 11 Financial 1 Help 9 8 Other 32 19 4 2 1 Open Access article: verbatim copying and redistribution of the article are permitted in all media for any purpose, provided this notice is preserved along with the article’s original URL: http://www.hqlo.com/content//pdf/1477-7525-2-11 . Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�0 CANCER CARE FOR THE WHOLE PATIENT Linking Patients to Psychosocial Health Services Several mechanisms used to link patients with psychosocial health services delivered by health and human service providers have empirical support, although the strength of this support varies. These mechanisms include structured referral arrangements and formal agreements with exter- nal providers, case management, and collocation and clinical integration of services. Use of care/system navigators is also being studied for its effective- ness in linking patients with needed services. Structured Referral Although referral to other organizational or individual providers is a common mechanism for linking individuals with psychosocial health services (see the models in Table 4-1, examples in Chapter 5, and services delivered by referred organizations in Tables 3-2 and 3-3 in Chapter 3), there has been little study of the general effectiveness of such referrals. Most studies of referral have addressed referrals between physicians. These and one Australian study of referrals of cancer patients to psychosocial services indicate high rates of failure to connect individuals to the referred providers, frequent failure of the referred individuals to accept the referred services, and failure to track the outcomes of referrals (Bickell and Young, 2001; Curry et al., 2002; Grimshaw et al., 2006). These findings are consistent with the low ranking accorded referral by others studying practices aimed at achieving care coordination (Friedmann et al., 2000) and the finding of low success of referral by itself in linking cancer patients to needed psy- chosocial health services in one study of health maintenance organizations (HMOs) (Eakin and Strycker, 2001). And oncology nurses participating in focus groups pertaining to the implementation of survivorship care plans stated that they do not typically have formalized mechanisms for making referrals to social work services (IOM, 2007). On the other hand, the high utilization of services provided by such organizations as the American Cancer Society (which do not themselves provide medical services and thus depend in part on referrals for their clients) indicates that referrals can suc- cessfully link patients to needed services. The few studies of how to make referrals more effective in linking patients with needed services have addressed referrals from primary to spe- cialty care. The results of these studies indicate that using structured referral forms and educating referrers are most likely to improve the referral process (Grimshaw et al., 2006). Having formal agreements in place with those to whom referrals are made can also help (Friedmann et al., 2000). Tracking or following up on the actual receipt of referred services in cancer care is also recommended (Bickell and Young, 2001; Curry et al., 2002). Referring patients to external providers is likely to continue to be a Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�1 primary mechanism for linking patients with needed psychosocial health services because it requires fewer organizational and physical plant re- sources than offering all psychosocial services on site. To conserve both psychosocial health services and the personnel and resources needed to make referrals, however, it is important for providers to implement ap- proaches for doing so efficiently and effectively. This is an area that would benefit from further study. Case Management13 Case management consists of a variety of activities necessary to coordi- nate some or all of the health-related care needed by patients (Zwarenstein et al., 2004). Although these activities often vary with the severity of the ill- ness, the needs of the individual, and the specific model of case management employed (Gilbody et al., 2003; Marshall et al., 2004), case management services that address psychosocial health needs typically include assess- ment of the patient’s need for supportive services; individual care planning, referral, and connection of the patient with other necessary services and supports; ongoing monitoring of the patient’s care plan; advocacy and education; and monitoring of the patient’s symptoms. These activities can be performed by an appointed individual or a group. A review by the Cochrane Collaboration of the effectiveness of case management across various diseases and health conditions is under way; as of this writing, results are not yet available.14 However, a qualitative review conducted for the Medicare program of coordinated care programs most effective in reducing hospital admission, total medical costs, or both across a variety of diagnoses identified case management as one of two effective interventions (Chen et al., 2000). Disease-specific systematic re- views and randomized controlled studies of case management in chronic conditions other than cancer, such as HIV/AIDS (Handford et al., 2006), mental illnesses (Ziguras et al., 2000, 2002), and diabetes (Norris et al., 2002), generally have shown that a variety of forms of case management have positive impacts on health outcomes. A meta-analysis of 37 random- ized controlled trials of collaborative care for the treatment of depression in primary care found that case management is a key determinant of effec- tive treatment of depression (Gilbody et al., 2006b). However, there have 13 The discussion in this section distinguishes between case management provided by a resource person working with both the patient and the involved clinicians and disease man- agement programs. The latter often involve transfer of the overall medical and related health care management of a patient’s specific disease to a separate organization or program, often through a contract. Disease management programs can also offer case management services by an individual. 14 Personal communication, Merrick Zwarenstein, February 7, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�2 CANCER CARE FOR THE WHOLE PATIENT been few experimental studies of case management in cancer care, and their results vary widely. McCorkle and colleagues (2000) studied the effect of case manage- ment by advanced practice nurses on older postsurgical patients with solid tumors. The intervention consisted of home visits and telephone calls over a 4-week period that involved assessment, information sharing, and skills training for patients and family caregivers. The nurse-managed patients experienced better 2-year survival rates, confined to the group with later- stage disease (67 vs. 40 percent 2-year survival). Another randomized trial examined the effect of nurse case management on women with breast cancer. The results suggest that case management by an oncology nurse for the 12 months following diagnosis increased the likelihood that patients participated in decision making and received evidence-based treatment (Goodwin et al., 2003). Results of other randomized trials in England and Australia, however, suggest that much remains to be learned about the ef- fectiveness of the various activities of nurse case managers in cancer care (McLachlan et al., 2001). One study of the effects of a nurse coordinator intervention with terminally ill cancer patients found no significant dif- ferences in symptoms, psychiatric morbidity, or care satisfaction between nurse-managed and control patients and families (Addington-Hall et al., 1992). In an analysis of the health care utilization and cost impacts of the nurse coordinator intervention, however, Raftery and colleagues (1996) found significant reductions in use of hospital and home care with care management. The Australian investigators studied 450 Cancer Institute out- patients with multiple cancers and stages of disease. All patients completed a baseline computerized assessment that included informational, psycho- social, and physical needs; functioning, symptoms, and quality of life; and depressive symptoms. For patients in the intervention group, a nurse coor- dinator reviewed the assessment results and formulated an individualized care plan in accordance with preset psychosocial guidelines. In addition, a summary of the assessment was made available to the physician seeing the patient that day. The nurses linked patients with needed services, monitored patients and families for changing needs, and attempted to coordinate the activities of the clinical team in support of the management plan. Although counseling was frequently recommended, fewer than 30 percent of patients accepted this recommendation. No significant improvements in satisfaction of needs, psychosocial functioning, or quality of life were found. In summary, case management has demonstrated effectiveness in the care of high-risk patients with major chronic illnesses, but its role in can- cer care remains uncertain. Despite this uncertainty, a number of health plans have implemented case management activities for patients with cancer (AHIP, 2007). Case management directed at increasing adherence to evidence-based treatment (Goodwin et al., 2003) and increasing the Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� self-management skills of patients and family caregivers (McCorkle et al., 2000) may well be effective. On-site Collocation and Clinical Integration of Ser�ices Multiple studies of mental health care have found that same-site de- livery of mental health and primary care is effective in linking patients to the collocated services (Druss et al., 2001; Samet et al., 2001) and can improve treatment outcomes (Unutzer et al., 2001; Weisner et al., 2001). In a 1995 study of a nationally representative sample of outpatient drug use treatment units, same-site delivery of services was more effective than formal arrangements with external providers, referral agreements, or case management in ensuring that patients would utilize necessary services (a first step in collaborative care) (Friedmann et al., 2000). Integrating psychosocial health care into medical care settings facili- tates patient follow-through on referrals, allows for face-to-face verbal communication in addition to or as an alternative to communicating in writing, and allows for informal sharing of the views of different disciplines and easy exchange of expertise (Pincus, 2003). Studies of care collabora- tion also have shown that physical proximity of would-be collaborators facilitates collaboration (IOM, 2004). The opportunities for face-to-face communication provided by collo- cated services are important because multiple studies have identified effec- tive communication between providers as a key feature of care collaboration (Baggs and Schmitt, 1988; Shortell et al., 1994; Schmitt, 2001). “Effective” communication is described as frequent and timely (Shortell et al., 1994; Gittell et al., 2000),15 and is characterized by discussion with contributions by all parties, active listening, openness, a willingness to consider other ideas and ask for opinions, questioning (Baggs and Schmitt, 1997; Shortell et al., 1994), and the free flow of information among participants. This type of communication is less easily achieved through electronic, mail, and telephone communications. Nonetheless, when physical collocation and integration of services is not feasible, other strategies for linking patients with needed services (e.g., through formal referral arrangements or use of case managers) can be used. Care/System Na�igators Use of care/system navigators, as well as individual patient advocates, is similar to case management and may also help link patients to needed psychosocial services. Such programs in cancer care were developed initially 15 As well as accurate, understandable, and satisfying. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT to help low-income patients participate in screening for the detection of cancer and aid those with suspicious screening findings in gaining access to diagnostic and treatment services. Initially, patient navigators tended to be local community residents without professional credentials, but more recently some have proposed that nurses, social workers, and other health workers play a navigator role. This variation in the background of the navigator relates to differences in role expectations. While all navigator programs focus on helping patients overcome barriers to receiving effective services, some also include patient education and patient advocacy roles (Dohan and Schrag, 2005). Evidence to date for the effectiveness of patient navigator programs is confined largely to their effectiveness in getting patients screened for the detection of cancer. One of the few randomized trials of this type of patient navigation (Jandorf et al., 2005) found that patient navigators increased the prevalence of screening for colorectal cancer. Results of other quasi- and nonexperimental evaluations suggest that such programs increase screening rates and may modestly increase the proportion of patients detected with early-stage disease (Dohan and Schrag, 2005). Some qualitative evidence suggests that navigators help patients overcome barriers, both logistical (e.g., transportation) and attitudinal, although their role in helping patients once diagnosed has received little study. However, a recent randomized trial evaluating the impact of a patient navigation program on follow-through with diagnosis among women with abnormal mammograms found that the intervention significantly increased the percentage of women achieving diagnostic resolution (Ell et al., 2007). In summary, patient navigator programs appear to help low-income patients participate in cancer screening and perhaps diagnosis. Whether such programs can also be effective in linking a diverse patient population to appropriate psychosocial services and how they differ from case manage- ment functions described above remains uncertain, however. The American Cancer Society (ACS) and NCI have both launched major initiatives to implement and evaluate patient navigator programs. The ACS program involves placing trained ACS staff in strategically selected health care fa- cilities with oncology treatment services to provide adult cancer patients and families with personalized and reliable information about the disease, referral to ACS resources, and timely follow-up. NCI has launched a Pa- tient Navigation Research Program to address unequal access to standard oncology care by developing interventions designed to reduce the time to delivery of standard cancer services, cancer diagnosis, and treatment after an abnormal finding. Patient navigators in this program will assist patients and their families throughout the period of care by, for example, arranging various forms of financial support, scheduling transportation to appoint- ments, and organizing child care during appointments. ACS is working Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� with NCI on an evaluation of these patient navigator programs.16 NCI’s Community Cancer Centers Pilot Program includes patient navigators as one facet of these new centers (NCI, undated). Supporting Patients in Managing Their Illness Illness self-management is defined as an individual’s “ability to man- age the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition” (Barlow et al., 2002:178). Effective approaches for providing this support are reviewed in Chapter 3. Given the diverse physical, psychological, and social challenges posed by cancer, its treatment, and its sequelae, providing patients and their caregivers with knowledge, skills, abilities, and support in managing the psychosocial and biomedical dimensions of their illness and health is critical to effective health care and health outcomes for these patients. Coordinating Psychosocial and Biomedical Health Care A 2007 systematic review of systematic reviews of the effectiveness of care coordination, conducted by the Agency for Healthcare Research and Quality (AHRQ) (McDonald et al., 2007), found more than 40 definitions of care coordination and related terminology and 20 different coordination interventions.17 The report provides the following working definition of care coordination: Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities, and is often man- aged by the exchange of information among participants responsible for different aspects of care. (McDonald et al., 2007:v) The AHRQ review found that the most common care coordination mechanisms addressed in the literature are multidisciplinary team care, case management, and disease management (the last of which is defined variably or not at all). The review found the strongest evidence for the effectiveness 16 Personal communication, Nancy Single, PhD, ACS, September 11, 2006. 17 Case management, collaborative care, disease management, geriatric assessment/evaluation and management, integrated programs, interprofessional education, key worker assigned coordination function, multidisciplinary clinic, multidisciplinary program (comprehensive), multidisciplinary teams, navigation program, nurse-doctor collaboration, organized specialty clinic, organized cooperation, shared care, specialist outreach clinic, assertive community treat- ment, team coordination, team coordination and delivery, and system-level interventions. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT of coordination using a variety of strategies for individuals with congestive heart failure, diabetes, severe mental illness, a recent stroke, or depression, although the reviewers noted that it was not possible to identify the key component(s) of the care coordination interventions that were responsible for their effectiveness. Significantly, the review found that when systematic reviews addressed “other clinical areas such as rheumatoid arthritis, pain management, asthma, and cancer [emphasis added], there is insufficient evidence to draw firm conclusions” (McDonald et al., 2007:7). Nonethe- less, until research provides better direction with respect to coordination within the context of cancer care, clinicians caring for these patients and their families will need to implement mechanisms for coordinating care based on the findings of care coordination studies for other diseases and for populations with varied conditions and on the limited studies addressing care coordination in cancer. Cancer care typically requires multiple professional caregivers to pro- vide accurate diagnosis and staging, surgical treatment, adjuvant or de- finitive chemotherapy and/or radiotherapy, and ongoing management of comorbid problems, as well as psychosocial support. The multiple hand- offs involved in typical cancer care generate opportunities for confusion, redundancy, breakdowns in communication, and medical errors. Patients and families, with variable help from their clinicians, must often take the initiative to ensure that relevant information is shared across providers and that care is coordinated. The psychosocial problems described earlier, as well as the complexities of oncology care, can make it difficult if not impos- sible for patients and caregivers to carry out this role. This difficulty is ex- acerbated by the fact that care coordination as a psychosocial intervention must fulfill a dual function: coordination of psychosocial health services with biomedical services, and coordination of biomedical care provided by multiple clinicians. Consistent with the findings of the AHRQ evidence review, both types of care coordination are likely to be achievable in various ways, including the activities described in the preceding section that are effective in linking patients to needed psychosocial health services, such as case management and collocated, clinically integrated services. A study of the efforts of hospitals and cancer centers to coordinate the care of patients with breast cancer also found the use of regularly scheduled multidisciplinary meetings and patient support personnel, such as patient educators and care naviga- tors (Bickell and Young, 2001). In a randomized controlled trial of the integration of medical care with mental health services, same-site location, common charting, enhanced channels of communication (including joint meetings and e-mail), and in-person contact were found to facilitate the de- velopment of common goals and the sharing of information between medi- cal and mental health providers (Druss et al., 2001). Other coordination Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� mechanisms likely to impact psychosocial care and outcomes include the use of guidelines and protocols that incorporate attention to psychosocial issues; patient support, such as educational, navigation, or case manage- ment interventions, to assist patients in having their needs met; and use of information systems to help ensure that providers and patients have the information they need when they need it to facilitate care (Bickell and Young, 2001). Consistent with these findings, Ouwens and colleagues’ (2005) analysis of systematic reviews of programs for the chronically ill identified program components associated with positive effects on patient-reported outcomes, such as patients’ functional health status, satisfaction with care, and hos- pitalization. These components included, among others, structured clinical follow-up, often supported by case management; multidisciplinary team care facilitated by regular communication and multidisciplinary care plans in accordance with evidence-based protocols or guidelines; and feedback, reminders, and education for health professionals. The use of multidisciplinary teams has been found to be effective in reducing mortality and hospitalizations for individuals with heart failure (McAlister et al., 2004). Such teams have been promoted by the Brit- ish National Health Service and are widely implemented in the United Kingdom. In a comprehensive assessment of the literature and the U.K. experience with multidisciplinary teams in cancer care, however, Fleissig and colleagues (2006:935) conclude that “research showing the effective- ness of MDT [multidisciplinary teams] working is scarce.” Houssami and Sainsbury’s (2006) review of the literature on multidisciplinary approaches for patients with breast cancer found 15 studies, none of which was ex- perimental. While there was some suggestion of better survival, this was attributed to characteristics of the hospital and surgeons (especially patient volume) rather than to the functioning of teams. Psychosocial outcomes were not included in this review. In addition to the low-tech approach of having on-site nursing staff or other personnel provide care coordination, the high-tech approach of using shared patient records can be used to coordinate patient care. Electronic health records (EHRs) are an important mechanism for sharing patient in- formation among collaborating providers and have been highlighted as one of the essential components of the developing National Health Information Infrastructure (NHII). Although sharing of patient information maintained in paper-based records can take place, the electronic capture and storage of patient information is a more thorough and efficient mechanism for timely access to needed information by the many providers serving a pa- tient. EHRs allow (1) the longitudinal collection of electronic information pertaining to an individual’s health and health care, (2) immediate elec- tronic access—by authorized users only—to person- and population-level Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 1�� CANCER CARE FOR THE WHOLE PATIENT information, (3) provision of knowledge and decision support to enhance the quality of patient care, and (4) support for efficient health care deliv- ery (IOM, 2003). Given these advantages, NCI is requiring organizations participating in its Community Cancer Centers Program to be able to build information technology capability, including electronic patient re- cords (Niederhuber, 2006). Indeed, although still a minority, hospitals and ambulatory practices are increasingly investing in EHRs; however, these investments typically are being made by larger facilities, creating what is referred to as the “adoption gap” between large and small organizations (Brailer and Terasawa, 2003). Whereas EHRs function to serve the information needs of health care professionals, personal health records (PHRs) generally focus on the collec- tion of information to help individual patients better manage their health care. Early forms of PHRs differed in size, format, and content and were paper-based, relying on manual collection of information from patients and clinicians. Patients’ or caregivers’ actual use of these PHRs varied depend- ing on their intended use and perceived value. Although patient-reported levels of satisfaction with PHRs were consistently high (83–93 percent) in several studies involving patients with cancer and diabetes and women with children (Drury et al., 1996; Davis and Bridgford, 2001; Lecouturier et al., 2002; Hampshire et al., 2004), rates of actual use ranged from 37 to 97 percent (Drury et al., 1996, 2000; Davis and Bridgford, 2001; Williams et al., 2001; Lecouturier et al., 2002; Hampshire et al., 2004; Walton et al., 2006). Providers’ level of satisfaction with using information from PHRs also varied (Drury et al., 2000; Davis and Bridgford, 2001; Williams et al., 2001; Lecouturier et al., 2002, Hampshire et al., 2004), and the few studies examining improvements in clinical status as a result of the use of PHRs found no significant differences (Drury et al., 2000; Williams et al., 2001). Electronic versions of PHRs are becoming increasingly available as a feature offered by national health plans. These PHRs generally contain medical and pharmacy claims information and medical information librar- ies, and have areas for patients to record laboratory results and various health status findings (e.g., blood pressure, weight, height for children) and to collect health risk appraisal information. The committee could find no studies of the effectiveness of electronic PHRs. Research is needed to learn more about their potential value in linking cancer patients to psychosocial health services; informing their medical care; and perhaps most important, supporting them in managing their illness. Consistent with the wide variation in the care coordination mechanisms reviewed above, the AHRQ review of care coordination concluded that the effectiveness of care coordination mechanisms will most likely depend upon appropriately matching the type(s) of care coordination mechanism(s) used with the needs of patients, although “more conceptual, empirical, and Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 1�� experimental research is required to explore this hypothesis” (McDonald et al., 2007:vi). In the interim, clinical practices should adopt approaches to care coordination that best address the needs of their patient population and fit their organizational and work design characteristics. Following Up on Care Delivery Patient follow-up is present in all of the models listed in Table 4-1 and has been cited in several reviews identifying effective interventions for im- proving health care processes and outcomes (Chen et al., 2000; Stuck et al., 2002). Follow-up can take place in a variety of ways, including telephone calls to patients to monitor their status (Brown et al., 2004b; Gilbody et al., 2006b; Kornblith et al., 2006), home visits by care managers or other personnel, as part of a scheduled outpatient visit, or through Internet or web-based technology. Follow-up involves two discrete activities. First is the determination of which services, if any, the patient used, any problems encountered, and satisfaction with services provided. Second is rescreening and assessment to identify new or unmet needs that are then addressed. A RECOMMENDED STANDARD FOR CARE From the evidence presented above, the committee concludes that enough is now known to support the adoption of a standard of care for the delivery of psychosocial health services in cancer care. The committee recommends the following: Recommendation: The standard of care. All parties establishing or using standards for the quality of cancer care should adopt the follow- ing as a standard: All cancer care should ensure the provision of appropriate psycho- social health services by • facilitating effective communication between patients and care providers;18 • identifying each patient’s psychosocial health needs; • designing and implementing a plan that – links the patient with needed psychosocial services, – coordinates biomedical and psychosocial care, 18 Although the language of this standard refers only to patients, the standard should be taken as referring to both patients and families when the patient is a child, has family members involved in providing care, or simply desires the involvement of family members. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 200 CANCER CARE FOR THE WHOLE PATIENT – engages and supports patients in managing their illness and health; and • systematically following up on, reevaluating, and adjusting plans. Multiple organizations could significantly influence adherence to this standard of care. NCI, as the nation’s leader in cancer care, could include requirements for addressing psychosocial health needs in all of its protocols; standards for designating clinical or comprehensive cancer centers; and other programs, such as its Quality of Cancer Care Initiative. NCI also could work with other organizations in the public and private sectors to incorporate psychosocial health care into existing cancer care initiatives, such as the Centers for Disease Control and Prevention’s National Compre- hensive Cancer Control Program and the Veterans Health Administration’s National Cancer Strategy. Private-sector leaders in cancer care could do the same. For example, standards-setting organizations such as NCCN and the American College of Surgeons’ Commission on Cancer could incorporate the committee’s recommended standard and its components into their own standards. Funders of leading initiatives to improve the quality of cancer care also could incorporate this standard into their programs. Because individual clinical practices vary by their setting and patient population as well as by available resources in their practice and local com- munity, how individual health care practices implement the standard of care and the level at which it is done will likely vary. Nevertheless, it is possible for all providers to meet this standard in some way. Examples of how some cancer care providers are doing so today and suggestions as to how others could do so, even with limited resources, are described in the next chapter. What organizations implementing this standard today have in common is attention to how care is delivered at their practice settings and a willing- ness to redesign care processes when needed—characteristics that require strong leadership, well known as a critical factor in the success of any major change initiative or quality improvement effort (Burns, 1978; Bodenheimer et al., 2004; National Institute of Standards and Technology, 2007). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 201 ANNEx �-1 EMPIRICALLY VALIDATED MODELS OF AND CLINICAL PRACTICE GUIDELINES FOR THE EFFECTIVE DELIVERY OF PSYCHOSOCIAL HEALTH SERVICES Building Health Systems for People with Chronic Illnesses Building Health Systems for People with Chronic Illnesses was a national initiative, funded by The Robert Wood Johnson Foundation from 1993 to 2002, aimed at improving the delivery of biomedical, mental health, and social support services for people with disabilities and chronic conditions requiring long-term care.19 A qualitative analysis of the five programs most successful in integrating the delivery of all three types of care identified the following as key elements in achieving such outcomes as improved health, reduced use of the emergency room and hospital inpatient and residential mental health care, and reduced or contained costs: (1) screening, needs as- sessment, and care planning; (2) consumer participation, decision support, and self-determination in care planning; and (3) mechanisms for linking biomedical and psychosocial health services, such as use of interdisciplinary teams and case management (Palmer and Somers, 2005). Chronic Care Model The Chronic Care Model is intended to improve the health outcomes of people with chronic illness by creating informed, activated patients who can interact effectively with prepared, proactive health care teams (Bodenheimer et al., 2002). To this end, the model prescribes six key ac- tions for health care organizations serving individuals with chronic illness: (1) supporting patients in learning about and managing their illnesses (illness self-management); (2) helping patients use community resources to manage their health; (3) redesigning patient care by, for example, rede- fining roles of care team members, offering case management services for complex cases, and providing regular follow-up of all patients; (4) using clinical information systems to support individual patient care planning and coordination of care and to otherwise facilitate efficient and effective care; 19 “Long-term care” refers to the “wide range of medical, nursing, custodial, social, and com- munity services provided over an extended period of time for the chronically ill,” especially for individuals with developmental disabilities, traumatic injuries, or degenerative disease or older adults with declines in mobility and cognitive function (Palmer and Somers, 2005:4). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 202 CANCER CARE FOR THE WHOLE PATIENT (5) using decision support (for patients as well as clinicians) to promote evi- dence-based care; and (6) creating overarching organizational mechanisms to promote safe, high-quality care (ICIC, 2007). These elements were devel- oped from the findings of a review of the published literature on promising strategies for management of chronic illness. They were refined as a result of input from a large panel of national experts, and subsequently tested nationally across various health care settings through The Robert Wood Johnson Foundation’s Improving Chronic Illness Care program. Components of the Chronic Care Model have been associated with improved health outcomes in a number of studies (Bodenheimer et al., 2002). In conjunction with the Robert Wood Johnson program, the Ameri- can Association of Medical Colleges launched an Academic Chronic Care Collaborative (ACCC) to improve care of persons with chronic conditions who receive their care in academic health systems and to ensure that clinical education occurs in an exemplary environment. Teams from 22 academic settings extensively redesigned their care strategies using the Chronic Care Model for persons with diabetes, asthma, and chronic obstructive pul- monary disease and achieved improvements in patient care and outcomes (AAMC, 2006). A RAND Corporation evaluation of the implementation of the Chronic Care Model in four quality improvement collaboratives sponsored by the Institute for Healthcare Improvement also found that implementation of the model for patients with diabetes, congestive heart failure, and asthma improved health care, as well as some dimensions of patients’ illness self-management and health.20 RAND’s before-and-after study included 2,032 intervention patients and 1,837 control patients at 30 participating organizations. Improvements were seen in measures of techni- cal quality of care, such as blood glucose control and use of appropriate heart disease medications. Improved patient outcomes included reductions in emergency room visits and hospital admissions for those with congestive heart failure, improvements in health-related quality of life for patients with asthma, and reductions in risk factors for heart disease (blood pressure, cholesterol, blood glucose levels) for individuals with diabetes.21 Clinical Practice Guidelines for Distress Management The National Comprehensive Cancer Network (NCCN), an alliance of 21 leading cancer centers in the United States, offers a number of resources for improving health care provided to individuals with cancer (NCCN, 2007b). These resources include clinical practice guidelines, one set of 20 Although improvements were not detected in all outcomes. 21 Unpublished data from Emmett B. Keeler, PhD, RAND Corporation, February 20, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 20� which addresses the management of distress (NCCN, 2007a). NCCN’s consensus-based distress guidelines call for (1) screening of all patients at their initial visit, at appropriate intervals, and as clinically indicated to de- termine the level and nature of distress; (2) further evaluation, triage, and referral of patients with significant distress to appropriate resources for care; and (3) education of patients and their families about distress and its management (NCCN, 2006). Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer Australia’s Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer were developed from a systematic review of research evidence. Although most of the guidelines address how to care for individ- ual symptoms, such as anxiety, or practical problems, such as financial or work-related concerns, the guidelines also recommend certain cross-cutting activities to be carried out in treatment settings. These activities include pro- viding patients with information to support their decision making, screen- ing all patients for clinically significant anxiety and depression, ensuring continuity of care through the designation of a person responsible for care coordination, and developing referral pathways and networks (National Breast Cancer Centre and National Cancer Control Initiative, 2003). Improving Supportive and Palliative Care for Adults with Cancer The National Institute for Clinical Excellence (NICE) in the United Kingdom has promulgated guidance on improving supportive and palliative care for adults with cancer. The specific model of care delivery put forth in this guidance is difficult to generalize to the United States because it is based on an infrastructure for cancer care specific to the United Kingdom, such as designated Cancer Networks22 for specific geographic areas charged with delivering components of a comprehensive National Cancer Plan. However, NICE’s guidance recommends the performance of certain generic activities as part of its model for delivering supportive and palliative services, includ- ing assessment of patients’ psychological, social, spiritual, and financial support needs alongside an assessment of physical needs; promotion of continuity and coordination of care through such mechanisms as multidis- ciplinary teams and interprofessional communication strategies; systems to support patients and their caregivers in participating in care; provision of 22 Cancer Networks are explicit partnership arrangements among care providers in local health and social service organizations and the voluntary sector. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 20� CANCER CARE FOR THE WHOLE PATIENT patient information; and explicit partnerships between various agencies to ensure access to and receipt of needed services (NICE, 2004). Models for Treating Depression in Primary Care An estimated 5–9 percent of patients in primary care settings meet cri- teria for having major depression (Pignone et al., 2002), and many people with depression are treated in primary care as opposed to mental health settings (Kessler et al., 2005). In addition to its direct effects on health and well-being, depression affects the utilization of and adherence to treatment for general medical conditions (discussed in Chapter 2). Although treatment of depression does not encompass all psychosocial health services, problems encountered in providing high-quality mental health care for depression in primary care settings are similar to problems encountered in detecting and managing the broader array of psychosocial health problems seen in on- cology settings. Both situations involve an attempt to provide for specialty services in an environment not intended primarily for the delivery of those services. Models for ensuring care for depression in primary care settings have been developed and tested through research and a number of major initiatives. These models can inform strategies for delivering the broader array of psychosocial health services. Collaborati�e Care Model Although the term “collaborative care” is used to refer to a variety of types of interventions, one model of collaborative care developed by Katon and colleagues that has been tested in randomized controlled trials consists of a systematic approach to the structured involvement of mental health specialists in primary care. This approach employs (1) a negotiated definition of the clinical problem in terms that both patient and physician understand; (2) joint development of a care plan with goals, targets, and implementation strategies; (3) provision of support for self-management training and cognitive and behavioral change; and (4) active sustained follow-up using visits, phone calls, e-mail, and web-based monitoring and decision-support systems (Katon, 2003). In an initial randomized controlled trial of this intervention (supplemented by increased frequency of primary care visits in the first 6 weeks of treatment and scheduled visits with psychi- atrists) involving 199 patients with depression seen at a primary care clinic over a 12-month period, intervention patients with major depression (but not those with minor depression) showed significantly greater improvement in symptoms than patients who received usual care (Katon et al., 1995). These findings were repeated in successive trials (Katon et al., 1996, 1999). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 20� In a pilot study, collaborative care also has been found effective in treating low-income Latinas with cancer (Dwight-Johnson et al., 2005). Three Component Model (�CM™) of the MacArthur Initiati�e on Depression and Primary Care Based on a review of research findings, the John D. and Catherine T. MacArthur Foundation Initiative on Depression and Primary Care devel- oped a Three Component Model (3CM™) in which the primary care clini- cian, a care manager, and a mental health specialist collaborate with the patient and with each other in providing care. Primary care processes also are reengineered to promote illness self-management, quantitative moni- toring of the response to care, and modification of treatment as needed. Care processes include screening and assessment using standardized tools to identify the target population (patients with depression), patient educa- tion and engagement in shared decision making, use of a designated case manager to provide telephone support for the depressed patient and peri- odic feedback to the clinician on the patient’s response to treatment, and formal linkages with mental health specialists (Anonymous, 2004, 2006). A randomized controlled trial of this model in three medical groups and two health plans in the United States involving 60 affiliated primary care practices and 405 patients demonstrated significantly reduced symptoms of depression and increased remission rates compared with usual treatment (Dietrich et al., 2004). 3CM™ has been recommended as an approach for ensuring comprehensive survivorship care to cancer patients through “shared care” collaborations between specialist and primary care clinicians (Oeffinger and McCabe, 2006). Project IMPACT Collaborati�e Care Model Another model of care for delivering psychosocial health services was developed by a national panel of experts for the Improving Mood— Promoting Access to Collaborative Treatment for Late-Life Depression (IMPACT) project. This model consists of systematic assessment to de- termine a diagnosis; collaboration among patients and primary care and specialty providers to define the problem, develop a therapeutic alliance, and formulate a personalized treatment plan; follow-up and monitoring of treatment outcomes by a case manager; and use of protocols for the involvement of consultation or greater involvement in care by specialists. In a randomized controlled trial of the IMPACT project at 18 primary care clinics associated with eight health care organizations in five states with ethnically and socioeconomically diverse patients, patients with depression Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 20� CANCER CARE FOR THE WHOLE PATIENT treated according to the IMPACT model, compared with those receiving usual care, were significantly more likely to receive treatment for their depression at all follow-up periods; report greater satisfaction with their care; have significantly lower scores for depression; have a higher rate of complete remission of depression; experience less health-related impairment in work, family, and social functioning; and report better overall quality of life (Unutzer et al., 2001, 2002). Partners in Care Partners in Care was a quality improvement intervention for depres- sion care conducted from 1995 to 2000 in 46 primary care clinics within six diverse, nonacademic managed care plans in the western, midwestern, and eastern United States. The study included two programs: one directed at improving depression care using medications and the other at resources to support psychotherapy. Along with quality improvement techniques for changing care delivery (e.g., education of clinical staff in evidence-based depression care), both programs included (1) proactive case detection and clinical assessment; (2) activation of patients to promote knowledge about their condition and motivation to follow treatment regimens; (3) care plan- ning and case management; (4) formal mechanisms for ongoing, effective collaboration between primary care providers and mental health specialists; and (5) follow-up. The two programs proved to be about equally successful. A group-level, randomized controlled trial of the quality improvement in- terventions found increased rates of appropriate care, decreased symptoms of probable mental illness, and increased health-related quality of life in the intervention group compared with the group receiving usual care (Wells et al., 2000, 2004; RAND Corporation, 2007). Promoting Excellence in End-of-Life Care Program Between 1998 and 2004, The Robert Wood Johnson Foundation funded 22 demonstration projects aimed at developing innovative models for deliv- ering palliative care to people with progressive, life-threatening conditions. Projects in the Promoting Excellence in End-of-Life Care Program varied greatly with respect to their target populations (e.g., pediatric patients, per- sons with serious mental illness, prison inmates, military veterans, renal di- alysis patients, Native Americans, Native Alaskans, African Americans, and inner-city medically underserved populations), geographic areas and settings in which they were located (urban, rural, and frontier settings; integrated health systems; hospitals; outpatient clinics; cancer centers; nursing homes; renal dialysis clinics; inner-city public health and safety net systems; and prisons), and the ways in which the delivery of palliative care was organized. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES 20� Because each project conducted its own evaluation using different methods and metrics, it was not possible to report outcomes of the program as a whole. However, a qualitative review found that despite their differences, all projects had certain key processes in common: comprehensive assessment of physical, psychosocial, and spiritual domains; interdisciplinary care; care planning; regular communication among providers, patients, and families; care management to achieve coordinated care; ongoing monitoring; and patient and family education. 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Cochrane Database of Systematic Re�iews (1). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 21� 5 Implementing the Standard of Care CHAPTER SUMMARY Chapter � put forth a model (standard of care) for addressing psy- chosocial health needs. This chapter presents real-life illustrations of how this standard is already being implemented by some oncology practices and can be implemented by others, illustrating the feasibility of meeting the standard of care in situations with �arying le�els of resources. Patients diagnosed with cancer are treated by many different types of clinicians across all phases of their cancer care. Some of these clinicians specialize in oncology; others, such as primary care physicians and gen- eral surgeons, ha�e a patient population that is more heterogeneous with respect to diagnosis. The committee belie�es that all clinicians pro�iding care for patients with cancer should attend to psychosocial health needs as part of their practice, but that oncologists can and should lead the way in addressing these needs. The committee therefore recommends that all pro�iders of cancer care institute reliable processes to meet the standard of psychosocial health care. The National Cancer Institute (NCI), organiza- tions setting standards for cancer care, and consumer ad�ocacy organiza- tions should promote these efforts by incorporating the recommended standard of care into their agendas, protocols, policies, and standards. NCI, the Centers for Medicare & Medicaid Ser�ices, and the Agency for Healthcare Research and Quality, indi�idually or together, should conduct a program designed to demonstrate additional approaches to meeting the standard of care in different geographic areas and care settings, with more �ulnerable populations, and in locations with �arying resources. Cancer treatment is delivered in a variety of settings, including, for example, the practices of medical oncologists; primary care providers; Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 220 CANCER CARE FOR THE WHOLE PATIENT surgeons; radiologists; and other specialists, such as hematologists and urol- ogists (see Table 5-1).1 As stated in Chapter 4, the committee believes that the delivery of psychosocial health services should occur from diagnosis through all stages of the illness, and therefore, the standard for delivering psychosocial health care articulated in Chapter 4 should guide the activities of all clinicians delivering cancer care. Nonetheless, as adult and pediatric oncologists are recognized specialists in the delivery of cancer care, they should lead the way in implementing this standard of care. This chapter focuses on how they can do so. APPROACHES TO THE DELIVERY OF PSYCHOSOCIAL HEALTH SERVICES As of 2005, an estimated 12,000 oncologists practiced in the United States in a variety of practice settings and arrangements, including teaching hospitals (33 percent), group practices (46 percent), solo practices (9 per- cent), and other arrangements. The majority of oncologists (56 percent) worked with nurse practitioners and physician assistants who provided patient education and counseling, pain and symptom management, follow- up care for patients in remission, and other activities as part of patient care (AAMC Center for Workforce Studies, 2007). Oncology practices can take two general approaches to the delivery of psychosocial health services in accordance with the model and standard for care set forth in Chapter 4: (1) providing the needed services and interven- tions directly themselves by offering collocated, integrated psychosocial and biomedical health care, or (2) establishing effective linkages and coor- dination of care with other providers.2 This chapter describes and provides real-life examples of both approaches. Also described is a third approach, a potential variation on the second that involves the use of remote providers of psychosocial health services and can be employed in communities that lack substantial psychosocial health care resources. Many organizations blend these approaches, collocating some psy- chosocial health services on site while coordinating and supplementing 1 The committee located no data describing how cancer care differs across these different settings of care. 2 The committee recognizes that there are cases in which another party (e.g., another health care provider treating a serious comorbid condition or a designated intermediary, such as a disease management entity) also has responsibility for securing appropriate psychosocial health services. However, the committee does not distinguish this as a separate approach to imple- menting the model because coordination of care requires effective linkages among all parties involved, and because at present and for the foreseeable future, the committee believes that the dangers of too little attention to psychosocial problems outweigh the dangers of duplicative attention to those problems. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 221 TABLE 5-1 Distribution of Adult Ambulatory Cancer Care Visits by Site of Visit, Physician Specialty, and Clinic Type, United States, 2001–2002a Visit Characteristic Number/Percentage Annual number of visits (in 1,000s) 20,574 Site of visit (%) Physician’s office 89 Hospital outpatient department 11 Physician office visitsb (%) Oncology 18 Primary care 32 General surgery 10 Specialty surgery 3 Dermatology 7 Urology 14 Other medical specialty 15 Hospital outpatient departmentc (%) General medicine 78 Surgery 14 Other 8 aAdults were categorized as being aged 25 and older. Visits for non-melanoma skin cancer were excluded. bRadiologists were excluded from the sample of office-based physicians. cClinics providing chemotherapy, radiotherapy, physical medicine, and rehabilitation were excluded from the sample of hospital outpatient departments. SOURCE: Analyses of the 2001 and 2002 National Ambulatory Medical Care Survey and the National Hospital Ambulatory Medical Care Survey, as presented in IOM and NRC, 2006. their services with the delivery of other services from off-site providers. As discussed in Chapter 4, there is some evidence that collocated, integrated services are more effective than arrangements with off-site providers in ensuring that patients receive necessary care (Friedmann et al., 2000). In- tegrating psychosocial health care into medical care settings also facilitates patient follow-through on referrals, and allows for better communication between individuals caring for patients and easy exchange of expertise (Pincus, 2003). Studies of care collaboration also have shown that physi- cal proximity facilitates collaboration among health care providers (IOM, 2004). However, when physical collocation of services is not possible, other strategies for linking patients with needed services are required. Approach 1: Collocated, Integrated Psychosocial and Biomedical Health Care In this approach, all components of the model described in Chapter 4 (identification of individuals with psychosocial health needs, care planning, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 222 CANCER CARE FOR THE WHOLE PATIENT linking of patients to providers of the needed services, support for patients in illness self-management, coordination of psychosocial with biomedical health care, and follow-up) take place at the same site where biomedical health care is provided, as well as some psychosocial health services. The physical plant and personnel requirements for implementing this approach are substantial. Examples are found in clinics attached to academic medical centers, but also in some leading community-based oncology practices. Examples The Rebecca and John Moores Cancer Center, University of California, San Diego The Moores Cancer Center’s Science of Caring Program pro- vides comprehensive psychosocial health care integrated with biomedical treatment for all patients with cancer seen in its outpatient clinic. At each outpatient’s initial visit, patient and family meet with a social worker who provides printed information about the psychosocial health services offered on site and an orientation to these services. At this first visit (and at regular intervals thereafter), every patient also uses a laptop computer to complete a simple touch-screen questionnaire—“How Can We Help You and Your Family?”—developed by the center. The questionnaire consists of a list of problems faced by patients with cancer. Patients are asked to identify the extent to which each problem affects them and whether they would like any help in dealing with it. Patients’ responses (encrypted for privacy) are quickly disseminated by e-mail to their health care team of physicians, nurses, psychologists, and social workers. The data are also transmitted automatically to a software program that allows for their analysis. Patients are linked to needed psychosocial health services in multiple ways. First, the computer-based screening program provides an automatic link. For some problems, such as those involving transportation, the pro- gram generates a printout of resources that is presented to patients by administrative staff3 at the end of their appointment. For problems requir- ing a more complex intervention, the automated screening tool generates an e-mail to the team member with the expertise to address the problem. Full-time, on-site social workers also provide case management and refer patients to a wide variety of psychosocial health services available on site (e.g., support groups, educational seminars, psychotherapy, stress manage- ment) and from providers in the community. Psychosocial care is coordinated with medical care by several means. The collocation of psychosocial and biomedical services facilitates timely 3 Administrative staff also receive training and monthly updates on the value of the screen- ing process. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 22� and direct face-to-face communication among providers. Additional com- munication takes place during weekly team meetings and monthly meet- ings with community partners. A designated community health program manager creates linkages between the cancer center and community groups. The center has integrated, on-site relationships with The Wellness Commu- nity, the American Cancer Society (ACS), San Diego Hospice, and ACS’s Cancer Navigator Program, among others. Patients and families receive help in illness self-management through an individualized orientation pro- gram designed to empower, inform, and guide them through treatment. A centrally located Patient and Family Education Center staffed by trained volunteers (most of whom are cancer survivors) offers computers with guided navigation to sources of information and services; information in print and video form; and donated items such as blankets, pillows, hats, and wigs. A Patient Advisory Council chaired by a family caregiver also meets monthly and makes specific recommendations to center leadership. For example, the council reviewed the center’s physical plant before the center opened, and reviews all marketing materials, website designs, and patient education materials. Follow-up on the receipt of needed services, their effectiveness, and the need for any changes occurs in multiple ways. Rescreening of each patient takes place whenever there is a change in treatment (unless the person was screened within the past 30 days) or every 2 months, whichever comes first. Program evaluation also takes place on a quarterly basis when a random chart audit is performed. The program staff includes eight social workers, one psychologist, one psychology fellow, a part-time psychiatrist, one community outreach man- ager, and many students. Social workers are funded with “hard money” as part of the center’s ongoing personnel budget. Although the psychologist bills for services provided, complete reimbursement often does not occur because of low payment rates and failure to receive any reimbursement when the provider is outside the network of some third-party insurers (see Chapter 6 for a discussion of this issue). Funding for the psychosocial pro- gram comes from philanthropy, the cancer center itself, clinical fees, shared programs with community groups, and grants. The director of the program spends substantial time fundraising for an endowed foundation to cover the costs of nonreimbursed services. As a result of this year-and-a-half-old program, the center’s scores on its annual Press-Ganey Oncology Outpatient patient satisfaction survey have tripled. The director identifies two characteristics of the program as key to its success: (1) the collocation and integration of its services with biomedi- cal cancer care; and (2) its active alliances with community organizations (e.g., the center implements programs for The Wellness Community at the Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 22� CANCER CARE FOR THE WHOLE PATIENT center and in the community, and The Wellness Community in turn pays in part for the services of a psychologist).4 The West Clinic, Memphis, Tennessee� The West Clinic consists of three free-standing ambulatory oncology practices in metropolitan Memphis plus three satellite offices 60–90 minutes away from the main offices. Screening of patients for psychosocial health problems and quality-of-life assessment take place at every visit by means of the computer-based Patient Care Moni- tor (PCM) screening instrument (described in Chapter 4), which quickly collects information from individuals about their cancer-related symptoms while they are in the waiting room before meeting with the clinician. Validated instruments gauge pain levels, fatigue, and mental health status. Results are scored and attached to the patient’s chart. More in-depth as- sessment of individuals experiencing significant distress is provided by psychologists located at the largest site (but able to travel to other sites as needed). For some psychosocial health problems, patients receive the needed services directly on site; for others, they are referred to resources in the community by clinic nurses and social workers on an ad hoc basis. Some psychosocial services are offered at the three main ambulatory oncology clinics through on-site psychologists, social workers, nurses, palliative care specialists, other professional psychosocial staff, and volunteers, with dedi- cated space provided for nonclinical activities. A quality-of-life interview and information session with a psychologist are offered to every patient and family prior to the start of treatment. Many psychosocial services are also provided by West Clinic’s approximately 200 trained6 volunteers through a practice-based 501c3 foundation created by the clinic (Wings Cancer Foun- dation). Coordination of psychosocial and biomedical care is accomplished through collocated psychosocial and medical personnel. The Wings Cancer Foundation offers support to patients and families in illness self-management through support groups, a lending library, nu- tritional counseling, exercise and strength building, yoga and relaxation classes, and crisis intervention. In addition, a separate patient education system provides wireless, notebook-sized computers (e-tablets) that pa- tients use while waiting for their appointments or receiving treatment. The e-tablets deploy a proprietary intranet or Internet-based system called the Cancer Support Network, which provides patients with targeted educational 4 Personal communication, Matthew J. Loscalzo, MSW, Director of Patient and Family Sup- port Program, Rebecca and John Moores UCSD Cancer Center, March 12, 2007. 5 Personal communication, Lee Schwartzberg, MD, Medical Director, April 13, 2007. 6 Volunteers undergo formal training on such issues as patient safety, communication, and the Health Insurance Portability and Accountability Act. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 22� information in text, graphic, video, and audio formats on a wide range of topics such as pain management, symptoms and treatment of psychological distress, and other matters relevant to cancer care. The West Clinic credits the commitment of its leadership for its success in building the infrastructure and resources needed to deliver integrated psychosocial and biomedical health services in the context of a community- based practice. Discussion As discussed in Chapter 4, the benefits of collocated, integrated psycho- social and biomedical health care services include better access to needed services for patients and greater ease of communication and coordination between collocated providers. Moreover, some comprehensive programs, such as that of the Moore Center, offer their services to the community at large. The difficulties of this approach are that it requires a physical plant large enough to accommodate diverse personnel and a sufficiently large and varied labor pool in the community to staff interdisciplinary teams. Moreover, some experts in pediatric cancer care report that some cancer survivors do not want to receive services from the center in which they re- ceived their cancer care when it is no longer necessary because of negative emotions associated with the facility, a desire to “get on with their life,” or the geographic inaccessibility of the facility (Friedman et al., 2006). When collocation of services is either infeasible or undesirable, psychoso- cial health services can be obtained through other community providers (Approach 2) or potentially through providers located remotely from the patient using telephone or Internet access (Approach 3). Approach 2: Provision of Psychosocial Health Services Using Local Resources Examples Kansas City Cancer Center7 (KCCC) is a full-service medical and radiation oncology practice that includes 29 medical oncologists, 8 radiation on- cologists, and 11 oncology nurse practitioners (NPs) and oncology certified nurses. The center addresses patients’ psychosocial health problems not by providing the needed services on site to the approximately 200–300 patients seen each day at its 11 urban/suburban locations, but by linking patients with community providers. 7 Personal communication, John E. Hennessy, Nancy J. Washburn, and Barbara W. Adkins, Kansas City Cancer Center, March 13, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 22� CANCER CARE FOR THE WHOLE PATIENT KCCC NPs screen patients at their initial and subsequent visits using a one-page screening tool to detect depression, pain, fatigue, and other prob- lems. If the patient answers yes to either of the first two questions (a two- question depression screening tool), the Patient Health Questionnaire-9 (PHQ-9) screening tool for depression is administered to help determine whether the patient is in fact experiencing depression. Positive findings are addressed using a treatment algorithm standardized across clinical sites (Adkins et al., 2005).8 If an intervention is established, the NP documents it in a note that the physician reviews so as to be able to follow up on the symptoms. The patient may also have a follow-up visit with the NP. NPs and physicians often alternate seeing patients in order to assess the physical, psychosocial, and spiritual needs of patients. Based on the results of the screen and periodic psychosocial assessments, KCCC nurses link patients with multiple psychosocial services available in the Kansas City area. Cancer Action, for example, is a community-based nonprofit agency in Kansas City offering an array of programs and services that address the physical, social, emotional, financial, and spiritual needs of people with cancer and their families and friends. All Cancer Action pro- grams and services are free of charge (see http://www.canceractionkc.org). For patients who are uninsured or underinsured, Swope Parkway Health Center, Catholic Charities, the Alliance for the Mentally Ill of Greater Kan- sas City, Samuel Rodgers Health Center, and Kansas City Free Health Clinic offer mental health counseling either free of charge or on a sliding scale. KCCC also has partnered with Metro CARE, WyJoCARE, and Northland CARE, organizations of specialists that have agreed to take a limited num- ber of uninsured patients. For patients who are working, many employers have employee assistance programs that offer counseling free of charge. If the employees need further counseling, KCCC refers them to a counselor for continuation of care. If there is no employee assistance program where patients work, they are referred based on their insurance. KCCC also partners with Turning Point: The Center for Hope and Healing, a 5-year-old 501c3 organization whose mission is to strengthen resilience in individuals living with cancer or other serious or chronic ill- nesses by providing education and other tools to help them manage their illness and live life to its fullest. Turning Point served approximately 3,400 people in the Kansas City area in 2006; approximately 85 percent of these were cancer patients, 55 percent of whom were referred by KCCC. The more than 50 different education and support programs provided by Turning Point to adults, children, families, and friends include counseling; exercise classes; nutrition classes; and specialized classes such as Surviving 8 KCCC partnered with the Mid America Coalition for Health Care to create the treatment algorithm. The coalition also recommended the use of the PHQ-9 tool. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 22� and Thriving, a comprehensive program for those having completed cancer treatment and having no signs of disease, as well as a program for people being treated for stage 3 or 4 cancer. Group programs are provided free of charge to participants as a result of extensive partnerships with area health care providers, employers, and others whose contributions pay for the services. Although individual counseling generally requires payment of a fee, Kansas City Turning Point provides up to five counseling visits free of charge to KCCC patients or family members if the patient has ad- vanced disease. Turning Point is unique in that its services are not just for individuals dealing with cancer, an approach that may be more feasible in less densely populated areas that may have fewer patients with cancer and fewer community organizations dedicated to cancer care. The number of individuals being served by Turning Point is growing at an average rate of 64 percent annually.9 KCCC NPs also help patients manage their illness by providing them detailed, one-on-one education on treatment and management of the side effects of chemotherapy. Psychosocial health issues are addressed not only during but also after treatment. KCCC has a survivorship program that provides education about the adjustments required after treatment. Pa- tients are given the Li�eStrong® Survivorship Notebook, which contains information on the emotional effects of cancer. In addition, NPs meet with patients approximately 2 months after completion of treatment to address survivorship issues. Care coordination and follow-up are provided by the NPs, who per- form these activities as part of their regular patient care. KCCC bills and receives reimbursement for NP assessment, linkage, coordination, and fol- low-up activities from both government and nongovernment payors (this reimbursement approach is discussed in Chapter 6). No other foundation or special funding subsidizes these activities. KCCC does have a fund set up with the greater Kansas City Community Foundation, but is restricted from using these funds to subsidize the costs of operations; rather, this money is used to fund communitywide cancer education, awareness, and prevention activities. Another fund, created by one patient’s family, pro- vides oral chemotherapy drugs to patients who cannot afford them; this fund is administered by Cancer Action, which processes applications and determines eligibility. Tahoe Forest Cancer Center (TFCC), located in Truckee, California (in the Lake Tahoe community), is another example of using community resources to deliver psychosocial health services to patients with cancer. In this case, 9 Personal communication, Moira A. Mulhern, PhD, CEO of Turning Point, March 15, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 22� CANCER CARE FOR THE WHOLE PATIENT a major source of resources is the community’s 30-bed hospital, Tahoe Forest Hospital. A relocated oncologist and Tahoe Forest Hospital created a solo physician ambulatory oncology practice that routinely incorporates attention to psychosocial health needs as part of oncology care. The solo oncologist uses hospital personnel to help address psychosocial needs of patients. TFCC’s multidisciplinary staff of oncology nurses, social workers, physical therapists, and others are employees of the hospital (which also owns the free-standing ambulatory oncology office). Through these staff (who also work at the hospital), TFCC offers psychological services; social services; nutritional counseling; rehabilitation therapy; and support group meetings for cancer patients, family, and friends at the hospital’s local Cen- ter for Health and Sports Performance. TFCC also offers the Look Good . . . Feel Better Program® and provides or links to a variety of other pa- tient supports and resources on its website (http://www.tahoecancercenter. com). Patients with psychosocial needs are identified during office visits or weekly meetings of the entire team. (The center does not yet use a standard screening tool.) Physicians link patients to psychosocial services by checking off “psychosocial evaluation” on a disposition sheet after patient visits. The staff schedules an appointment with the social worker, who then provides the necessary linkages to the psychosocial team. Coordination of biomedi- cal and psychosocial care takes place at weekly team meetings. Follow-up is performed at these meetings and in the interim by TFCC nurses. Patients are supported in managing their cancer and its treatment in several ways. Each patient receiving chemotherapy spends 1 hour with a TFCC nurse for education about chemotherapy. In addition, patients receive custom- ized printouts from the American Society of Clinical Oncology’s (ASCO’s) People Living with Cancer that provide specific details regarding their disease and planned treatments. TFCC also solicits volunteers from the community to provide assistance and companionship to patients receiving chemotherapy and help with other patient needs. TFCC’s 250 patients are covered by a variety of insurers, including Medicare (18 percent), commer- cial insurance (61 percent), and Medicaid (19 percent); 2 percent pay out of pocket or are uninsured.10 Discussion This approach is feasible for many oncology providers because of sub- stantial growth in the number of providers of psychosocial health services 10 Personal communication. Laurence J. Heifetz, MD, Medical Director, Tahoe Forest Cancer Center, August 10, 13, and 28, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 22� in many communities. According to the report, From Cancer Patient to Cancer Sur�i�or: Lost in Transition, “There is a wealth of cancer-related community support services available through voluntary organizations, many of them at no cost” (IOM and NRC, 2006:229). These services include, for example, nationwide programs of ACS, The Wellness Com- munity, Gilda’s Clubs, and other organizations that offer community-based services at many sites nationwide (some of these are summarized in Ta- bles 3-2 and 3-3 in Chapter 3). These services also include regional, state, and local programs, such as Cancer Action in Kansas City and Sunstone Cancer Support Centers in southern Arizona (see http://www.sunstone healing.org/index.htm). This approach does not require physical space or a large staff. It does, however, require that organizations making referrals to other providers do so effectively, and that the referring organization have strong follow-up procedures in place. Approach 3: Use of Remote Providers of Psychosocial Health Services When a clinical practice has few staff and limited resources and/or is located where there are few or no psychosocial health care resources, such as in rural or remote areas, the only way to provide psychosocial health services on a frequent and timely basis may be to link patients with remote providers through telephone or Internet access. The NCI report Patient Centered Communication in Cancer Care, for example, notes that “telephone help lines can be a useful source of information and emotional support for patients with cancer” (Epstein and Street, 2007:138), and indi- viduals with a recent cancer diagnosis, for example, often use NCI’s Can- cer Information Service to obtain information about cancer treatments in preparation for meeting with their clinician (Epstein and Street, 2007). Even practices that elect to deliver a wide variety of psychosocial health services directly may not by themselves be able to provide all of the services needed by every patient, and may still need to provide links to remote services. For example, despite the well-developed nature and breadth of services it provides, Moores Cancer Center refers many of its patients to CancerCare each month for educational programs and financial assistance. This alternative may also be preferred by some individuals, even when psychosocial health services are available in their communities. Those with rare cancers may wish to connect with others who have their type of cancer, but find that the rarity of their condition means that this is impossible within their community. Others may simply desire the convenience or anonymity of receiving psychosocial services via the telephone or the Internet in their own homes. Adolescents and young adults who use the Internet routinely for multiple purposes also may prefer this mode of communicating. Using remote resources to provide psychosocial health services to Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT patients requires only that oncology providers have a mechanism for iden- tifying patients with psychosocial needs; knowledge of a few key organiza- tions providing a wide array of psychosocial health services to individuals with many different types of cancer (e.g., NCI’s Cancer Information Service, ACS, CancerCare, the Lance Armstrong Foundation, and The Wellness Community); a way to support patients in accessing these resources by telephone or Internet; and a process for follow-up to ensure that patients accessed the services and that the services met their psychosocial health needs. Following is a discussion of how an organization with limited in- ternal and local resources could address psychosocial needs following the model put forth in Chapter 4. This approach may not always be able to meet all psychosocial health needs; for example, some of the needed ser- vices, such as assistance with activities of daily living and chores, may not be available remotely. Nonetheless, this should not prevent providers from directing patients to remote resources that can meet as many of their needs as possible. Implementation of the Use of Remote Resources Clinical practices with limited resources can set the stage for effective patient–provider communication and delivery of psychosocial health ser- vices by communicating with patients about psychosocial health services at the outset of care. This could be accomplished, for example, through a short “Letter to My Patients” given to all patients at their first visit.11 This letter could inform patients about the importance of communicating ef- fectively and the relevance of psychological and social issues to their health and health care. Box 5-1 contains a sample letter that oncology practices could adapt to their own characteristics—for example, the extent to which a practice uses a team approach to care. Practices could then use one of the low-tech approaches discussed in Chapter 4 that require few personnel and other resources to help identify patients with psychosocial health needs. The National Comprehensive Can- cer Network’s (NCCN’s) Distress Thermometer, for example is a one-page screening tool, publicly available at no cost, that can be self-administered in less than a minute. This tool could be duplicated using an office copy machine and presented by clinical or administrative staff to all patients each time they come in for a visit along with other routine paperwork, such as insurance forms. When completed, the screening tool could be attached to the patient’s chart and reviewed by the clinician together with the patient during the visit. To the extent that a clinician’s evaluation of psychological 11 This letter could also be used by clinical practices with greater internal and community resources. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 2�1 BOX 5-1 A Letter to My Patients Dear Partner in Care, As we work together to treat your cancer, I will work very hard to give you the best health care for your cancer. As I do this, I will need your help in two impor- tant ways. First, you and I will need to talk with each other as clearly as we can. Medical words can be hard to understand, and this office can be very busy, but you and the people important to you need to understand your illness, its treatment, and all their effects. If I or my staff don’t explain things well enough or listen well enough, please tell us. We also need you to tell us what is on your mind. For example, what questions do you have? How much information do you want to know? What is important to you as you decide about different treatments for your cancer? COMMUNICATING WELL IS IMPORTANT TO YOUR CARE! Second, emotional worries and problems that might not seem related to your health care actually are. Having worries, fears, or other emotional problems can make you feel more tired, have more pain, sleep more poorly, and get in the way of good health care—all of which affect your heath. Your health is also affected by problems such as not being able to pay for medications; not having a phone, transportation, or health insurance; or not being able to work. At every visit, we will ask you to check off a list of any emotional or other problems you may be having. Although we may not be able to solve all of these problems ourselves, we know organizations that can help with many of them—and these are often just a toll-free phone call away. PAYING ATTENTION TO YOUR EMOTIONAL AND SOCIAL NEEDS IS PART OF HEALTH CARE TOO! Please let me or other members of our health care team know if you have any questions. We want to give you the best health care possible! and social problems added substantial time to the visit, the clinician could bill at a higher rate if reimbursed on a fee-for-service basis (see Chapter 6), although there is some evidence that use of a screening tool could reduce visit length (Pruyn et al., 2004). All practices should be able to provide at least some of the psychosocial health services needed by patients—for example, information about the patient’s diagnosis and treatment options, emotional support, and help in managing some of the symptoms of the illness and side effects of treatment. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT For those psychosocial health service needs that exceed the practice’s capa- bilities (e.g., material or logistical resources or peer support), the practice could have available a one-page handout listing organizations that can provide key psychosocial health services and can be accessed using a toll- free phone number. An example of such a patient handout is provided in Box 5-2. This handout could be adapted to include other resources, espe- cially those locally available. The reverse side could include a broader list of resources for those who are comfortable with and have easy access to the Internet. Follow-up with patients to check on their receipt of psychosocial health services and the effectiveness of the services could be accomplished either by checking with the patient at the next visit through the repeated use of the original screening tool, by monitoring between visits through telephone calls by office staff, or by asking patients or their caregivers to inform the practice if their psychosocial health care needs are not being met. Remote Resources As shown in Tables 3-2 and 3-3 in Chapter 3, a substantial number of nonprofit organizations provide psychosocial health services at no cost to patients via toll free phone lines, interactive Internet sites, or e-mail inquiry and response services. Virtual communities providing emotional support, information, and sometimes other psychosocial health services also are now commonplace. Their services are available to many cancer patients as a result of such Internet-based initiatives as those of PlanetCancer (http:// www.planetcancer.org/html/index.php), which serves young adults, and The Wellness Community (http://www.thewellnesscommunity.org), which offers professionally led Internet support groups and educational programs to adults with all types of cancers via the Internet, in addition to its 21 Wellness Communities and 28 satellite centers at physical locations across the United States. As of June 30, 2006, 1,103 people were participating in the Wellness Community’s 11 online support groups, 7 tumor-specific and mixed-diagnosis groups, 3 caregiver groups, 1 bereavement group, 1 teen group, and 1 Spanish-language group. Another remote resource is the telephone education workshops pro- vided by CancerCare for cancer patients, caregivers, and other interested persons. Approximately 2,000 people from the United States and countries such as Australia, Canada, China, Spain, and the United Kingdom attended each of three such workshops held in the first half of 2007. The utility of the workshops is indicated by the comments of those in attendance (see Box 5-3). CHESS (Comprehensive Health Enhancement Support System) is another Internet-based resource that can provide remote information, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 2�� BOX 5-2 Example of Patient Handout on Sources of Help in Managing Cancer and Its Treatment If you need more information about your cancer and its treatment, you can call: The National Cancer Institute. Information specialists can answer many questions about cancer, including most recent treatment advances. By telephone Monday through Friday, 9:00 AM to 4:30 PM within all time zones across the United States: 1-800-4-CANCER (1-800-422-6237) and 1-800-332- 8615 (TTY for the hearing impaired) (both toll free) Service in English and Spanish Questions can also be sent via e-mail to: cancergovstaff@mail.nih.gov A “live” help service is available to answer general questions about cancer and provide help in navigating the NCI website at https://cissecure@nci.nih. gov/livehelp/welcome.asp# The American Cancer Society By telephone 24 hours a day, every day: 1-800-ACS-2345 and 1-866-228- 4327 (TTY for the hearing impaired) (both toll free) By the Internet at: http://www.cancer.org/asp/contactUs/cus_global.asp If you need practical help, such as finding wigs or transportation or assis- tance with financial problems, you can call: The American Cancer Society (same as above) CancerCare By telephone Monday through Thursday, 9:00 AM to 7:00 PM Eastern Stan- dard Time, and Friday, 9:00 AM to 5:00 PM Eastern Standard Time (no week- end phone service): 1-800-813-HOPE (1-800-813-4673) (toll free) By the Internet at: http://www.cancercare.org If you would like to talk to someone about your concerns about having cancer or other concerns or talk with others who are living with cancer, you can call: The American Cancer Society (same as above) CancerCare (same as above) emotional support, and decision-making and problem-solving assistance to people with cancer and other chronic illnesses (e.g., asthma, HIV, heart dis- ease) and caregivers of persons with memory disorders and dementia. The design of the program is based on the results of literature reviews, needs as- sessment surveys typically involving several hundred patients and families, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT BOX 5-3 Patient Comments on the Usefulness of CancerCare’s Telephone Education Workshops My husband and I got a lot of good information from this workshop—very good advice at a difficult time for us. These programs are so helpful. Living in a rural area we don’t always have the resources nearby. Thank you for helping me to understand the aftermath of my treatment, what to look forward to and how to manage it. What a fabulous way to reach people who, like me, are in remote areas and have limited access to support. This forum provides a much-needed service. Thank you for your teleconferences. It keeps us in rural areas up on the latest. I can’t thank you enough for making these available via telephone for those of us in treatment or unable to travel. Of course my own oncologist can’t spend an hour talking with me. I feel so blessed that [these calls] provide me with top experts and up-to-the-minute information. The topic was one I haven’t seen presented anywhere else. It was very easy to call in and take part in the conference. I’m glad I did and I’m looking forward to the next one. Thank you!!! When my aunt suffered breast cancer 20 years ago, she had to go it alone because she was too sick to get to support groups. I not only have email, but your teleconferences and the ability to refer to the podcast again to review points I may have missed. Thank you for taking advantage of technology for my benefit. I actually listened via cell phone, while on vacation, sitting on the veranda of a grand old lodge, on one of Georgia’s beautiful barrier islands, overlooking a won- derful marshy waterway that leads to the Atlantic. It was the best way I’ve ever found to deal with cancer issues! The call-in portion was also very instructive given the fact that my wife and I have many of the same questions. After the discussion on “rocker” sole shoes, we found a location last Saturday and purchased a pair that is already giving me some needed comfort. I can even participate in a conference during lunch or when I’m traveling. It’s in- credibly versatile and educational, useful and extremely helpful. Keep these workshops coming. The more we know, the more able we are to judge if we are getting good and up-to-date care out here in rural areas. I love these programs. They keep me up-to-date and I can go back to my doctor and we talk about all I have learned and I feel very in the know. Thank you for offering these sessions and for offering them free of charge. They really do help survivors and offer a huge community service. Thank you for also offering the listening session after the workshop so those that miss the session can still hear the information. SOURCE: CancerCare, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 2�� focus groups and interviews, and an ongoing demonstration. Because it ad- dresses multiple conditions, the program can serve as a “one stop” resource for individuals who have other illnesses in addition to cancer. CHESS services are accessed through home-based computers (organiza- tions using the program often lend computers to patients who do not have them). As an example, information services for prostate cancer include brief answers to 400 frequently asked questions, links to more than 200 articles from the scientific and popular press, and WebLinks to connect users to other high-quality websites specific to the illness. A resource di- rector also identifies local and national services and ways to connect with them. For emotional support, CHESS offers patients and families bulletin board–style discussion groups, each of which is limited to 50 participants and is professionally facilitated. Ask an Expert provides confidential re- sponses to questions via NCI’s cancer information service. Personal stories written by professional writers who interview people with cancer, as well as videos, show how individuals have managed problems frequently identi- fied through needs assessments. Analysis, assessment, and decision-support services help patients think through issues important to them and make be- havior changes. A health-tracking program collects data on an individual’s health status every 2 weeks and charts change over time. The design of CHESS accommodates various coping and information-seeking styles by tailoring information and support to users’ interests. A team of decision, medical, information, and communication experts designs the decision-making and health-tracking tools. All CHESS modules are pilot-tested, then further refined on the basis of patient and clinician feedback before being released for dissemination. Modules are updated regularly to ensure that their content is accurate, relevant, and current and to improve their ease of use. All information is reviewed and updated (if needed) annually by advisory panels that include a range of professionals and patients. Intra-CHESS links and links to external websites also are checked biweekly. Patient feedback is actively solicited to identify voids in information and guide the development of system enhancements. Clinicians at participating research sites are encouraged to provide ideas for how CHESS can be adapted to better meet their needs. In addition, health care organizations are urged to review the content of modules before using them with their patients. Suggestions, questions, or feedback on the program content can be e-mailed to CHESS. CHESS has been studied extensively across multiple illnesses, including cancer, and in a number of different ways, ranging from randomized trials and field tests designed to assess its impact on quality of life (Pingree et al., 1996; Gustafson et al., 1999; Shaw et al., 2006) to evaluation of the cost and effectiveness of different methods for disseminating the CHESS systems (Gustafson et al., 2005a,b). Results of these studies show positive effects on Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT multiple dimensions, including emotional well-being, functional well-being, competence in dealing with health information, participation in health care, and quality of life. Other important findings are that underserved popula- tions used CHESS more than socially advantaged populations and that they used it for different purposes. The former used the program more often to locate and analyze information and the latter more to participate in discus- sion groups (Gustafson et al., 2001, 2002). Formerly a demonstration program, CHESS is now an ongoing program with continued operation and updating provided by the University of Wis- consin Comprehensive Cancer Center. Oncology practices and individual patients desiring to use it can do so.12 The CHESS breast cancer program is available on the web in English and Spanish versions. The English ver- sion (Living with Breast Cancer) can be accessed at http://www.uwchessbc. org. The Spanish-language site, “Conviviendo con el Cancer de Seno,” is a cultural and linguistic translation of the existing online Living with Breast Cancer program. The translation was performed by a multinational team from Mexico, Argentina, and Venezuela with guidance from the Dane County Latino Health Council. Partners, including the National Latino Cancer Research Network and the Center for Patient Partnerships, provided additional Latina-specific content. Conviviendo con el Cancer de Seno can be accessed at http://www.chess.wisc.edu/espanol/.13 Discussion As useful as approaches such as The Wellness Community, CHESS, and other online and telephone services may be, there are some obstacles to their use. First, not all consumers may have access to the technology or the ability to use it in their homes, even if it is provided to them. Patients using entry-level computers with slow modems can be “timed out” by their Internet provider during a support session, causing an interruption in their participation. Second, it may not be possible to deliver all needed psycho- social health services on line. Delivery of mental health services over the Internet is still an evolving technology, and other services, such as cognitive testing, educational support, and support in performing activities of daily living, must still be provided directly. Nevertheless, telephone and Internet support can be used to provide some psychosocial health services, and clini- cians should not let an inability to ensure the provision of all such services prevent their taking action to ensure the provision of as many as possible. 12 By contacting 1-800-361-5481. 13 Personal communication, David Gustafson, University of Wisconsin-Madison, July 10, 2007, and Fiona McTavish, Deputy Director of CHESS, July 16, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 2�� RECOMMENDATIONS Based on the evidence presented in Chapters 3 and 4 and the additional evidence presented in this chapter on the feasibility of providing psycho- social health services in accordance with the standard recommended in Chapter 4, the committee makes the following recommendations. Recommendation: Health care providers. All cancer care providers should ensure that every cancer patient within their practice receives care that meets the standard for psychosocial health care. The National Cancer Institute should help cancer care providers implement the stan- dard of care by maintaining an up-to-date directory of psychosocial services available at no cost to individuals/families with cancer. In making this recommendation, the committee appreciates that patients diagnosed with cancer are treated for their illness by many different types of providers—some specializing in oncology and others, such as primary care physicians and general surgeons, who have a patient population that is more heterogeneous with respect to diagnosis. Patients with cancer may make up a minority of patients seen by the latter clinicians. The committee believes that all providers should implement the above recommendation, but appreciates that those whose practices are not devoted to oncology may have other strategies, standards, and expectations placed on them by experts in the care of patients with other diseases. While the committee believes that the standard of psychosocial health care has applicability to all chronic diseases (as illustrated by the breadth of clinical conditions ad- dressed by the models of care reviewed in Table 4-1 in Chapter 4), it calls upon oncology practices to lead the way in implementing this standard of care and providing cancer care “for the whole patient.” In making this recommendation, the committee also appreciates that there is not currently as ample a supply of psychosocial services as is nec- essary to meet all the needs of all patients, and some problems (such as a lack of health insurance and poverty) can be addressed only in a small way. Nevertheless, the committee urges all involved in the delivery of cancer care not to allow the perfect to be the enemy of the good. The inability to solve all psychosocial problems permanently should not preclude attempts to remedy as many as possible—a stance akin to treating cancer even when a successful outcome is not assured. Patient education and advocacy organi- zations can play a key role in bringing this about. Recommendation: Patient and family education. Patient education and advocacy organizations should educate patients with cancer and their family caregivers to expect, and request when necessary, cancer Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT care that meets the standard for psychosocial care. These organizations should also continue their work on strengthening the patient side of the patient–provider partnership. The goals should be to enable patients to participate actively in their care by providing tools and training in how to obtain information, make decisions, solve problems, and com- municate more effectively with their health care providers. Finally, the organizational, financial, and size differences among cancer care practices may influence the strategies providers use to implement the standard of care. For example, the economics of collocation and care coor- dination is affected by the volume of cases. Local resources also influence the way in which care is organized. The committee concluded that evidence is sufficient to establish a stan- dard for the delivery of psychosocial health care to patients with cancer. At the same time, as discussed in Chapter 4, much of the research under- pinning this recommendation comes from populations with diseases other than cancer, and evidence in support of the individual components of the model is of variable strength. Thus a large-scale, systematic program dem- onstrating and evaluating the effects of the implementation of the standard of psychosocial health care at various oncology sites (e.g., comprehensive cancer centers attached to medical centers, freestanding oncology practices, and smaller oncology practices located outside of urban areas) would pro- vide useful information about different ways to implement the standard as a whole and its individual components more efficiently in oncology practices and the impact of doing so. Demonstrating the model of care in general medical practices would provide additional valuable information. Patients with cancer may not constitute the majority of the patients of such practices, and a demonstration could address how these practices could implement the standard of psychosocial care. For example, would such a practice adopt the standard only for patients with cancer, for patients with other complex conditions as well, or for all patients? Such a demonstration program would allow the model to be honed over time and generate ad- ditional examples of how it can be implemented efficiently and effectively. Moreover, measuring such outcomes as reductions in unmet needs and levels of distress, adherence to treatments, and cost-effectiveness would make it possible to compare different approaches to implementing the standard. A demonstration also could document effects of and approaches for successful implementation of the standard among vulnerable groups, such as those with low socioeconomic status, ethnic minorities, those with low health literacy, older adults, and the socially isolated. In addition, such a demonstration could examine different models of reimbursement, reveal additional ways of implementing the standard in resource-rich and non- resource-rich environments, and test the feasibility and soundness of perfor- Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html IMPLEMENTING THE STANDARD OF CARE 2�� mance measures for psychosocial health care. The demonstration could also examine how various types of personnel can be used to perform specific types of interventions and how those personnel can best be trained. Recommendation: Support for dissemination and uptake. The Na- tional Cancer Institute, the Centers for Medicare & Medicaid Services (CMS), and the Agency for Healthcare Research and Quality (AHRQ) should, individually or collectively, conduct a large-scale demonstra- tion and evaluation of various approaches to the efficient provision of psychosocial health care in accordance with the standard of care. This program should demonstrate how the standard can be implemented in different settings, with different populations, and with varying person- nel and organizational arrangements. REFERENCES AAMC Center for Workforce Studies. 2007. 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International Journal of Medical Informatics 65(3):169–177. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT Gustafson, D. H., F. McTavish, W. Stengle, D. Ballard, E. Jones, K. Julèsberg, H. McDowell, W. C. Chen, K. Volrathongchai, and G. Landucci. 2005a. Use and impact of ehealth system by low-income women with breast cancer. Journal of Health Communication 10(Supplement 1):157–172. Gustafson, D. H., F. M. McTavish, W. Stengle, D. Ballard, E. Jones, K. Julèsberg, H. McDowell, G. Landucci, and R. Hawkins. 2005b. Reducing the digital divide for low-income women with breast cancer: A feasibility study of a population based intervention. Journal of Health Communication 10(Supplement 1):173–193. IOM (Institute of Medicine). 2004. Keeping patients safe: Transforming the work en�ironment of nurses. A. E. K. Page, ed. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2006. From cancer patient to cancer sur�i�or: Lost in transition. M. Hewitt, S. Greenfield, and E. Stovall, eds. Washington, DC: The National Academies Press. Pincus, H. A. 2003. The future of behavioral health and primary care: Drowning in the main- stream or left on the bank? Psychosomatics 44(1):1–11. Pingree, S., R. Hawkins, D. Gustafson, E. Boberg, and E. Bricker. 1996. Can the disadvantaged ride the information highway? Hopeful lessons from a computer assisted crisis support system. Journal of Broadcasting and Electronic Media 40:331–353. Pruyn, J. F. A., H. A. G. Heule-Dieleman, P. P. Knegt, F. R. Mosterd, M. A. G. van Hest, H. A. M. Sinnige, A. T. H. Pruyn, and M. F. de Boer. 2004. On the enhancement of efficiency in care for cancer patients in outpatient clinics: An instrument to accelerate psychosocial screening and referral. Patient Education and Counseling 53(2):135–140. Shaw, B., D. Gustafson, R. Hawkins, F. McTavish, H. McDowell, S. Pingree, and D. Ballard. 2006. How underserved breast cancer patients use and benefit from ehealth pro- grams: Implications for closing the digital divide. American Beha�ioral Scientist 49(6): 823–834. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�1 6 Public- and Private-Sector Policy Support CHAPTER SUMMARY Policies set by public and pri�ate purchasers, o�ersight bodies, and other health care leaders shape how health care is accessed, what ser�ices are deli�ered, and the manner in which they are deli�ered. Many of these policies already support the pro�ision of some psychosocial health care. The decision by Medicare and leading purchasers in the pri�ate sector to pay for beha�ioral health assessments and inter�entions is a strong example of these policies, as is Medicare’s recent decision to increase pay- ment le�els for patient e�aluation and management ser�ices. Howe�er, other reimbursement policies ha�e not kept pace with the e�idence for the strong influence of psychological and social problems on health care and outcomes set forth in Chapter 2. Reimbursement approaches for care coordination for indi�iduals with complex needs are not well articulated. Restrictions on which clinicians can be paid can make it difficult to access those with special expertise and present a barrier to the collocation of clini- cal oncology and mental health ser�ices—a situation that is problematic since collocation is an effecti�e approach for increasing access to mental health ser�ices and coordination of those ser�ices with biomedical care. Moreo�er, the results of many studies finding that poor-quality health care is widespread show that reimbursement by itself does not ensure the pro�ision of needed health care ser�ices. Reimbursement and other incenti�es need to be aligned with quality measurement and impro�ement acti�ities, which currently are inadequate in addressing psychosocial health ser�ices. To o�ercome these obstacles, the committee recommends that group purchasers of health care co�erage, health plans, and quality o�ersight Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT organizations take a number of actions to fully support the inter�entions necessary to deli�er effecti�e psychosocial health ser�ices. The National Cancer Institute, the Agency for Healthcare Research and Quality, and the Centers for Medicare & Medicaid Ser�ices also should spearhead the de�elopment and use of performance measures to impro�e the deli�ery of these ser�ices. SUPPORTS FOR AND CONSTRAINTS ON INTERVENTIONS TO DELIVER PSYCHOSOCIAL SERVICES Chapter 4 delineates the processes that all oncology providers need to have in place to ensure that the psychosocial problems affecting their patients’ health care and outcomes are effectively addressed. These in- clude processes that (1) support effective patient–provider communication; (2) identify individuals with psychosocial health needs; (3) link patients with service providers; (4) coordinate psychosocial and biomedical care; (5) help patients manage their illness; and (6) follow up to ensure the ef- fectiveness of services. The need for these processes is already recognized by many group purchasers, insurers, and other policy makers, as reflected in their policies (see Table 6-1 and the discussion that follows). Other poli- cies, however, do not reflect existing evidence on the need for and methods of delivering psychosocial health care. Medicare policies are of particular interest for several reasons. Because 60 percent of new cancer cases occur among people aged 65 and older, Medicare is the principal payer for cancer care (IOM, 1999). Moreover, Medicare typically pays about 83 percent of what private insurers pay (MEDPAC, 2007); therefore, to the extent that Medicare payment rates allow for reimbursement of practice expenses related to the processes enu- merated above, reimbursement by private payers should do so to a greater extent. Medicare also is a leader in technology assessment and coverage determinations; its decisions are often followed by private-sector insurers. Finally, Medicare’s policies on coverage determination and rate setting are more visible to the public than those of the private sector, enabling their study. This section reviews key Medicare reimbursement policies and their effects on the provision of psychosocial health services to individuals with cancer. The discussion encompasses both “traditional” Medicare payments to physicians—payments made to individual health care clinicians on a fee- for-service (FFS) basis after an individual patient has made an outpatient visit or undergone a procedure—and Medicare’s ad�ance (prospective, capitated) payments to managed care and other health plans for the delivery of an array of inpatient and outpatient services that a Medicare beneficiary may need over a specified period of time (the Medicare Advantage [MA] Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� program).1 Policies of private insurers and of Medicaid, the State Children’s Health Insurance Program (SCHIP), and other government programs also are discussed as data are available. Policies Addressing Effective Patient–Provider Communication As indicated in Table 6-1, a few large-scale policy initiatives are under way to promote more effective patient–provider communication in general.2 The Cancer Survival Toolbox (available free of charge) teaches people living with cancer how to obtain information, make decisions, solve problems, and generally communicate more effectively with health care providers (NCCS, 2007). The Questions Are the Answer Campaign (AHRQ, 2007b) and Ask Me �™ initiative (Partnership for Clear Health Communication, undated) also encourage all patients to ask questions of their providers. Policy support for the provider side of the patient–provider partnership is illustrated by the efforts of the Veterans Health Administration, whose Employee Education System provides mandatory and optional classes on such topics as clinician–patient communication to enhance health outcomes, communication to affect behavior change, and disclosure of unanticipated outcomes and medical errors. Other initiatives to improve patient–provider communication by organizations such as Kaiser Permanente, Geisinger Health System, the American Academy of Orthopedic Surgeons, Affinity Health System, and Washington State University are chronicled by the In- stitute for Healthcare Communication (2005), which has conducted more than 9,000 workshops for more than 120,000 clinicians and health care workers on improving communications between clinician and patient. Fur- ther support is provided by the Agency for Healthcare Research and Qual- ity’s (AHRQ’s) Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey Instruments. This ambulatory care survey tool has separate versions for adult specialty care and adult and child primary care, each containing multiple questions specifically asking patients about how their physician communicated and shared decision mak- ing with them (AHRQ, 2007a). In addition to these instruments’ potential use as performance measures, the American Board of Medical Specialties (ABMS) is pursuing use of the specialty version to help determine physi- cian competency in effective communication as part of its Maintenance 1 MA plans serve approximately 17 percent of Medicare beneficiaries (MEDPAC, 2007). 2 Many more initiatives are in place to improve provider communication with members of cultural and ethnic minorities and other vulnerable populations. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT TABLE 6-1 Examples of Policy Support for Interventions to Deliver Psychosocial Health Care Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Support for Effective Patient–Provider Communication (excluding initiatives providing information on services only and those focused solely on cross-cultural communication) • Some health plans and providers make patient– provider communication a priority throughout their organization. See examples at Institute for Healthcare Communication: http:// www.healthcarecomm. org/index.php Support is provided by: • Agency for Healthcare Research and Quality’s (AHRQ) Questions Are the Answer campaign • AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey questions on effective provider communication and shared decision making • Veterans Health Administration’s mandatory and optional courses on effective communication for all employees and National Symposium on Clinician- Patient Communication • National Cancer Institute’s (NCI): – Research Symposium on Consumer–Provider Communication in 2002 – Synthesis of literature on physicians’ communication behaviors in cancer care and generally – State-of-the-science report Patient-Centered Communication in Cancer Care puts forth a comprehensive research agenda addressing patient-provider communication (Epstein and Street, 2007) Support is provided by: • Accreditation Council for Graduate Medical Education (ACGME) Outcome Project competencies on residents’ interpersonal and communication skills • American Board of Medical Specialties’ Maintenance of Certification initiative • Cancer Survival Toolbox • Joint Commission Speak Up™ initiatives • Partnership for Clear Health Communication’s Ask Me �™ Initiative Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� TABLE 6-1 Examples of Policy Support for Interventions to Deliver Psychosocial Health Care Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Support for Effective Patient–Provider Communication (excluding initiatives providing information on services only and those focused solely on cross-cultural communication) • Some health plans and providers make patient– provider communication a priority throughout their organization. See examples at Institute for Healthcare Communication: http:// www.healthcarecomm. org/index.php Support is provided by: • Agency for Healthcare Research and Quality’s (AHRQ) Questions Are the Answer campaign • AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey questions on effective provider communication and shared decision making • Veterans Health Administration’s mandatory and optional courses on effective communication for all employees and National Symposium on Clinician- Patient Communication • National Cancer Institute’s (NCI): – Research Symposium on Consumer–Provider Communication in 2002 – Synthesis of literature on physicians’ communication behaviors in cancer care and generally – State-of-the-science report Patient-Centered Communication in Cancer Care puts forth a comprehensive research agenda addressing patient-provider communication (Epstein and Street, 2007) Support is provided by: • Accreditation Council for Graduate Medical Education (ACGME) Outcome Project competencies on residents’ interpersonal and communication skills • American Board of Medical Specialties’ Maintenance of Certification initiative • Cancer Survival Toolbox • Joint Commission Speak Up™ initiatives • Partnership for Clear Health Communication’s Ask Me �™ Initiative continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Identification of Psychosocial Needs • Medicare law generally proscribes fee-for-service (FFS) reimbursement for “screening,” but screening still occurs in FFS and Medicare Advantage plans in several ways • Medicare FFS also provides full coverage for health and behavior assessment Coverage and reimbursement vary by state, but generally: • Some screening covered for children under age 21 through the Medicaid Early Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit • Coverage of Health and Behavior Current Procedural Terminology (CPT) codes varies by state • Coverage of mental health screening varies by health plan • Coverage for health and behavior assessment CPT codes is provided by many insurers Other government programs reimburse or provide services to identify psychosocial needs, e.g., • Department of Veterans Affairs Medical Centers annually screen all patients for depression and alcohol misuse prompted by patients’ computerized medical records • Older Americans Act programs also perform needs assessments Voluntary organizations offer mental health screenings Care Planning; Linking of Patients with Psychosocial Services; Coordination of Psychosocial and Biomedical Care; Follow-up • Some reimbursement is provided as part of FFS payments for medical Evaluation and Management (E/M) services, and payments for some E/M services increased in 2007 • Medicare Advantage plans’ more flexible reimbursement also allows for these services • Multiple demonstration projects are ongoing to test models of care coordination • Medicaid payments are generally low, but states’ Primary Care Case Management (PCCM) programs offer some financial support, as do state Medicaid agency contracts with managed care plans; as of 2005, 25 states offered PCCM services with some limits • Most states also offer “targeted case management” to certain beneficiaries to enable access to and coordination of necessary medical, social, and educational care and other service needs (CMS, 2005a) • Some support is provided through nurse support systems for patients established by some private insurers • Some support also provided through the E/M billing codes reimbursed by private insurers • Managed care plans’ more flexible reimbursement also facilitates these services (see, e.g., AHIP, 2007) Support is provided by Maternal and Child Health Programs for Children with Special Health Care Needs Support is provided by American Cancer Society’s Patient Navigator program TABLE 6-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Identification of Psychosocial Needs • Medicare law generally proscribes fee-for-service (FFS) reimbursement for “screening,” but screening still occurs in FFS and Medicare Advantage plans in several ways • Medicare FFS also provides full coverage for health and behavior assessment Coverage and reimbursement vary by state, but generally: • Some screening covered for children under age 21 through the Medicaid Early Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit • Coverage of Health and Behavior Current Procedural Terminology (CPT) codes varies by state • Coverage of mental health screening varies by health plan • Coverage for health and behavior assessment CPT codes is provided by many insurers Other government programs reimburse or provide services to identify psychosocial needs, e.g., • Department of Veterans Affairs Medical Centers annually screen all patients for depression and alcohol misuse prompted by patients’ computerized medical records • Older Americans Act programs also perform needs assessments Voluntary organizations offer mental health screenings Care Planning; Linking of Patients with Psychosocial Services; Coordination of Psychosocial and Biomedical Care; Follow-up • Some reimbursement is provided as part of FFS payments for medical Evaluation and Management (E/M) services, and payments for some E/M services increased in 2007 • Medicare Advantage plans’ more flexible reimbursement also allows for these services • Multiple demonstration projects are ongoing to test models of care coordination • Medicaid payments are generally low, but states’ Primary Care Case Management (PCCM) programs offer some financial support, as do state Medicaid agency contracts with managed care plans; as of 2005, 25 states offered PCCM services with some limits • Most states also offer “targeted case management” to certain beneficiaries to enable access to and coordination of necessary medical, social, and educational care and other service needs (CMS, 2005a) • Some support is provided through nurse support systems for patients established by some private insurers • Some support also provided through the E/M billing codes reimbursed by private insurers • Managed care plans’ more flexible reimbursement also facilitates these services (see, e.g., AHIP, 2007) Support is provided by Maternal and Child Health Programs for Children with Special Health Care Needs Support is provided by American Cancer Society’s Patient Navigator program TABLE 6-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Support for Illness Self-Management • Full coverage is provided for Health and Behavior Intervention CPT codes • Patient and family instruction/education in managing illness is provided for in E/M codes • Multiple care coordination demonstrations are teaching illness management practices • Patient and family instruction/education in managing illness is provided for in E/M codes, but Medicaid payment rates are lower than those of private insurance and Medicare, which may be a disincentive to provide these services • Some coverage is provided for Health and Behavior Intervention CPT codes • Managed care plans’ more flexible reimbursement also facilitates these services (see, e.g., AHIP, 2007) • Patient and family instruction/education in managing illness is provided for in E/M codes • Some telephonic case management or nurse support systems offered by some private insurers offer support • Administration on Aging grant program to states and local communities, Empowering Older People to Take More Control of Their Health through E�idence- Based Pre�ention, requires use of illness self-management • Large number of programs offered in the voluntary sector (see Chapter 3) • Employer programs and policies such as Employee Assistance Programs and leave policies, e.g., availability of extended leave of absence, flex time work hours, and unscheduled leave TABLE 6-1 Continued of Certification initiative.3 A CAHPS specialty version could be used in oncology practices as a way to systematically measure and help improve patient–provider communication. Despite the above initiatives to help patients and providers commu- nicate more effectively, the limited number and scope of such initiatives constrains improvement in this area. The new CAHPS Clinician and Group Survey instruments can provide a vehicle to help educate both patients and providers and facilitate clinicians’ adoption of new communication behaviors, but mechanisms need to be in place to collect the data from patients and relay them back to providers in ways that will improve com- munication. These mechanisms (discussed later in this chapter) are not yet in place. In addition, although ineffective patient–provider communication is not typically identified as resulting from a failure to reimburse for effec- tive communication, financial incentives to see greater numbers of patients (and thereby limit providers’ time with each patient) are sometimes cited as 3 The ABMS Member Boards helped develop the three versions of the survey—one for adult primary care, one for proceduralists/surgeons, and one for pediatricians. The impetus for these efforts was the need for instruments to measure patient care experiences and physician–patient communication as an aspect of physician competence in the ABMS Maintenance of Compe- tence Program. Personal communication, Stephen Miller, MD, President, ABMS, March 23, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� Interventions (from Figure 4-1 in Chapter 4) Medicare Medicaid/SCHIP Private Insurance Other Government Programs Other Private Sector Support for Illness Self-Management • Full coverage is provided for Health and Behavior Intervention CPT codes • Patient and family instruction/education in managing illness is provided for in E/M codes • Multiple care coordination demonstrations are teaching illness management practices • Patient and family instruction/education in managing illness is provided for in E/M codes, but Medicaid payment rates are lower than those of private insurance and Medicare, which may be a disincentive to provide these services • Some coverage is provided for Health and Behavior Intervention CPT codes • Managed care plans’ more flexible reimbursement also facilitates these services (see, e.g., AHIP, 2007) • Patient and family instruction/education in managing illness is provided for in E/M codes • Some telephonic case management or nurse support systems offered by some private insurers offer support • Administration on Aging grant program to states and local communities, Empowering Older People to Take More Control of Their Health through E�idence- Based Pre�ention, requires use of illness self-management • Large number of programs offered in the voluntary sector (see Chapter 3) • Employer programs and policies such as Employee Assistance Programs and leave policies, e.g., availability of extended leave of absence, flex time work hours, and unscheduled leave TABLE 6-1 Continued a barrier to addressing psychosocial issues (Astin et al., 2006). Reimburse- ment policies could be structured in ways that would reward providers with the best performance in communicating with patients. Policies Addressing the Identification of Psychosocial Needs As discussed in Chapter 4, two general means are used to identify pa- tients’ psychosocial needs reliably: screening for problems, followed by an assessment, or bypassing screening and conducting a more comprehensive assessment by itself. Given the brevity of several reliable and valid screen- ing instruments (as discussed in Chapter 4) and the fact that many of these instruments can be self-administered by the patient (often in the waiting room prior to contact with the physician, also as discussed in Chapter 4), the resources required to administer such instruments may not be substan- tial, although following up on numerous, complex needs thus identified may be, as discussed below. Screening Although FFS Medicare generally does not pay explicitly and sepa- rately for screening services (except when coverage for a specific screening Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT procedure is explicitly added to the Medicare statute by congressional ac- tion), this may not be a major barrier to the performance of psychosocial screening by itself. First, the exemplar organizations described in Chapter 5 (and others identified by the committee but not discussed in this report) all perform screening and more in-depth assessment under a variety of sce- narios. These practices provide some evidence of the feasibility of screening under current policies. Second, MA private plans are not restricted to offer- ing services explicitly allowed under Medicare’s FFS statutory provisions. MA plans (especially health maintenance organization [HMO]–type plans, as opposed to preferred provider organizations [PPOs] and private FFS plans) often offer benefits beyond those in FFS Medicare, such as routine health exams, some care coordination, and eyeglasses. Managed care plans in the private sector also often offer additional services. For example, in 2005 Aetna began an initiative offering financial incentives to primary care physicians to identify and care for certain health plan enrollees with depres- sion. Primary care physicians who serve Aetna enrollees are trained in the use of the Patient Health Questionnaire-9 (PHQ-9) depression screening tool, are supplied with care management resources designed to support patients and primary care providers, and have access to mental health specialists for collaborative consultation (Moran, 2006). For every patient identified though screening as positive for symptoms of depression, Aetna pays the physician $15.00.4 Moreover, brief screening for some conditions takes place and is reim- bursed as part of Medicare’s FFS payment for office visits. For example, when a nurse takes a patient’s blood pressure at each routine visit, this is essentially screening for hypertension. Similarly, if a primary care provider incorporates depression screening or screening for alcohol misuse into a visit for evaluation or management of physical symptoms or an already documented medical condition, these screening services are included in Medicare’s payment for Evaluation and Management (E/M) services—one of the most commonly delivered health services. Such screening is explic- itly identified as a component of E/M services in the Current Procedural Terminology (CPT) codes5 reimbursed by all payers (public and private) (Beebe et al., 2006). 4 Personal communication, Hyong Un, MD, National Medical Director for Behavioral Health, Aetna, March 29, 2007. 5 CPT, maintained by the American Medical Association, is a listing of medical services and procedures (and an accompanying numerical code for each) used by physicians and certain other clinicians (e.g., physician assistants, nurse practitioners, and nurse midwives) to report the services and procedures they perform as part of their claims to insurers for reimbursement. CPT codes are designated by the federal government as the national standard for coding such services. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�1 Assessment of Psychosocial Needs Assessing and following up on psychosocial problems takes more time than screening; as a result, payment becomes more of an issue. In 2002, new Health and Behavior Assessment and Intervention (H/B) codes were incorporated into the CPT coding set generally used by all ambulatory health care providers when submitting a claim for reimbursement.6 At the time, these codes were described as a “paradigm shift” (Foxhall, 2000) because they allowed direct billing—by nonphysicians such as clinical psy- chologists—for psychosocial services for general medical illnesses such as diabetes or heart disease as opposed to mental illnesses. The new codes were intended to allow behavioral health specialists to address psychologi- cal, behavioral, emotional, cognitive, and social problems interfering with patients’ ability to manage their physical illnesses. Prior to the new codes, the only way to deliver such services was to submit a bill for a mental health intervention, which required a diagnosis of mental illness. Of note, when the American Psychological Association put forth its proposal for the adoption of these codes, the following pediatric oncology case study was used as one example of the range of interventions the codes were intended to capture: A 5-year-old boy undergoing treatment for acute lymphoblastic leuke- mia is referred for assessment of pain and severe behavioral distress and combativeness associated with repeated lumbar punctures and intrathecal chemotherapy administration. Previously unsuccessful approaches had included pharmacologic treatment of anxiety (Ativan), conscious seda- tion using Versed, and finally, chlorohydrate, which only exacerbated the child’s distress as a result of partial sedation. General anesthesia was ruled out because the child’s asthma increased respiratory risk to unacceptable levels. Intervention: The patient was assessed using standard questionnaires (e.g., the Information-Seeking scale, Pediatric Pain Questionnaire, Coping Strat- egies Inventory), which, in view of the child’s age, were administered in a structured format. The medical staff and child’s parents were also inter- viewed. On the day of a scheduled medical procedure, the child completed a self-report distress questionnaire. Behavioral observations were also made during the procedure using the CAMPIS-R, a structured observation scale that quantifies child, parent, and medical staff behavior.7 As defined in the 2007 CPT coding manual (Beebe et al., 2006:410–411), 6 Reimbursement generally does not take place without a code to describe accurately the service delivered. 7 Personal communication, Diane Pedulla, JD, American Psychological Association, January 5, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT Health and behavior assessment procedures are used to identify the psycho- logical, behavioral, emotional, cognitive, and social factors important to the prevention, treatment, or management of physical health problems. The focus of the assessment is not on mental health but on the biopsycho- social factors important to physical health problems and treatments. The focus of the intervention is to improve the patient’s health and well-being utilizing cognitive, behavioral, social, and/or psychophysiological proce- dures designed to ameliorate specific disease-related problems. Codes 96150-96155 describe services offered to patients who present with primary physical illnesses, diagnoses, or symptoms and may benefit from assessments and interventions that focus on the biopsychosocial factors related to the patient’s health status . . . 96150 health and behavior assessment (e.g., health-focused clinical interview, behavioral observations, psychophysiological monitoring, health-oriented questionnaires), each 15 minutes face-to-face with the patient, initial assessment 96151 re-assessment 96152 health and behavior intervention, each 15 minutes, face-to-face; individual 96153 group (2 or more patients) 9615� family (with the patient present) 96155 family (without the patient present). Each of the H/B codes refers to a 15-minute intervention; interventions requiring more time are billed by reporting multiple units of service. For example, a 30-minute assessment would be billed as two units of 96150. Currently, these codes are used most often by clinical psychologists. The use of these codes and the delivery of the behavioral health services they represent are growing. Table 6-2 shows Medicare trend data for reim- bursement of these services during 2003–2005 as reported by the American Psychological Association. All Medicare carriers now reimburse claims for services using these codes (except 96155, which Medicare does not cover). Although the extent to which private insurers and state Medicaid programs reimburse for these codes is not comprehensively tracked, in early 2007 an American Psychological Association list serve contained anecdotal reports of denial of reimbursement for these services by Medicaid, and coverage by private-sector health plans is not yet uniform.8 8 Personal communication, Alan Nessman, American Psychological Association, March 27, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� TABLE 6-2 Psychologist Claims Paid by Medicare, 2003–2005, by Type of Intervention, and Comparison 2005 Claims Paid for All Provider Types Code Description 2003 Psychologist Claims 2004 Psychologist Claims 2005 Psychologist Claims 2005 All Provider Claims 96150 H/B Assessment 50,660 74,371 78,008 90,016 96151 H/B Reassessment 51,888 47,599 18,421 21,913 96152 H/B Intervention—face- to-face, individual 136,904 245,088 291,103 300,463 96153 H/B Intervention—group (two or more patients) 9,252 16,431 17,873 34,052 96154 H/B Intervention— family (with patient present) 6,129 7,003 7,508 7,942 96155 H/B Intervention— family (without patient present) Medicare does not reimburse for this type of intervention Total 254,833 390,492 412,913 454,386 SOURCE: American Psychological Association analysis of data from the Centers for Medicare & Medicaid Services’ Physician/Supplier Procedure Summary Master File. Policies Addressing Care Planning, Linking of Patients to Psychosocial Services, Care Coordination, and Follow-Up Current Support in Fee-for-Ser�ice Reimbursement Addressing patients’ identified psychosocial needs by planning, linking patients to service providers, coordinating psychosocial with biomedical care, and following up on the receipt and effectiveness of services is pro- vided for to some extent in existing FFS reimbursement policy. Although perhaps not always recognized (Adiga et al., 2006), the CPT codes for E/M services (reimbursed by all public- and private-sector insurers) ex- plicitly (1) provide for physicians’ need to take patients’ “social history” and “relevant social factors” into account in evaluating and managing their symptom(s), condition, or illness; (2) provide for clinicians’ review of mental health status; and (3) include “coordination of care with other providers or agencies . . . consistent with the nature of the problem(s) and the patient’s and/or family’s needs” as part of their definition. These codes also acknowledge that sometimes coordination of care may be the pre- dominant purpose of an E/M visit: “When counseling and/or coordination Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT of care dominates (more than 50%) of the physician/patient and/or family encounter . . . , then time [emphasis in original] may be considered the key or controlling factor to qualify for a particular level of E/M services” (Beebe et al., 2006:8). Further, the different levels of E/M services (and con- comitant increasing payment levels) incorporate the time physicians spend before and after their face-to-face contact with patients performing such tasks as “arranging for further services, and communicating further with other professionals and the patient through written reports and telephone contact” (Beebe et al., 2006:5). This is one reason why Medicare does not reimburse separately for telephone contacts on a patient’s behalf. Although there are separate CPT codes for telephone calls of varying length, Medi- care considers this service to be bundled into the E/M CPT codes (CMS, 2006a).9 Medicare’s 2007 Payment Schedule, which went into effect on January 1, increased payments for some E/M services (e.g., code 99213, office visit for an established patient) (CMS, 2006a,b), but reduced pay- ments for others (e.g., code 99203, office visit for a new patient) (Ginsburg and Berenson, 2007). Thus, just as Medicare does not reimburse clinicians separately for the individual steps of performing a physical exam, taking a patient’s history, making a diagnosis, and developing a treatment plan, it also does not pay separately for planning for meeting nonmedical service needs, making refer- rals and otherwise linking patients with other service providers, and coor- dinating care. In the past, when most health care was dominated by acute conditions, this payment strategy may not have attracted much attention, but as the conditions addressed by health care providers are increasingly those of older adults and those with chronic illnesses, these aspects of pro- viding high-quality health care and the way clinicians are reimbursed for them are undergoing more scrutiny. Further, although E/M codes typically can be used only by physicians and other practitioners licensed to practice independently (e.g., nurse prac- titioners and physician assistants), reimbursement for E/M services could also support the costs of nurses, social workers, or other personnel (e.g., pa- tient navigators) employed by medical practices to assist in coordinating the care of their patients (MEDPAC, 2006). This potential exists by virtue of the way in which Medicare determines the rates it pays for E/M services. 9 Reimbursement for telephone calls is problematic for other reasons. First, for both pro- vider and payer, the costs of submitting, paying, and collecting on claims for reimbursement of calls would in many cases likely be greater than the reimbursement itself. Second, major difficulties are involved in ensuring financial integrity (i.e., auditing the number and length of calls). Third is the risk of “moral hazard”—an insurance concept denoting the phenomenon that occurs when an event is in the control of the insured, and the insured may wish the event (e.g., telephone calls) to occur. In such cases, the event does not well lend itself to the statistical principles that govern insurance (Berenson and Horvath, 2003). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� The amount Medicare pays for a specific physician service is based in part on the relative value units (RVUs) Medicare assigns to that service compared with other types of physician services. (There are more than 7,000 Medicare-covered services, each with its own assigned RVUs.) Each service’s RVUs are a composite of three factors: (1) the time and intensity of the direct work performed by physicians (or other practitioners licensed to practice independently) to provide the service (Work RVUs); (2) the practice expenses (PEs) associated with the service, such as costs of office space, supplies, equipment, and other clinical and administrative staff (PE RVUs); and (3) professional liability insurance RVUs.10 To the extent that all physicians’ clinical practices in the aggregate include nurses, medical assistants, social workers, or other support personnel who aid in planning, linking, coordinating, and following up on psychosocial service needs, this is reflected in physician PEs. Thus, to the extent that physicians typically employ such staff in their practices, Medicare indirectly reimburses for the services provided by these support personnel whenever it pays a claim for E/M services. Medicare payments then reflect what is current typical care, rather than what should be. The result is a situation in which clinicians may not want to invest in advanced work systems and personnel to provide better care because Medicare payments do not fully reimburse for them, while at the same time, Medicare payments do not well reimburse for these expenditures in part because physicians are not typically making them. Limitations of Fee-for-Ser�ice Reimbursement Despite the inclusion of care coordination functions in the definition of E/M codes, the potential to capture the costs of care coordination activities performed by other clinical and administrative personnel as part of physi- cians’ PEs, the increase in Medicare reimbursement for some E/M services that took place in January 2007, and the adequacy of Medicare payment rates for physician services overall (MEDPAC, 2007), FFS payments may reimburse inadequately for the costs of planning, linking, coordination, and follow-up for several reasons. First, the care coordination work included in the definition of each E/M code refers only to the work performed by the physician or other licensed clinician with independent billing privileges (e.g., nurse practitioner). The time spent on this work by other support personnel may not be used to determine clinicians’ billing for E/M services. Moreover, for Medicare, the practice expense portion of reimbursement 10 Medicare’s actual payment rate for each E/M CPT code is then determined by an equa- tion that assigns a dollar amount to the individual RVU (a monetary “conversion factor”), multiplied by a geographic adjustment factor to account for cost variations in different geo- graphic areas. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT is based on survey data, with the aim of identifying the current typical practice expenses of physicians in general. To the extent that assistance with planning, linking, coordination, and follow-up on needed psychoso- cial services is currently limited in physician practices in general, estimates of the associated physician practice expenses will be limited as well. This situation financially penalizes practices that have in place mechanisms and personnel to help address patients’ psychosocial needs; these practices will be reimbursed the same amount as those that have not taken such steps or have done so to a lesser degree.11 Perhaps most important, experts have identified some fundamental limitations in the data sources and approaches used to calculate Medicare payment rates that have resulted in erosion of payment rates for E/M services over time (Ginsburg and Berenson, 2007). Because of the above limitations of indirect reimbursement for plan- ning, linking, coordination, and follow-up activities, some advocate that Medicare and other private insurers reimburse directly for explicit case management or care coordination services. Medicare FFS does not do so at present, and clinical practices participating in The Robert Wood Johnson Foundation’s Depression in Primary Care Initiative found that likewise, “Few, if any explicit care management billing codes are recognized by third party payers, especially private insurers” (Bachman et al., 2006:280). Moreover, it is not clear to what extent insurers that do reimburse for case management services do so for the full array of psychosocial health services, rather than paying for a benefit that includes only coordination of biomedi- cal care from multiple providers or a more limited array of services. Several fundamental issues would need to be resolved if explicit reim- bursement for case management/care coordination were to be implemented. First, the subset of patients for whom such services would be reimbursed would need to be identified. All patients with psychosocial health care needs require some degree of planning, linking, coordination, and follow-up, and this level of service is provided for in the construct of E/M services as de- scribed above. Most case management/care coordination initiatives target individuals with higher-than-average needs, sometimes with the expectation that the added services will generate lower costs. How should the subset of individuals for whom additional reimbursement is required be identified? Moreover, the entity that is to assume responsibility for coordinating care would need to be identified. This entity might vary by the characteristics of 11 Conversely, if tomorrow all physicians identified attention to patients’ psychosocial health needs as integral to the provision of medical care and put in place mechanisms to address these needs, the practice expenses associated with doing so could be captured in the data sources Medicare uses to estimate practice expenses, and this could lead to an increase in payment rates. However, since Medicare payments are based on the value of each service “relative” to another, when relative values (and payments) increase for some services, they decrease for others. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� the physician group providing care, such as the size of its patient population and the degree to which information technology is present in the practice to support care coordination. Finally, the extent to which case management payment should be placed at risk would have to be addressed. Otherwise, Medicare would need to define the specific set of care coordination activities to be reimbursed, how they could be delivered, and who would be eligible for payment (MEDPAC, 2006). Support from Capitated Payment Capitated payment is a more flexible mode of reimbursement than FFS that may better promote planning, linking, coordination, and follow-up ac- tivities (Berenson and Horvath, 2003; Bodenheimer et al., 2004; MEDPAC, 2006). This is because payment is made not for an isolated visit or proce- dure, but for the care of each health plan member for the entire period in which he or she is enrolled in the plan. Although payment is made for the provision of a defined benefit package, capitated health plans frequently offer extra services and benefits (often tailored to members’ level of risk) to better manage the care of their enrollees and improve health outcomes, which also may result in cost savings. Although there is no database that comprehensively documents the prevalence of these practices, America’s Health Insurance Plans (AHIP) reports that health plans are increasingly using administrative data and predictive modeling to identify individuals most in need of additional support services, and then planning, linking to, coordinating, and following up on services through such mechanisms as health advocacy, social work, case management, and disease management services. Some of these services specifically target individuals with cancer (AHIP, 2007). Other Policy Support Public- and private-sector group purchasers and insurers are continu- ing to implement and test better ways to plan, link, coordinate, and follow up on needed care (although attention to psychosocial care is not always as evident in these initiatives as is the coordination of biomedical care delivered by different clinicians) (see, e.g., MEDPAC, 2006; AHIP, 2007). In 2006, for example, 26 percent of U.S. employers with three or more employees who offered health benefits to their workers included one or more disease management programs in their health plan with the largest enrollment (Claxton et al., 2006). A 2002 survey of the nation’s managed care plans found that nearly all health plans offered some type of disease management program for some members (AHIP, 2004). The voluntary sec- tor is also implementing programs to help fill this gap, such as the patient Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT navigator program described in Chapter 4. Medicare in particular is imple- menting several care coordination demonstration projects to inform efforts to develop better support for planning, linking, coordinating, and following up on the delivery of necessary psychosocial health services (see Box 6-1). However, many of these initiatives assume that better care coordination will result in lower costs, and it is not clear whether better health care and health outcomes will do so. Many of these programs also target conditions other than cancer. Policies Addressing Support for Illness Self-Management Some support for illness self-management is provided for in the H/B codes discussed earlier in this chapter. Some support also is found in the E/M codes, which define “counseling” as part of an E/M visit. “Counseling” is defined as “discussion with a patient and/or family concerning one or more of the following areas: . . . instructions for management (treatment) and/or follow up, importance of compliance with chosen management (treat- ment options), risk factor reduction, patient and family education” (Beebe et al., 2006:1). Other separate CPT codes (98960, 98961, and 98962) are established for more focused “Education and Training for Patient Self- Management” on a one-to-one basis and for group programs. These codes are intended to report “educational and training services prescribed by a physician and provided by a qualified nonphysician health care professional using a standardized curriculum. . . . The qualifications of the nonphysi- cian healthcare professionals and the content of the educational training programs must be consistent with guidelines or standards established or recognized by a physician society, nonphysician health care professional society/association, or other appropriate source” (Beebe et al., 2006:418). It is not known how many private insurers reimburse for this code, although, as with the provision of planning, linking, coordination, and follow-up on services, many health plans offer other forms of support to their enrollees in managing some aspects of some illnesses (AHIP, 2004, 2007). Medicare pays for separate illness self-management programs for diabetes only. As discussed in Chapters 3 and 4, illness self-management programs that have been tested empirically generally have not focused on cancer. Instead, they have addressed other illnesses more traditionally viewed as chronic and involving uniform patient interventions that must be performed on a regular basis, such as monitoring blood glucose levels (diabetes) or measuring peak flow volume (asthma). Many programs designed to help cancer patients adopt healthful behaviors, manage the side effects of their illness and treatment, and improve their health also are offered in the vol- untary sector (see Chapter 3). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� BOX 6-1 Medicare Care Coordination Demonstration Projects Medicare Health Support Demonstration. In this ongoing demonstration (au- thorized in 2003), the Centers for Medicare & Medicaid Services (CMS) entered into agreements with eight organizations to test disease management and other approaches to care coordination to see whether they could improve the quality of care and life for people who have heart failure and/or complex diabetes among their chronic conditions. This demonstration represents the first time a large-scale initiative of this type has been tried in fee-for-service (FFS) Medicare. Its design randomizes participants into intervention and control groups. Each participating organization offers self-care guidance and support to beneficiaries to help them manage their health, adhere to their physicians’ plans of care, and ensure they know when to seek medical care. Organizations also are required to assist partici- pants in managing their health holistically, including all comorbidities and relevant health care services, in a manner that is responsive to any unique individual needs (CMS, undated). Each organization is paid a prospective fee for the care coordina- tion that is at partial risk if targeted savings are not achieved (MEDPAC, 2006). Physician Group Practice Demonstration. This first pay-for-performance initia- tive for physicians under the Medicare program is testing whether performance- based payments would result in better care. During the 3-year project, CMS will reward physician groups that improve patient outcomes by coordinating care for chronically ill and high-cost beneficiaries. Because they will share in any finan- cial savings that result, the groups have incentives to use care management strategies that, based on clinical evidence and patient data, can improve patient outcomes and lower total medical costs. Performance payments will be derived from savings expected through improvements in care coordination for an assigned beneficiary population; by law the demonstration is required to be budget neutral. Approaches to be used for better care coordination include disease management and case management services, improved access to care and providers, and use of electronic medical records and disease registries (CMS, 2007). Care Management for High-Cost Beneficiaries. This 3-year demonstration, begun in 2005, is designed to test approaches to helping Medicare beneficiaries with complex medical needs achieve better health outcomes through improved care coordination. In addition to providing traditional FFS Medicare benefits, participating health care organizations offer a variety of additional services to coordinate care, including home visits, in-home monitoring devices, electronic medical records, self-care and caregiver support, education and outreach, track- ing and reminders of individuals’ preventive care needs, 24-hour nurse telephone lines, behavioral health care management, and transportation services. Organiza- tions receive a monthly fee for each beneficiary to cover their administrative and care management costs; however, they are at financial risk if they do not meet established performance standards for achieving cost savings. Participating or- ganizations also have the flexibility to stratify targeted beneficiaries according to risk and need and to customize interventions to meet individuals’ personal needs (CMS, 2005b). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT SUPPORTS FOR AND CONSTRAINTS ON SERVICE AVAILABILITY In addition to the policy support for interventions aimed at delivering psychosocial services described above, policies need to support the avail- ability and accessibility of the various services patients require. Multiple health and human services sectors of the U.S. economy are involved in ei- ther directly delivering or providing for these services. They include govern- ment purchasing and insuring programs, such as Medicare and Medicaid; private-sector purchasers and insurers; the large voluntary sector, including voluntary services provided by health care organizations, such as hospitals, that otherwise require reimbursement for their services; programs offered by federal and state government agencies, such as the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), and state health departments; and the informal support system of family, friends, and other social networks that provide supportive services. Addi- tionally, many services are available for purchase in the marketplace. Policies Supporting Service Availability Table 6-3 lists some of the psychosocial services available from the various sectors cited above, which together form a comprehensive array of such services. Several features of this array are particularly noteworthy. First is the complexity of the providers and the services they offer, which underscores the need for policy support for care coordination and care navigator services, as discussed in Chapter 4 and above. The large role of the voluntary sector also is clear, highlighting the invaluable role played by this sector in cancer care (see also Tables 3-2 and 3-3 in Chapter 3). This partial listing of available services also counters the potential concern that “there is no point in identifying individuals who need psychosocial services because there is nothing to offer them.” The voluntary sector has striven to ensure the availability of substantial psychosocial services for patients with cancer and their families, and the committee concurs with an earlier IOM report that found a “wealth of cancer-related community support services” (IOM and NRC, 2006:229). The important role of family and other informal supports in provid- ing critically needed services such as transportation and assistance with activities of daily living also is visible, especially in light of the limited availability of these services from other sources. Policies need to support these informal supports for several reasons. First, informal caregivers often know the patient best, and can tailor their support to the patient’s unique needs and preferences. Their service to the patient often comes from their personal love or affection, which a business or regulatory model of care Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�1 cannot match. Further, informal supports are a major source of emotional and other support. A nationally representative study of individuals aged 70 or older found that those treated for cancer received an average of 10 hours of help in activities of daily living from informal caregivers per week, at an estimated annual cost (in 1998 dollars) of $1,200 per patient and just over one $1 billion nationally. The economic worth of caregiving is actually likely higher, as these estimates do not include costs of caring for patients younger than 70, those residing in a nursing home, and those not being treated for their cancer. Estimates also do not include a number of other costs, including those of addressing limitations not experienced by individuals “most of the time” (Hayman et al., 2001). If informal supports were unable to continue providing these services, the costs to patients and to the health care system would be sizable. Yet despite the widely accepted importance of supporting caregivers in carrying out this role, as discussed in Chapter 3, how best to accomplish this is a question not yet well answered by research. Policies Constraining Service Accessibility A final observation on the availability of services as illustrated in Table 6-3 is the extent to which “with limits” or “coverage depends on policy” describes the availability of mental health care. The lack of health insurance generally, greater limits placed on mental health benefits, and restrictions on access to some mental health providers can be a serious impediment to receipt of mental health services. Absent or Inadequate Insurance Co�erage An estimated 44.8 million Americans (15.3 percent of the population) were without health insurance in 2005 (U.S. Census Bureau, 2007), and many more have only modest insurance coverage, coupled with an income level that limits their ability to pay health care costs out of pocket. The adverse effects of no or inadequate insurance are well documented and include poorer health, delayed treatment, and worse outcomes of medical treatment for people with cancer as well as other diseases (IOM, 2002). Even for those who are fully insured, coverage for mental health services is frequently more limited than that for other medical conditions. In 2002, 2 percent of workers with employer-sponsored health insurance did not have a mental health benefit. Of the 98 percent that had coverage, 74 percent had limits on the number of outpatient visits they could make in a year, and 22 percent had to pay a higher copayment for a mental health visit than for a general medical visit (Barry et al., 2003). Medicare similarly requires higher Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT TABLE 6-3 Some Availability of Psychosocial Services in Health and Human Services Sectors and from Informal Supports Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Provision of Information (e.g., on cancer-related treatments, health, and psychosocial services) Widely available from many voluntary organizations (see Table 3-2 in Chapter 3) Varies by provider National Cancer Institute and other federal programs, e.g., Administration on Aging, Veterans Health Administration Peer Support for People with a Cancer Diagnosis Widely available Some availability Some availability Counseling/ Psychotherapy Covered benefit with limits Covered benefit with limits Coverage depends on policy Some counseling available Can be purchased Veterans Health Administration Pharmacological Management of Mental Symptoms Covered benefit with limits Covered benefit with limits Coverage depends on policy Can be purchased Veterans Health Administration Health Behavior Interventions Included as part of Evaluation and Management (E/M) services, Health and Behavior (H/B) Interventions, and additional services from managed care plans Much support Varies by provider Can be purchased Centers for Disease Control and Prevention initiatives Medical Supplies Some coverage Some coverage Coverage depends on policy Some supplies provided at no charge Can be purchased A source of financial resources for purchase Transportation Some coverage in almost all states Some support Can be purchased Area Agencies on Aging Available Family and Caregiver Support Family education included as part of E/M services, services from managed care plans Much support Can be purchased Assistance with Activities of Daily Living (ADLs) Part-time or intermittent assistance reimbursed under certain circumstances Some reimbursement under Medicaid’s “personal care” benefit and state- specific waivers of federal law Not typically covered unless insured has long-term care insurance Can be purchased Area Agencies on Aging A substantial resource for these services Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� TABLE 6-3 Some Availability of Psychosocial Services in Health and Human Services Sectors and from Informal Supports Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Provision of Information (e.g., on cancer-related treatments, health, and psychosocial services) Widely available from many voluntary organizations (see Table 3-2 in Chapter 3) Varies by provider National Cancer Institute and other federal programs, e.g., Administration on Aging, Veterans Health Administration Peer Support for People with a Cancer Diagnosis Widely available Some availability Some availability Counseling/ Psychotherapy Covered benefit with limits Covered benefit with limits Coverage depends on policy Some counseling available Can be purchased Veterans Health Administration Pharmacological Management of Mental Symptoms Covered benefit with limits Covered benefit with limits Coverage depends on policy Can be purchased Veterans Health Administration Health Behavior Interventions Included as part of Evaluation and Management (E/M) services, Health and Behavior (H/B) Interventions, and additional services from managed care plans Much support Varies by provider Can be purchased Centers for Disease Control and Prevention initiatives Medical Supplies Some coverage Some coverage Coverage depends on policy Some supplies provided at no charge Can be purchased A source of financial resources for purchase Transportation Some coverage in almost all states Some support Can be purchased Area Agencies on Aging Available Family and Caregiver Support Family education included as part of E/M services, services from managed care plans Much support Can be purchased Assistance with Activities of Daily Living (ADLs) Part-time or intermittent assistance reimbursed under certain circumstances Some reimbursement under Medicaid’s “personal care” benefit and state- specific waivers of federal law Not typically covered unless insured has long-term care insurance Can be purchased Area Agencies on Aging A substantial resource for these services continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Legal Services (e.g., regarding the Americans with Disabilities Act, the Family and Medical Leave Act, wills, power of attorney, disposition of assets) Some availability (e.g., Cancer Legal Resource Center); some in defined geographic areas (e.g., Legal Information Network for Cancer in Virginia) Can be purchased Some Area Agencies on Aging Cognitive and Educational Assistance Covered as needed for persons under age 21 under the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit Reports of inconsistent coverage of pediatric neurocognitive evaluations An Individual Education Program (IEP) and services available to children with disabilities under the Individuals with Disabilities Education Act (IDEA) Financial Planning, Counseling, and Management of Day-to-Day Activities (e.g., bill paying) Limited availability Can be purchased Some Area Agencies on Aging Day-to-day financial management assistance available, depending on individual’s informal supports Insurance Counseling (e.g., health, disability) Limited availability Eligibility Assessment/ Counseling for Other Benefits (e.g., Supplemental Security Income [SSI]/Social Security Disability Insurance [SSDI]) Eligibility assessment as part of the specific government programs TABLE 6-3 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Legal Services (e.g., regarding the Americans with Disabilities Act, the Family and Medical Leave Act, wills, power of attorney, disposition of assets) Some availability (e.g., Cancer Legal Resource Center); some in defined geographic areas (e.g., Legal Information Network for Cancer in Virginia) Can be purchased Some Area Agencies on Aging Cognitive and Educational Assistance Covered as needed for persons under age 21 under the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit Reports of inconsistent coverage of pediatric neurocognitive evaluations An Individual Education Program (IEP) and services available to children with disabilities under the Individuals with Disabilities Education Act (IDEA) Financial Planning, Counseling, and Management of Day-to-Day Activities (e.g., bill paying) Limited availability Can be purchased Some Area Agencies on Aging Day-to-day financial management assistance available, depending on individual’s informal supports Insurance Counseling (e.g., health, disability) Limited availability Eligibility Assessment/ Counseling for Other Benefits (e.g., Supplemental Security Income [SSI]/Social Security Disability Insurance [SSDI]) Eligibility assessment as part of the specific government programs TABLE 6-3 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Financial Assistance Pays for some health care for those over age 65 or with disabilities who have made social security payments Pays for some health care for certain categories of persons with low income Approximately 85% of Americans have some health insurance to help pay certain acute health care costs; far fewer have short- and long-term disability insurance Very limited availability from voluntary organizations (e.g., American Cancer Society, CancerCare, The Leukemia and Lymphoma Society, Patient Advocate Foundation) Limited free and reduced-cost health care at some hospitals under Hill- Burton Act Federal SSI and SSDI programs provide limited funds to certain disabled persons Some provided by informal supports TABLE 6-3 Continued cost sharing for outpatient mental health care (50 percent)12 compared with general medical visits (20 percent). This situation has substantial implications for the receipt of psycho- social services. When people without insurance need treatment for cancer, they must begin a search to locate health care providers in their commu- nity who will treat them at no or reduced cost, are willing to work out a payment plan, or some combination of these.13 Once they are successful in locating such a provider, they may be unlikely to have the energy, time, or other resources to repeat the search to locate another provider who will provide mental health services on a similar basis—services they may not even anticipate needing at the outset of their illness. Grateful to the provider of their biomedical treatment, they may be unwilling to ask the facilitator of those services to subsidize as well the cost of any mental health services. Heavy out-of-pocket costs for the biomedical treatment of their cancer may also make them less willing to seek out mental health services, which they may view as of lower priority than the treatment of their life-threatening cancer. As a consequence, they are at risk of foregoing those services. Members of the American Psychosocial Oncology Society (APOS) report the frequent failure of patients with cancer to pursue or continue mental health care because of limited insurance coverage (APOS, 2007). 12 However, visits for medication management require only a 20 percent copayment. 13 See, for example, http://www.natlbcc.org/nbccf/access/affordable.html or http://www. breastcancer.org/faq_insurance.html. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� Service Medicare Medicaid/ SCHIP Private Insurance Voluntary Sector Health Care Providers (nonreimbursed) Out-of-Pocket Purchase Other Government Programs Informal Supports Financial Assistance Pays for some health care for those over age 65 or with disabilities who have made social security payments Pays for some health care for certain categories of persons with low income Approximately 85% of Americans have some health insurance to help pay certain acute health care costs; far fewer have short- and long-term disability insurance Very limited availability from voluntary organizations (e.g., American Cancer Society, CancerCare, The Leukemia and Lymphoma Society, Patient Advocate Foundation) Limited free and reduced-cost health care at some hospitals under Hill- Burton Act Federal SSI and SSDI programs provide limited funds to certain disabled persons Some provided by informal supports TABLE 6-3 Continued The committee notes that in the first half of 2007 (when this report was being written) there was renewed interest in Congress in expanding health insurance to all Americans, and legislation had been introduced in both houses of Congress to achieve comparable coverage of mental and general health care by health insurance (S 558, Mental Health Parity Act of 2007, and HR 1424, Paul Wellstone Mental Health and Addiction Equity Act of 2007). The committee strongly endorses action on this issue. Restricted Access to Mental Health Clinicians with Special Expertise or Those Located at the Site of Cancer Care Even when insurance covers mental health services, the ability of a pa- tient to access appropriate mental health care conveniently can sometimes be hindered. Insurance for mental health services is often provided by a health plan that limits the clinicians included as part of the network of pro- viders available to those it insures. When this happens, individual mental health care clinicians, such as psychiatrists and psychologists, who do not belong to and cannot gain admission to that network may not be able to be reimbursed for services to patients insured by the plan (APOS, 2007). This can thwart appropriate mental health care in two ways. First, individuals with complex comorbid mental health and general medical conditions (such as cancer) sometimes require mental health clini- cians with expertise in the management of these complex conditions. In the case of cancer care, for example, a high level of knowledge of cancer- Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT induced cytokine production and its relationship to depression (Raison and Miller, 2003), as well as the pharmacological treatment of such depression in the presence of a complex drug regimen for the treatment of cancer and other comorbid conditions, is required. For such situations, in 2003 ABMS approved a new subspecialty in psychosomatic medicine to address “the high prevalence of psychiatric disorders in patients with medical, surgi- cal, obstetrical and neurological conditions, particularly for patients with complex and/or chronic conditions (‘the complex medically ill’)” (Lyketsos et al., 2001:5). Although there were only 583 psychiatrists in the United States with certification in this subspecialty as of 2007,14 to the extent that these specialists are available in the community and the oncologist believes this expertise is needed to address the patient’s depression, failure of the patient’s health plan to allow these clinicians admittance to its network or otherwise provide reimbursement for their services can effectively deny the patient access to this care. Additionally, some oncology providers wish to locate mental health care clinicians within their practices. Doing so facilitates collocated, in- tegrated care—one of the recommended approaches for coordination of health care described in Chapters 4 and 5. However, if these practices’ mental health clinicians cannot receive reimbursement because they are not admitted to the insuring health plan’s network, this prevents integrated care and decreases access to mental health services for the patient. The Moffitt Cancer Center in Florida, for example, reports that some managed behav- ioral health plans will not reimburse staff mental health clinicians because they are not part of the plan’s network, but also will not allow them to become part of the network.15,16 Such problems with health plan networks are not explicitly addressed in leading accreditation standards for behavioral health plans.17 However, health plans need to consider expertise in the mental health treatment of patients with complex chronic diseases as an important competency of their provider panels. This is consistent with the findings and recommendations of other health care quality improvement initiatives (President’s Advisory Commission on Consumer Protection and Quality in the Health Care In- dustry, 1998; Shalala, 2000). 14 Personal communication, Jennifer Vollmer, American Board of Psychiatry and Neurology, September 4, 2007. 15 Personal communication, Paul B. Jacobsen, PhD, Clinical Program Leader, Psychosocial and Palliative Care Program, Moffitt Cancer Center, April 6, 2007. 16 The Rebecca and John Moores Cancer Center, University of California, San Diego, reports similar experiences, as described in Chapter 5. 17 Personal communication, Kathleen C. Mudd, MBA, RN, Vice President, National Com- mittee for Quality Assurance, April 4, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� USE OF PERFORMANCE MEASUREMENT TO IMPROVE THE QUALITY OF PSYCHOSOCIAL HEALTH CARE Even if reimbursement policies were to fully support the provision of all the psychosocial services described above, individuals being treated for cancer might still be unlikely to receive the psychosocial health services they need to manage their illness effectively. The many studies of health care quality conducted in the United States in recent years that have found widespread deficiencies in care, including underprovision of needed services (Fisher et al., 2003; McGlynn et al., 2003; Hussey et al., 2004; AHRQ, 2006), clearly show that the availability of reimbursement by itself does not ensure the provision of needed health care. Accordingly, many professional associations, payers, regulators, accrediting bodies, consumer groups, and other organizations have undertaken initiatives to report publicly on the performance of health care providers in delivering quality health care, use payments to create incentives for higher-quality care, and/or directly imple- ment quality improvement programs at the provider level. Two mecha- nisms are common to all three of these pathways to better health care: (1) measuring the attainment of certain aims of quality health care by health care providers and the health care system overall (performance measure- ment), and (2) using the results of performance measurement to leverage changes in the way health care is delivered (IOM, 2006b). Use of these two mechanisms to improve the delivery of psychosocial services to cancer patients and their families is hindered in part by the same overall problem that afflicts all of U.S. health care: the nation’s lack of “a coherent, goal oriented, consistent, and efficient system for assessing and reporting on the performance of the health care system” (IOM, 2006b:2). Certain health care organizations, group purchasers, communities, and others have nonetheless used performance measurement to achieve im- provements in the segment of the health care system they can influence. However, there are two additional obstacles to similar efforts to improve the psychosocial health care provided to patients with cancer: less well-de- veloped measures of the delivery of psychosocial health services, and a less well-developed network of organizations and partnerships to ensure the application of such measures. Measurement of Psychosocial Health Care As experts have noted, some areas of health care have better-developed performance measures than others (IOM, 2006b). Mental health care, for example, historically has been less well addressed in national performance measurement and quality improvement initiatives (IOM, 2006a), although this gap is narrowing. Performance measures for the delivery of a more Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT comprehensive array of psychosocial health services in general and for pa- tients with cancer in particular also are not very visible in major national performance measurement initiatives (see Table 6-4). Table 6-4 reveals that psychosocial health services are not typically addressed in the limited number of measures of the quality of cancer care. Although components of the model for delivering psychosocial health care described in Chapter 4 (e.g., effective patient–provider communication) and specific psychosocial health services (e.g., treatment for depression) are ad- dressed for health care overall, a well-thought-out, efficient, and strategic set of performance measures addressing psychosocial health care in general or for patients with cancer in particular is not evident. For example, there is no performance measure of the extent to which patients with cancer (or those with other chronic illnesses) have undergone screening or assessment to identify psychosocial problems. Neither are there measures of the extent to which these patients have been linked to needed services. Measurement of the quality of care does not take place only in the context of performance measurement initiatives; programs that accredit certain types of health care providers are another venue for ensuring that organizations have in place the structures and processes necessary to deliver good-quality health care. The American College of Surgeons’ multidisci- plinary Commission on Cancer, for example, sets standards for cancer care delivered primarily in hospital settings, surveys hospitals to assess compli- ance with those standards, and uses the resulting data to evaluate hospital performance and develop effective educational interventions to improve cancer care at the national and local levels (American College of Surgeons, 2007). However, no organization targets the accreditation of organizations providing ambulatory cancer care. This is problematic as most patients with cancer receive treatment on an ambulatory rather than an inpatient basis. Performance measurement is well recognized as essential to perfor- mance improvement. Measuring specific aspects of the quality of care and reporting the results back to providers is linked both conceptually and em- pirically to reductions in variations in care and increases in the delivery of effective care (Berwick et al., 2003; Jha et al., 2003). A number of organiza- tions could help develop and test measures of psychosocial health care (e.g., the National Quality Forum, the AHRQ CAHPS team), but the existence of measures alone will not be sufficient to achieve change. Structures and processes to enable use of the measures and leadership with influence over how cancer care is delivered are needed to spearhead the development and use of such measures. Means of Ensuring the Use of Performance Measures Effective performance measurement requires mechanisms for conceptu- alizing the measures, translating these concepts into technical specifications, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�1 TABLE 6-� Performance Measures of Psychosocial Health Care Adopted/ Endorsed by Leading Performance Measurement Initiatives as of July 2007 Initiative Number of Performance Measures Adopted/Endorsed Number and Description of Adopted/ Endorsed Performance Measures Addressing Psychosocial Health Care in Community Settings AQA Alliance (formerly Ambulatory Care Quality Alliance) 100 as of January 2007; 4 addressing cancer care (AQA, 2007) • None among the 4 cancer care measures • Primary care measures include 4: advising smokers to quit and asking about tobacco use, and two addressing depression medication management • Dermatology measures include 1: counseling those with new or a history of melanoma to perform a skin self-exam ASCO Quality Oncology Practice Initiative (QOPI) 52 measures as of Spring 2007 (ASCO, 2007) • 2 address discussion of chemotherapy with patient • 6 address assessment of pain • 2 address smoking cessation • 4 address enrollment in hospice Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Adult Specialty Care Questionnaire 37 basic items and additional supplemental questions • 6 supplemental questions address how well the physician communicated with the patient • 3 address shared decision making Healthplan Employer Data and Information Set (HEDIS) 73 for 2007, 3 of which are survey instruments asking about satisfaction with the experience of care (NCQA, 2007) • Follow-up after hospitalization for mental illness • Antidepressant medication management • Medical assistance with smoking cessation • Initiation and engagement of treatment for alcohol and other drug dependence • Mental health utilization: inpatient discharges and average length of stay (ALOS), percentage of health plan members receiving inpatient and intermediate care and ambulatory services • Chemical dependency utilization: inpatient discharges and ALOS • Identification of alcohol and other drug services • Medicare Health Outcomes Survey continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT Initiative Number of Performance Measures Adopted/Endorsed Number and Description of Adopted/ Endorsed Performance Measures Addressing Psychosocial Health Care in Community Settings 2006 National Health Care Quality Report 211 measures, including 15 addressing effectiveness of cancer care • Cancer-specific measures do not address psychosocial health services • 8 address effectiveness of mental health and substance abuse care • 15 address timeliness of care • 24 address patient–provider communication across conditions National Quality Forum • 6 measures for breast cancer; 4 for colorectal cancer (NQF, 2007a) • No psychosocial measures among the breast and colorectal cancer measures • 9 measures of symptom management and end-of-life care for patients with cancer (NQF, 2006) • Symptom management and end-of-life measures predominantly (8 or 9 of 9) address hospice, death, and last 30 days of life • 112 ambulatory care measures endorsed as of July 2007 for treatment of 9 noncancer conditions (e.g., asthma, diabetes), plus emergency care, geriatrics, medication management, patient experience with care, screening, and preventive care (NQF, 2007b) • Ambulatory measures for mental health address major depressive disorders, new episodes of depression, attention-deficit hyperactivity disorder, bipolar disorder, alcohol and other drug treatment • Other ambulatory care measures address tobacco cessation, physical activity, and cancer screening • Patient experience of care measures include CAHPS survey of adult specialty care and survey for children with chronic conditions TABLE 6-� Continued pilot testing the measures, ensuring calculation and submission of the measures, auditing to ensure their accuracy, analyzing and displaying mea- surement results in a format suitable for the intended audiences, and main- taining the measures’ accuracy and reliability over time (IOM, 2006a). Structures and processes for performing many of these functions already exist within the health care system. However, marshaling these resources, especially with respect to ensuring the calculation and submission of the measures, will require leadership. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� Leadership Leadership is a critical factor in the success of any major change ini- tiative or quality improvement effort (Burns, 1978; Bodenheimer et al., 2004; National Institute of Standards and Technology, 2007). Fortunately, a number of organizations that already play a leadership role in oncology have the ability to influence quality through their certifying activities, fi- nancial support, and ability to inform consumers in the marketplace. Such organizations, working together, could constitute a critical mass of leader- ship creating substantial incentives for oncology providers to improve the delivery of psychosocial health care for patients with cancer and their fami- lies by supporting the development of a small, strategic set of performance measures addressing psychosocial health care and then incorporating these measures into their organizational policies and practices. As the nation’s leader in cancer care, NCI has a number of venues through which performance measures could be used to improve psycho- social health care. NCI’s 61 designated cancer centers and comprehensive cancer centers together constitute the “centerpiece of the nation’s effort to reduce morbidity and mortality from cancer” (NCI, 2004:2) and are “char- acterized by strong organizational capabilities, institutional commitment, and trans-disciplinary, cancer-focused science; experienced scientific and administrative leadership, and state-of-the-art cancer research and patient care facilities [emphasis added]” (NCI, undated-a). NCI could encourage these facilities to set the benchmark for performance in meeting standards for psychosocial health care incorporated in the performance measures, and to measure and report their performance in providing such care. NCI’s Outcomes Research Branch also coordinates and sponsors re- search aimed at improving cancer outcomes; reducing health disparities; and reducing the cancer burden on patients, families, and society. In doing so, it coordinates and funds research and applications designed to assess, monitor, and improve the quality of cancer care, and translates research findings into products and strategies for use by public and private policy makers who provide, pay for, regulate, and set standards for cancer care (NCI, undated-b). Incorporating the development and application of per- formance measures of psychosocial health care into this agenda also could help advance the use of such measures. Leading private-sector funders of cancer research and demonstrations, such as the American Cancer Society, Lance Armstrong Foundation, and Susan G. Komen for the Cure Foundation, also could incentivize the calcu- lation and public reporting of performance measures of psychosocial health care by including questions about how organizations deliver such care in their requests for proposals, making awards based on applicants’ perfor- mance in these areas, and requiring the calculation and reporting of the Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT measures as a condition of their financial support. For example, the Lance Armstrong Foundation could require participants in its LIVESTRONG Survivorship Center of Excellence Network (Lance Armstrong Foundation, 2007) to calculate and submit the measures to a performance measures repository as part of membership in the network. Organizations supporting patients with cancer and their families as consumers in the marketplace could also use performance measures to create strong incentives for improved performance in psychosocial health care. Approved performance measures constitute de facto standards of per- formance. Publicizing the measures (even before there are any measurement results) can help educate consumers about what services to expect and ask about when they begin their cancer care. Publicizing the measures can also filter up to employers (and other group purchasers), who want the best pos- sible care for their employees facing treatment, and thereby to the insurers with whom they contract to provide coverage for health care. An Infrastructure to Support Performance Measurement As discussed above, successful performance measurement requires more than the creation of measures and an entity that will require their calcula- tion. Structures and processes are needed to transform the concepts to be measured into sets of technical specifications, pilot test the measures, audit a sample of measures to ensure their accuracy, analyze and display mea- surement results, and maintain the accuracy of measurement specifications over time. Structures and processes for performing many of these functions already exist within the health care system. The National Quality Forum, for example, working in collaboration with many of its members, has devel- oped or endorsed technical specifications for many measures across a wide variety of conditions. Accrediting bodies such as the Joint Commission and the National Committee for Quality Assurance (NCQA) serve as reposito- ries of submitted data and convert the data to formats useful to consumers and others. Consolidating a combination of organizations and resources to carry out the various performance measurement–related activities will require planning, collaboration, and perhaps financial support. This, too, will require leadership across many sectors of cancer care. CONCLUSIONS AND RECOMMENDATIONS The committee concludes that, although the policies and practices of many organizations support the delivery of several components of psy- chosocial health care, such is not always the case. Available mechanisms to compensate providers for assessments and interventions to help pa- tients manage their illness are not fully utilized by all insurers. While FFS Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� reimbursement codes take into consideration the basic need to coordinate care, FFS reimbursement does not well support processes for care coordi- nation that require additional resources. Although capitated payments to managed care plans allow better for the provision of linking services, care coordination, follow-up, and illness self-management support, these ex- amples are still considered noteworthy, rather than “usual and customary” practice. Lack of health insurance, high cost sharing for patients, and health plan policies that hinder collocated services and access to certain providers also can keep patients from receiving needed services. Solutions exist that are feasible for group purchasers of health care coverage and health plans to implement. Recommendation: Support from payers. Group purchasers of health care coverage and health plans should fully support the evidence- based interventions necessary to deliver effective psychosocial health services: • Group purchasers should include provisions in their contracts and agreements with health plans that ensure coverage and reim- bursement of mechanisms for identifying the psychosocial needs of cancer patients, linking patients with appropriate providers who can meet those needs, and coordinating psychosocial ser- vices with patients’ biomedical care. • Group purchasers should review cost-sharing provisions that affect mental health services and revise those that impede cancer patients’ access to such services. • Group purchasers and health plans should ensure that their cov- erage policies do not impede cancer patients’ access to providers with expertise in the treatment of mental health conditions in individuals undergoing complex medical regimens such as those used to treat cancer. Health plans whose networks lack this expertise should reimburse for mental health services provided by out-of-network practitioners with this expertise who meet the plan’s quality and other standards (at rates paid to similar providers within the plan’s network). • Group purchasers and health plans should include incentives for the effective delivery of psychosocial care in payment reform programs—such as pay-for-performance and pay-for-reporting initiatives—in which they participate. In the above recommendation, “group purchasers” include purchasers in the public sector (e.g., Medicare and Medicaid), as well as group pur- chasers in the private sector (e.g., employer purchasers). In recommending Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT that group purchasers include in their contracts and agreements with health plans provisions to ensure the coverage and reimbursement of mechanisms to identify psychosocial needs, link patients to psychosocial health services, and coordinate these services with biomedical care, the committee is not necessarily calling for these interventions to be reimbursed separately by group purchasers and health plans. Rather, these parties should assess the extent to which these processes are explicitly addressed in their agreements with each other and with health care providers, make these expectations explicit if they are not already so, and assess the adequacy of their payment rates for these processes. Purchasers and health plans may find, for ex- ample, that these interventions are currently provided for in their capitated payments or included to some extent in FFS reimbursements. In contrast, mechanisms may need to be developed for reimbursing higher-than-average levels of care coordination. The predictive modeling techniques now being used by some health plans can help identify when special reimbursement of or arrangements for care coordination may be called for. With respect to reimbursement of out-of-network providers when nec- essary, mental health care providers “with expertise in the treatment of mental health conditions in individuals undergoing complex medical regi- mens such as those used to treat cancer” include mental health care provid- ers who possess this expertise through formal education (such as specialists in psychosomatic medicine), as well as mental health care providers who have gained expertise though their clinical experiences, such as mental health clinicians collocated with and part of an interdisciplinary oncology practice. The recommended approach of guaranteeing access to such expertise through the use of out-of-network providers is consistent with similar recommendations of other health care quality initiatives (Shalala, 2000), including the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry (1998), whose patient Bill of Rights states: “All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay. . . . If a health plan has an insuffi- cient number or type of providers to provide a covered benefit with the ap- propriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers. Plans also should establish and maintain adequate arrangements to ensure reasonable proximity of provid- ers to the business or personal residence of their members” (p. A-31). Further, ensuring access to such providers means more than just allow- ing them to receive reimbursement; a health care provider possessing this expertise must be accessible to the cancer patient. If, for example, an indi- vidual with such expertise is collocated with the patient’s other oncology Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�� providers, this individual should be allowed to receive reimbursement pro- vided that (as specified in the recommendation above) he or she meets the plan’s quality and other standards. The provider should also accept reim- bursement at rates paid to similar providers within the plan’s network. In recognition that full implementation of the above recommendation will not by itself ensure the provision of appropriate psychosocial health services, the committee also makes the following recommendation. Recommendation: Quality oversight. The National Cancer Institute, CMS, and AHRQ should fund research focused on the development of performance measures for psychosocial cancer care. Organizations setting standards for cancer care (e.g., National Comprehensive Can- cer Network, American Society of Clinical Oncology, American Col- lege of Surgeons’ Commission on Cancer, Oncology Nursing Society, American Psychosocial Oncology Society) and other standards-setting organizations (e.g., National Quality Forum, National Committee for Quality Assurance, URAC, Joint Commission) should • Create oversight mechanisms that can be used to measure and report on the quality of ambulatory oncology care (including psychosocial health care). • Incorporate requirements for identifying and responding to psy- chosocial health care needs into their protocols, policies, and standards. • Develop and use performance measures for psychosocial health care in their quality oversight activities. The research to be funded will need to transform concepts to be mea- sured into technical specifications, pilot test the measures, audit a sample of measures to ensure their accuracy, analyze and display measurement results, and address how the accuracy and reliability of the measures will be maintained over time. The committee expects that these activities will make use of already established mechanisms and organizations that cur- rently perform these functions, but that some funding may be needed to support certain other activities, such as the initial development of the mea- sure specifications. The committee also believes that a small number of measures (five or fewer) should be targeted for development, and that these could consist of structural as well as process and outcome-of-care measures. Structural measures are typically addressed in accreditation processes and could be used to deal with such areas of concern as whether a health plan or clini- cal practice requires or uses a validated instrument or approach to identify systematically all cancer patients with psychosocial needs. Patient report Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT instruments, such as AHRQ’s CAHPS Clinician and Group Survey ques- tions, could also be used to obtain information from patients about the extent to which they were linked to needed psychosocial services and re- ceived education and training in managing their illness. 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Lucas, and E. Pinder. 2003. The implications of regional variations in Medicare spending. Part 1: The content, quality, and accessibility of care. Annals of Internal Medicine 138(4):273–287. Foxhall, K. 2000. New CPT codes will recognize psychologists’ work with physical health problems. Monitor on Psychology 31(10):46–47. Ginsburg, P. B., and R. A. Berenson. 2007. Revising Medicare’s physician fee schedule: Much activity, little change. New England Journal of Medicine 356(12):1201–1203. Hayman, J. A., K. M. Langa, M. U. Kabeto, S. J. Katz, S. M. DeMonner, M. E. Chernew, M. B. Slavin, and A. M. Fendrick. 2001. Estimating the cost of informal caregiving for elderly patients with cancer. Journal of Clinical Oncology 19(13):3219–3225. Hussey, P., G. Anderson, R. Osborn, C. Feek, V. McLaughlin, J. Millar, and A. Epstein. 2004. How does the quality of care compare in five countries? Health Affairs 23(3):89–99. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT Institute for Healthcare Communication. 2005. Case studies. http://www.healthcarecomm. org/index.php?sec=case (accessed April 13, 2007). IOM (Institute of Medicine). 1999. Ensuring quality cancer care. M. Hewitt and J. V. Simone, eds. Washington, DC: National Academy Press. IOM. 2002. Care without co�erage: Too little, too late. Washington, DC: National Academy Press. IOM. 2006a. Impro�ing the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. IOM. 2006b. Performance measurement: Accelerating impro�ement. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2006. From cancer patient to cancer sur�i�or: Lost in transition. M. Hewitt, S. Greenfield, and E. Stovall, eds. Washington, DC: The National Academies Press. Jha, A. K., J. B. Perlin, K. W. Kizer, and R. A. Dudley. 2003. Effect of the transformation of the Veterans Affairs health care system on the quality of care. The New England Journal of Medicine 348(22):2218–2227. Lance Armstrong Foundation. 2007. How network members are selected and funded. http:// www.livestrong.org/site/c.jvKZLbMRIsG/b.1537979/k.739/How_Network_Members_ are_Selected_and_Funded.htm (accessed April 11, 2007). Lyketsos, C., J. Levenson, and Academy of Psychosomatic Medicine Task Force for Subspe- cialization. 2001. Proposal for recognition of “psychosomatic medicine” as a psychiatric subspecialty. Academy of Psychosomatic Medicine. http://www.apm.org/subspecialty/ ABPNsubspecialtyproposal (accessed April 6, 2007). McGlynn, E., S. Asch, J. Adams, J. Keesey, J. Hicks, A. DeCristofaro, and E. Kerr. 2003. The quality of health care delivered to adults in the United States. New England Journal of Medicine 348(26):2635–2645. MEDPAC (Medicare Payment Advisory Commission). 2006. Care coordination in fee-for- service Medicare. In Report to the Congress: Medicare payment policy. Washington, DC: MEDPAC. MEDPAC. 2007. Report to the Congress: Medicare payment policy, March 200�. Washington, DC: MEDPAC. Moran, M. 2006. Aetna to pay for depression screening by primary care physicians. Psychi- atric News 41(2):5. National Institute of Standards and Technology. 2007. Baldrige National Quality Program: Health care criteria for performance excellence. Gaithersburg, MD: United States Depart- ment of Commerce. NCCS (National Coalition for Cancer Survivorship). 2007. Cancer sur�i�al toolbox®. http:// www.cancersurvivaltoolbox.org (accessed March 23, 2007). NCI (National Cancer Institute). Undated-a. Cancer centers program. DHHS. http://cancer- centers.cancer.gov/about/index.html (accessed April 11, 2007). NCI. Undated-b. Outcomes research: Mission of the outcomes research branch. http:// outcomes.cancer.gov/about/ (accessed April 11, 2007). NCI. 2004. Policies and guidelines relating to the cancer center support grant. http:// cancercenters.cancer.gov/documents/CCSG_Guide12_04 (accessed April 11, 2007). NCQA (National Committee for Quality Assurance). 2007. HEDIS® 200� summary table of measures and product lines. http://web.ncqa.org/Portals/0/HEDISQM/HEDIS2007/ MeasuresList (accessed April 9, 2007). NQF (National Quality Forum). 2006. National quality forum endorses consensus standards for symptom management and end-of-life care for patients with cancer. http://216.122.138.39/ pdf/news/prCancerSxEOL10-12-06 (accessed April 10, 2007). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PUBLIC- AND PRIVATE-SECTOR POLICY SUPPORT 2�1 NQF. 2007a. National Quality Forum endorses consensus standards for diagnosis and treat- ment of breast & colorectal cancer. http://www.qualityforum.org/pdf/news/prbreast- colon03-12-07 (accessed April 10, 2007). NQF. 2007b. National �oluntary consensus standards for ambulatory care. http://www. qualityforum.org/pdf/ambulatory/tbAMBALLMeasuresendorsed%2007-27-07 (ac- cessed September 4, 2007). Partnership for Clear Health Communication. Undated. Ask me �™. http://www.askme3. org/for_patients.asp (accessed April 4, 2007). President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry. 1998. Quality first: Better health care for all Americans. Final report to the President of the United States. Washington, DC: U.S. Government Printing Office. Raison, C. L., and A. H. Miller. 2003. Depression in cancer: New developments regarding diagnosis and treatment. Biological Psychiatry 54(3):283–294. Shalala, D. 2000. Report to Congress: Safeguards for indi�iduals with special health care needs enrolled in Medicaid managed care. Washington, DC: U.S. Department of Health and Human Services. U.S. Census Bureau. 2007. Census Bureau re�ises 200� and 200� health insurance co�erage estimates. Washington, DC: U.S. Department of Commerce. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� 7 Preparing the Workforce1 CHAPTER SUMMARY Psychosocial health ser�ices are deli�ered by a wide �ariety of pro�id- ers, including specialists in medical, nursing, and social work oncology; other physicians, nurses, and social workers; and a range of additional mental health professionals, such as psychologists and counselors. Al- though it is not possible to estimate the optimal supply of this workforce (indi�idually or in the aggregate) to meet the nation’s need for psychosocial health ser�ices for people diagnosed with cancer, it is clear that there cur- rently exists a large health care workforce that routinely encounters and cares for this population and can deli�er these ser�ices. Institutions concerned with the preparation of this workforce address psychosocial issues in their standards for educational accreditation and licensure. Howe�er, many of these standards are brief and general, and there are limited systems in place to collect data on how these educational standards are translated into hours, methods, or content of such instruc- tion or the resulting skills of the workforce. Consequently, it is not possible to know with certainty the characteristics of the education on psychosocial issues these health care pro�iders recei�e, or their resulting competency in assessing and addressing psychosocial health needs. To remedy educational contributions to inadequate pro�ision of psy- chosocial health care, the committee recommends that educational accred- iting organizations, licensing bodies, and professional societies examine their standards and licensing and certification criteria, and de�elop them as fully as possible in accordance with a model that integrates biomedi- cal and psychosocial care. The education of the health care workforce 1 Although (as discussed in Chapters 2 and 6) families and other informal caregivers provide substantial amounts of psychosocial health services, this chapter addresses the paid, profes- sional workforce. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT in psychosocial health needs and ser�ices could also be impro�ed by a public–pri�ate collaboration aimed at (1) identifying and supporting the implementation of strategies for collecting better information about curricular content and methods addressing psychosocial health care; (2) identifying, refining, and broadly disseminating information to health care educators about workforce competency models and curricula rele�ant to pro�iding psychosocial health ser�ices; (�) further de�eloping faculty skills to teach psychosocial health care using e�idence-based teaching strategies; and (�) strengthening accreditation standards pertaining to psychosocial health care in education programs and health care organizations. A LARGE AND DIVERSE WORKFORCE Currently, a large and diverse workforce either comes into contact with cancer patients and their families through the provision of cancer care or exists as a potential resource for these individuals. This considerably di- verse workforce comprises distinct, although at times overlapping, sectors, including (1) clinicians who are involved principally in the provision of bio- medical health care services; (2) mental health and counseling profession- als; and (3) providers of other psychosocial services, such as information, logistical or material support, and financial assistance. This latter sector includes a large volunteer and peer support component. A wide variety of licensed providers deliver some psychosocial health services: allopathic physicians (such as those practicing oncology, internal medicine, family medicine, pediatric hematology-oncology, and pediatrics), nurses, mental health professionals (such as psychiatrists, clinical psy- chologists, counselors, social workers, and pastoral counselors), and other social workers. Some of these providers deliver care exclusively to people diagnosed with cancer on the basis of their specialization in oncology or employment in programs devoted to serving these individuals. Others pro- vide care to people diagnosed with cancer as just one segment of their total patient populations. For example, a previous Institute of Medicine (IOM) report, From Cancer Patient to Cancer Sur�i�or: Lost in Transition, notes that primary care physicians provide the greatest amount of ambulatory cancer care in the United States (IOM and NRC, 2005). Tables 7-1 and 7-2 provide estimates of the numbers of selected pro- viders of various types who serve cancer patients and can play a role in either providing or ensuring the provision of psychosocial health services. Table 7-1 shows the number of physicians in various specialties certified by the American Board of Medical Specialties (ABMS)2 or with membership in 2 Initial certification, a process that evaluates the training, qualifications, and competence of physician specialists at the outset of their careers, is a major focus of ABMS and its Member Boards (Horowitz et al., 2004). Nearly 85 percent of licensed U.S. doctors are certified by at least one ABMS member board (ABMS, 2007). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� TABLE 7-1 Estimates of the Supply of Selected Physician Types Available to Provide or Ensure the Provision of Psychosocial Health Services Type of Physician Specialty Credential or Membership Status Amount Internal Medicine Board certifieda (2006) 186,868 Member of American College of Physiciansb (2006) 120,000 Family Medicine Board certifiedc (2006) 66,421 Member of American Academy of Family Physiciansd (2006) 94,000 Pediatrics Board certifiede (2005) 84,826 Member of American Academy of Pediatricsf (2006) 60,000 Psychiatry Board certifiedg (2005) 43,850 Member of American Psychiatric Associationh (2006) 35,000 Medical Oncology Board certifieda (2006) 10,016 Member of American Society of Clinical Oncologyi (2006) 20,000 Pediatric Hematology- Oncology Board certifiede (2006) 1,884 Member of American Society of Pediatric Hematology/ Oncologyj (2006) 1,000 NOTE: Estimates of board-certified physicians are based on the number of valid certificates issued, and may not accurately reflect the number of currently practicing physicians in the United States. Also, because provider types may be credentialed as well as licensed or hold more than one credential, the numbers in each category are not mutually exclusive. SOURCE: Numbers of board-certified physicians come from the aAmerican Board of Internal Medicine (ABIM, 2006a); cAmerican Board of Family Medicine (ABFM, 2006c); eAmerican Board of Pediatrics (ABP, 2006b); and gAmerican Board of Psychiatry and Neurology, Inc. (ABPN, 2006b). Professional organization membership comes from the bAmerican College of Physicians (ACP, 2006); dAmerican Academy of Family Physicians (AAFP, 2006); fAmerican Academy of Pediatrics (AAP, 2006); hPersonal communication, Lisa Corchado, American Psychiatric Association, September 4, 2007; iAmerican Society of Clinical Oncology (ASCO, 2006); and jAmerican Society of Pediatric Hematology/Oncology (ASPHO, 2006). related professional societies. Table 7-2 shows the numbers of other health care personnel—generally those licensed and credentialed by relevant pro- fessional societies. In addition to these licensed professionals, there are a host of other employed providers of psychosocial services that constitute a large and critical sector of the health care workforce. This sector includes individu- als with bachelor’s degrees, high school diplomas, or lesser education who are involved in diverse caregiver roles. They may provide information, transportation, financial advice, or case management, or may function as navigators in systems of care. They may also provide in-home support for activities of daily living and other services. Virtually no data or information is available about the numbers of these individuals or their characteristics, training, or performance. Finally, complementing the employed workforce Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT TABLE 7-2 Estimates of the U.S. Supply of Selected Nonphysician Providers Available to Provide or Ensure the Provision of Psychosocial Health Services Type of Provider Licensure or Credential Status Number Registered nurses (RNs) Licenseda (as of 2004) 2,909,357 RN with advance practice preparation and credentials in oncologya (2004) 2,573 Member of Oncology Nursing Societyb (2006) 33,000 Oncology Certified Nurse (OCNs)c (2006) 21,195 Advanced Oncology Certified Nurse (AOCN)c (2006) 1,381 Certified Pediatric Oncology Nurse (CPONs)c (2006) 1,261 Advanced Oncology Certified Nurse Practitioner (AOCNP)c (2006) 313 Advanced Oncology Certified Clinical Nurse Specialist (AOCNS)c (2006) 128 RN with advance practice preparation and credentials in psychiatry/mental healtha (2004) 19,693 Clinical nurse specialists in adult psychiatric and mental healthd (2007) 6,851 Clinical nurse specialist in child and adolescent mental healthd (2007) 988 Family psychiatric and mental health nurse practitionerd (2007) 635 Adult psychiatric and mental health nurse practitionerd (2007) 1,750 Social workers Employed social workere (2004) 562,000 Social worker employed in mental health and substance abuse servicese (2004) 116,000 Social worker employed in medical and public healthe (2004) 110,000 Social worker employed in child, family, and school social servicese 272,000 Licensed social workerf (2004) 310,000 Member of National Association of Social Workersg (2006) 149,621 Member of Association of Oncology Social Workh (2007) 1,000 Member of Association of Pediatric Oncology Social Workersi (2006) 303 Certified by the Board of Oncology Social Work Certificationj (2007) 236 Psychologists Licensedk (2004) 179,000 Member (worldwide) of American Psychological Association (APA)l (2006) 148,000 Member of APA Health Divisionm (2006) 532 Mental health counselors Licensedn (2004) 96,000 Pastoral counselors Certifiedo (2006) 3,000 NOTE: Estimates are based on the number of valid licenses or certificates issued, and may not accurately reflect the number of currently practicing providers in the United States. Because Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� provider types may be credentialed as well as licensed or hold more than one credential, the numbers in each category are not mutually exclusive. SOURCES: Number of providers and professional organization membership comes from the aHealth Resources and Service Administration (HRSA, 2006); bOncology Nursing Society (ONS, 2006); cOncology Nursing Certification Corporation (ONCC, 2006); dPersonal com- munication, Todd Peterson, American Nurse Credentialing Center, September 10, 2007; eU.S. Department of Labor (BLS, 2006d); fCenter for Health Workforce Studies and NASW Center for Workforce Studies (2006); gNational Association of Social Workers (NASW, 2006); hPer- sonal communication, Ethan Gray, Association of Oncology Social Work, September 4, 2007; iAssociation of Pediatric Oncology Social Workers (Personal communication, D. Donelson, APOSW, November 15, 2006); jPersonal communication, Kim Day, Board of Oncology Social Work Certification, September 5, 2007; kU.S. Department of Labor (BLS, 2006c); lAmerican Psychological Association (APA, 2006a); mPersonal communication, Wendy Williams, Ameri- can Psychological Association, September 5, 2007; nU.S. Department of Labor (BLS, 2006a); and oAmerican Association of Pastoral Counselors (AAPC, 2006). TABLE 7-2 Continued are numerous volunteers who also provide information, support, and other forms of assistance. Again, there is little information available about the size, nature, preparation, and functioning of this important sector of the health care workforce. This mix of different disciplines and licensed, unlicensed, and informal caregivers contributes to the difficulty of determining whether the number of workers is adequate to provide psychosocial health services. Ideally, one might want to estimate carefully the level of need for these services and then attempt to predict accurately the necessary workforce supply to meet that need. However, experts in health care workforce issues note decades of failure of efforts to estimate the size, composition, and distribution of the nation’s health care workforce (Grumbach, 2002; Snyderman et al., 2002). Even in countries with centrally managed, universal health care systems, progress in medical technology and changes in the organization of care can create large forecasting errors. Predicting workforce supply in the United States is further complicated by the fact that demand for services is not tightly controlled, and the distribution of the workforce is neither controlled nor actively shaped through reimbursement mechanisms (Reinhardt, 2002). To complicate the matter, data on health professions are not collected in a routine, standardized fashion across the multiple disciplines (Hoge et al., 2007), and the dramatic growth in selected disciplines, such as clinical psychology and counseling, has reshaped the composition of the health care workforce. Another limitation on a forecasting effort is that the same function (e.g., care coordination, case management, or patient navigation) may be carried out by different types of professionals, paraprofessionals, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT or volunteers in different organizations or systems. Thus, workforce needs are heavily influenced at the local level by the assignment of functions to providers. For these and other reasons discussed in Appendix B, the de- velopment of estimates of the overall workforce capacity required to meet psychosocial health needs through modeling or other methods was not a feasible activity for this study. Nonetheless, shortages and maldistribution of a variety of psychoso- cial health care providers, such as nurses and mental health clinicians is a long-recognized problem. In 1999, the Surgeon General’s report on mental health stated: “The supply of well-trained mental health professionals is in- adequate in many areas of the country, especially in rural areas. Particularly keen shortages are found in the numbers of mental health professionals serving children and adolescents with serious mental disorders, and older people” (DHHS, 1999:455). Echoing this statement, in 2003 the President’s New Freedom Commission on Mental Health reported: “In rural and other geographically remote areas, many people with mental illnesses have inad- equate access to care [and] limited availability of skilled care providers . . .” (New Freedom Commission on Mental Health, 2003:51). Shortages in the nursing workforce also have been well documented (HRSA, 2004). And the American Association of Medical Colleges estimates that the growing need for cancer care will soon outstrip the supply of oncologists, and predicts a shortage by 2020 (Erikson et al., 2007). WORKFORCE EDUCATION IN BIOPSYCHOSOCIAL APPROACHES TO CARE In addition to its numbers, the capacity of the health care workforce is determined by its knowledge, skill, and overall ability to deliver psy- chosocial health services. As described in previous chapters, this ability is influenced in part by how work in clinical practices is designed (Chapters 4 and 5) and how incentives from payers and oversight organizations operate (Chapter 6). However, the content and methods of professional education and training also affect the workforce’s understanding and appreciation of the interrelatedness of biological, psychological, and social factors in influencing health, as well as its knowledge and skill in detecting and responding to adverse psychosocial stressors. Although most professions have developed educational standards addressing psychosocial issues, it is unclear how these standards have been translated into educational curricula and more important, whether they create the competencies needed in the health care workforce to meet psychosocial health needs effectively. Professional education should prepare licensed clinicians to recognize and address psychosocial health needs just as they do biomedical needs. The education of mental health and social service professionals should Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� also impart knowledge of and skills in addressing the effects of general medical illnesses on mental health and comorbid mental illnesses and on social needs. While the biopsychosocial model of health care has long been advocated (Engel, 1977), the extent to which this model is adequately implemented in educational curricula is unclear. Licensing and continuing education requirements and credentialing standards pertaining to psycho- social factors also are unclear and appear to be limited, with variations across professions. Physicians Education, training, and licensing requirements to practice medicine in the United States typically include graduating from college with an under- graduate degree; receiving an additional 4 years of undergraduate education at a medical school; passing a licensing examination; and completing up to 8 years of residency training, depending on a physician’s chosen specialty (BLS, 2006b). Undergraduate Medical Education The IOM committee that authored the 2004 IOM report Impro�ing Medical Education: Enhancing the Beha�ioral and Social Science Con- tent of Medical School Curricula found that “existing national databases provide inadequate information on behavioral and social science content, teaching techniques, and assessment methodologies. This lack of data im- pedes the ability to reach conclusions about the current state and adequacy of behavioral and social science instruction in U.S. medical schools.” The committee recommended that the “National Institutes of Health’s Office of Behavioral and Social Sciences Research should contract with the Associa- tion of American Medical Colleges to develop and maintain a database on behavioral and social science curricular content, teaching techniques, and assessment methodologies in U.S. medical schools. This database should be updated on a regular basis” (IOM, 2004a:7). This recommendation has not been implemented.3 Accreditation of medical schools is conducted by the Liaison Commit- tee on Medical Education (LCME), sponsored jointly by the Association of American Medical Colleges (AAMC) and the American Medical As- sociation. Although LCME accreditation is “voluntary,” it is required for “schools to receive federal grants for medical education and to participate in federal loan programs” (LCME, 2006b). Box 7-1 displays LCME ac- creditation standards that address psychosocial health services. The stan- 3 Personal communication, M. Brownell Anderson, AAMC, November 9, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�0 CANCER CARE FOR THE WHOLE PATIENT dards intentionally are broad in scope to afford schools flexibility in the way they meet them.4 Each medical school defines its own curricular objectives (LCME, 2006a). In 1996, however, AAMC initiated the Medical School Objectives Project (MSOP) (AAMC, 1998) “to reach general consensus within the medical education community on the skills, attitudes, and knowledge that graduating medical students should possess” (AAMC, undated). The MSOP guidelines state, in part, that graduates must demonstrate “knowledge of the important non-biological determinants of poor health and of the eco- nomic, psychological, social, and cultural factors” that contribute to the development or continuation of ill health (AAMC, 1998:8). Yet neither the LCME standards nor the MSOP guidelines specify explicitly how to teach these subjects, how many hours should be devoted to their study, or what topics related to psychosocial health services should be covered. The extent to which the MSOP guidelines are being fulfilled is unclear. A national survey of U.S. medical schools5 conducted between 1997 and 1999 found that the concepts and measurement of such psychosocial factors as stress and social support were taught by 80 to 93 percent of schools (most often in required courses), but that psychosocial topics repre- sented on average 14 percent of curricula (range from 1 to 60 percent), and 4 Personal communication, Robert Eaglen, PhD, LCME/AAMC, October 10, 2006. 5 46 percent response rate. BOX 7-1 LCME Undergraduate Medical Education Accreditation Standards That Address Psychosocial Health Services • ED-7. It [the curriculum] must include current concepts in the basic and clinical sciences, including therapy and technology, changes in the understanding of disease, and the effect of social needs and demands on care. • ED-10. The curriculum must include behavioral and socioeconomic sub- jects, in addition to basic science and clinical disciplines. • ED-13. Clinical instruction must cover all organ systems, and include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care. • ED-19. There must be specific instruction in communication skills as they relate to physician responsibilities, including communication with patients, families, colleagues, and other health professionals [emphasis added]. SOURCE: LCME, 2006a. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�1 only 37 percent had a written curriculum on these topics. Student interest in and appreciation of the subject was mixed. About 50 percent of medical schools endorsed less than 40 hours of total instruction in psychosomatic/ behavioral medicine out of the 7,000–8,000 hours in the average medical school curriculum. The researchers concluded that the degree of coverage of the subject in undergraduate medical education appeared variable, but generally was unknown and difficult to assess (Waldstein et al., 2001). AAMC’s online Curriculum Management and Information Tool (CurrMIT) currently serves as the database for tracking teaching techniques and assess- ment methodologies for these topics.6 Although CurrMIT aids in analyzing curricular content, it is a voluntary system. About one-third of accredited U.S. medical schools are not actively entering data into the system. Further, medical schools that participate have flexibility in data entry, and as a re- sult, the data submitted vary in detail from school to school.7 As reported above, a 2004 IOM report found that existing national databases provide inadequate information on behavioral and social science content, teaching techniques, and assessment methodologies in U.S. medical schools. Medical students’ clerkship experiences and opinions reflect some satis- faction with current education and training in psychosocial health services (Yuen et al., 2006). In the 2006 Medical School Graduation Questionnaire, 86.5 percent of students reported receiving “appropriate” instruction in behavioral sciences (AAMC, 2006b).8 Yet some medical students, residents, and practicing physicians have reported inadequate medical education on the role of psychosocial factors in health (Astin et al., 2005, 2006), which is related to clinicians’ attention to psychosocial issues in their practices (Astin et al., 2006). Medical Licensure To practice legally as a physician, medical students must pass the three-step U.S. Medical Licensing Examination (USMLE). Step 1 of the exam (usually taken after the second year in medical school) assesses basic science knowledge according to general principles and individual organ systems. Approximately 10–20 percent of Step 1 addresses “behavioral considerations affecting disease treatment and prevention, including psy- chosocial, cultural, occupational and environmental” (USMLE, 2006:7). Box 7-2 shows the subtopics in the Step 1 exam that address psychosocial 6 Personal communication, M. Brownell Anderson, AAMC, November 9, 2006. 7 Personal communication, Robby Reynolds, AAMC, October, 23, 2006. 8 In the 200� All Schools Report, the question was, “Do you believe that the time devoted to your instruction in the following areas was inadequate, appropriate, or excessive?” (n= 11,417); 9.2 and 4.4 percent, respectively, rated the time as “inadequate” or “excessive” (AAMC, 2006b). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�2 CANCER CARE FOR THE WHOLE PATIENT health services. However, such test questions would most likely be woven together with questions dealing with chronic diseases instead of making up a separate section devoted to psychological and social factors.9 Similarly, Step 2 of the exam (usually taken after the fourth year of medical school) does not explicitly cover psychosocial health services, but a “broad spectrum of cases reflecting common and important symptoms and diagnoses” (USMLE, 2006:9). It tests clinical knowledge and communica- tion and interpersonal skills using standardized patients.10 Approximately 15–20 percent of the exam addresses “promoting preventive medicine and health maintenance,” as in the assessment of risk factors and application of preventive measures, and approximately 15–25 percent addresses “applying principles of management,” as in the care of people with chronic and acute conditions in ambulatory and inpatient settings (USMLE, 2006:8). Step 3 of the exam may cover psychosocial health services since “test items and cases reflect the clinical situations that a general, as yet undifferentiated, physician might encounter within the context of a specific setting” (FSMB and NBME, undated-b). 9 Personal communication, G. Dillon, National Board of Medical Examiners, October 10, 2006. 10 USMLE Step 2 assesses whether candidates can “apply medical knowledge, skills, and understanding of clinical science essential for the provision of patient care under supervision and includes emphasis on health promotion and disease prevention” (USMLE, 2006:2). BOX 7-2 General Principles of Gender, Ethnic, and Behavioral Considerations for USMLE Step 1 Psychologic and social factors influencing patient behavior: • personality traits or coping style, including coping mechanisms • psychodynamic and behavioral factors, related past experience • family and cultural factors, including socioeconomic status, ethnicity, and gender • adaptive and maladaptive behavioral responses to stress and illness • interactions between the patient and the physician or the health care system • patient adherence, including general and adolescent SOURCE: FSMB and NBME, undated-a. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� Graduate Medical Education Medical school graduates seeking to receive board certification or enter independent practice must complete graduate medical education (GME, or residency training programs) of up to 8 years in length, depending on their specialty. Recognizing that the current teaching models focus more on accommodating biomedical content than on improving patient care (Leach, 2001), the Accreditation Council for Graduate Medical Education (ACGME), which accredits residency programs and sets their curricular standards, developed the Outcome Project (ACGME, 2007a)—a long-term effort to enhance the effectiveness of residency education and accreditation by increasing the emphasis on outcomes. The desired outcomes are fo- cused on demonstrated competencies among physicians in training. Box 7-3 shows the “minimum language” version of the six general competencies endorsed by ACGME in 1999. Internal Medicine Residency and Medical Oncology Subspecialty The American Board of Internal Medicine (ABIM) requires candidates for BOX 7-3 General Competencies of the ACGME Outcome Project 1. Patient care that is compassionate, appropriate, and effective for the treatment of health problems and the promotion of health 2. Medical knowledge about established and evolving biomedical, clinical, and cognate (e.g., epidemiological and social-behavioral) sciences and the ap- plication of this knowledge to patient care 3. Practice-based learning and improvement that involves investigation and evaluation of their own patient care, appraisal and assimilation of scientific evidence, and improvements in patient care 4. Interpersonal and communication skills that result in effective informa- tion exchange and teaming with patients, their families, and other health professionals 5. Professionalism, as manifested through a commitment to carrying out profes- sional responsibilities, adherence to ethical principles, and sensitivity to a diverse patient population 6. Systems-based practice, as manifested by actions that demonstrate an aware- ness of and responsiveness to the larger context and system of health care and the ability to effectively call on system resources to provide care that is of optimal value [emphasis added] SOURCE: ACGME, 2007a. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT certification in internal medicine to complete 3 years of postgraduate train- ing and an additional 2-year fellowship for subspecialization in medical oncology (ABIM, 2006b). ABIM incorporated the six ACGME competen- cies into its resident evaluation forms, and ACGME asked all residency review committees (RRCs) to make reference to them in their program requirements (Goroll et al., 2004). Program requirements for the medical oncology subspecialty further state that fellows “must have formal instruc- tion, clinical experience, and must demonstrate competence in the preven- tion, evaluation and management of . . . rehabilitation and psychosocial aspects of clinical management of the cancer patient” (ACGME, 2005). However, very few questions on a typical certification examination in in- ternal medicine or medical oncology directly address psychosocial health services. ABIM estimates that on average, five questions per examination may cover psychosocial or mental health content, but emphasizes that “drawing conclusions about examinee performance in these areas” would be impossible because “scores would be unreliable for such a small number of questions.”11 Family Medicine Residency Training Program The American Board of Family Medicine (ABFM) also requires candidates for certification in fam- ily medicine to complete 3 years of postgraduate training (ABFM, 2006b). Program requirements for family medicine state that residents must be- come trained in meeting the psychosocial health needs of patients. Specifi- cally, residents must address the “total health care of the individual and family, taking into account social, behavioral, economic, cultural, and biologic dimensions” and become skilled in the “diagnosis and manage- ment of psychiatric disorders in children and adults, emotional aspects of non-psychiatric disorders, psychopharmacology . . . and counseling skills” (ACGME, 2006a:16,28). Pediatric Residency Training Program and Pediatric Hematology-Oncology Fellowship The American Board of Pediatrics (ABP) similarly requires candidates for certification in pediatrics to complete 3 years of postgraduate training; an additional 3-year fellowship is required for subspecialization in pediatric hematology-oncology (ABP, 2006a). Program requirements in general pediatrics state, in part, that (ACGME, 2006b) • Residents should “be able to interview patients/families . . . with specific attention to behavioral, psychosocial, environmental, and family unit correlates of disease” (p. 11). 11 Personal communication, P. Poniatowski, ABIM, October 12, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� • The comprehensive experience for all residents should in- clude . . . acute psychiatric, behavioral, and psychosocial problems (p. 19). • Residents should demonstrate knowledge and skill in management of psychosocial problems that affect children with complex chronic disorders and their families (p. 23). • Residents should be able to serve as a member of a multidisci- plinary team “since no one individual has all the needed expertise to attend to the medical, psychological, and social needs of pa- tients” (p. 42). Approximately 3 percent of questions on the general pediatrics certifying examination pertain to psychosocial issues and problems, such as family issues, chronic illness, and handicapping conditions (ABP, 2007). ABP em- phasizes that there are many other aspects of psychosocial health services that subspecialty trainees need to learn that cannot be tested in a multiple- choice examination, but could be learned through clinical training during residency.12 Psychiatry Residency Training Program Because psychiatric services are by definition psychosocial health services, the written and oral examina- tions given by the American Board of Psychiatry and Neurology (ABPN) can reasonably be expected to address psychosocial health services.13 For these clinicians, a greater issue is the extent to which psychiatrists are knowledgeable about and qualified to address the effects of acute or chronic illness on mental health. Accordingly, program requirements in psychiatry state that clinical education should give residents experience in “the diagno- sis and management of mental disorders in patients with multiple comorbid medical disorders” and “opportunities to apply psychosocial rehabilitation techniques and to evaluate and treat differing disorders in a chronically ill patient population” in a variety of clinical settings (ACGME, 2007b:15,16). However, such experiences may be inadequate to prepare psychiatrists to care for individuals with serious complex health conditions. As noted in Chapter 6, in 2003 ABMS approved a new subspecialty in psychosomatic medicine to address in particular the care of the “complex medically ill” (Lyketsos et al., 2001:5). 12 Personal communication, James Stockman, MD, ABP, October 9, 2006, and Jean Robillard, MD, ABP Sub-Board of Pediatric Hematology-Oncology, October 12, 2006. 13 Although this may not ensure that psychiatrists have competency in all aspects of psy- chosocial health services such as communication skills, assessment of social issues affecting the patient, competency working with an interdisciplinary team, or implementation of the psychosocial plan. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT Continuing Education and Ongoing Certification of Competency U.S. jurisdictions (states, territories, and the District of Columbia) granting licenses to physicians require renewal of those licenses every 1, 2, or 3 years. Virtually all require completion and reporting of a specified number of hours of continuing medical education (CME) (12–50 hours per year) as part of license renewal. Some areas have also imposed content requirements (e.g., in geriatric medicine or palliative care) (AMA, 2006). Traditionally, CME has taken place through a lectures-at-a-conference format; however, this method has consistently been found ineffective as a means of changing clinical practice (Bero et al., 1998; Davis et al., 1999; Parochka and Paprockas, 2001). As a result, CME is being reconceptualized as “a more continuous process with more emphasis on self-assessment and continuous improvement and less on attending traditional lecture courses” (Goroll et al., 2004:908). In addition, physicians with certification in a specialty are required to be recertified periodically. Similar to the changing conceptualization of CME, the specialty recertification process for physicians has evolved from peri- odic testing to a more continuous “maintenance of certification” (MOC) process (ABMS, 2006). Developed by ABMS and its Member Boards, the MOC process involves the assessment and improvement of practice per- formance by physicians in every specialty (Batmangelich and Adamowski, 2004; Miller, 2006). Each Member Board will be required to develop spe- cific mechanisms for assessing evidence of diplomates’ competency in spe- cific areas (Pugh, 2003), as shown through ABIM’s Practice Improvement Module (PIM), ABFM’s Maintenance of Certification Program for Family Physicians (MC-FP) (ABFM, 2006a), ABP’s Program for Maintenance of Certification in General Pediatrics (PMCP-G®) and in Pediatric Subspecial- ties (PMCP-S®) (ABP, 2006a), and ABPN’s MOC program (ABPN, 2006a). Within such programs, topics related to psychosocial health services could be incorporated in such mechanisms as self-assessment modules, used to evaluate knowledge, and performance-in-practice modules, used for peer review. Registered Nurses There are three major educational paths to becoming a registered nurse (RN): obtaining a 2-year associate’s degree in nursing from a community or junior college, a 3-year hospital-based diploma, or a 4-year baccalaure- ate degree in nursing from a college or university (IOM, 2004b). All state boards of nursing except those of North Dakota and New York accept these three educational paths as appropriate academic preparation for RN licensure (Kovner and Knickman, 2005). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� Associate and Baccalaureate Nursing Education Two different organizations accredit nursing education programs. The National League for Nursing Accrediting Commission (NLNAC) accredits practical nursing, diploma, associate’s, baccalaureate, master’s, and doc- toral programs and schools. The Commission on Collegiate Nursing Educa- tion (CCNE), an autonomous arm of the American Association of Colleges of Nursing (AACN), also accredits programs offering baccalaureate and master’s degrees in nursing. NLNAC does not require nursing educational institutions to teach spe- cific knowledge or skills to achieve accreditation. Rather, each institution is to identify the knowledge and skills to be acquired by students through its curriculum at each level of education it provides. NLNAC then verifies that the school is meeting the educational objectives it has set for itself. NLNAC does require, however, that each school’s curriculum meet specific standards; for example, Curiculum developed by nursing faculty flows from the nursing education unit philosophy/mission through an organizing framework into a logical progression of course outcomes and learning objectives to achieve desired program objectives/outcomes. Program design provides opportunity for students to achieve program ob- jectives and acquire skills, values, and competencies necessary for nursing practice. (NLNAC, 2006:15) Although not requiring that specific knowledge and skills be taught, NLNAC does require accredited schools to build their curricula around guidelines for nursing practice selected from among those established by a number of recognized nursing organizations. For example, NLNAC supports the Pew Health Professions Commission’s 21 Competencies for the Twenty-First Century as the basis for preparing practitioners to meet evolving health care needs,14 and recommends as guidance a set of core competencies, a number of which address psychosocial health services (see Box 7-4). With respect to all of the core competencies it identifies, NLNAC states: “It is essential that each nursing program interpret these skills and competencies in the content, context, function, and structure of their pro- gram” (NLNAC, 2006:84). AACN identifies nurses as “practice[ing] from a holistic base and incorporate[ing] bio-psycho-social and spiritual aspects of health” (AACN, 14 NLNAC also recognizes other statements, including but not limited to the competencies published in Health Professions Education: A Bridge to Quality (IOM, 2003), the National Task Force on Quality Nurse Practitioner Education’s Criteria for E�aluation of Nurse Prac- titioner Programs (2002), and the National Association of Clinical Nurse Specialists’ 2004 Statement on Clinical Nurse Specialist Practice and Education. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html 2�� CANCER CARE FOR THE WHOLE PATIENT BOX 7-4 Selected NLNAC Core Competencies Addressing Psychosocial Health Services Nurses should • care for community’s health and have broad understanding of determi- nants of health (i.e., environment, socioeconomic conditions, behavior, genetics) • incorporate the psychosocial-behavioral perspective into a full range of clinical practice competencies • emphasize primary and secondary preventive strategies (i.e., occupational health, wellness centers, self-care programs, and health education and health promotion programs) • involve patients and families in the decision-making processes • help individuals, families, and communities maintain and promote healthy behavior • provide counseling for patients in situations where ethical issues arise SOURCE: NLNAC, 2006. 1998:5). Accordingly, topics related to psychosocial health services are to be woven in throughout the nursing curriculum.15 More specifically, bacca- laureate curricula are required to incorporates knowledge and skills identi- fied in The Essentials of Baccalaureate Education for Professional Nursing Practice (AACN, 1998), which includes core competencies pertaining to psychosocial health services (examples are presented in Box 7-5). CCNE’s accreditation standards require that baccalaureate curricula incorporate knowledge and skills identified in The Essentials of Baccalaure- ate Education for Professional Nursing Practice and (for master’s curricula) knowledge and skills identified in The Essentials of Master’s Education for Ad�anced Practice Nursing (CCNE, 2003). Licensure Graduates who have completed any of the above three educational paths must pass the National Council Licensure Examination for RNs (NCLEX-RN), administered by the National Council of State Boards of Nursing (NCSBN), to become licensed as an RN. Approximately 6–12 percent of questions on the NCLEX-RN are devoted to “psychosocial 15 Personal communication, Joan Stanley, AACN, November 9, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE 2�� BOX 7-5 Selected Core Competencies from The Essentials of Baccalaureate Education Graduates must have the knowledge and skills to • adapt communication methods to patients with special needs, e.g., sensory or psychological disabilities • provide relevant and sensitive health education information and counseling to patients • perform a holistic assessment of the individual across the lifespan, includ- ing a health history that includes spiritual, social, cultural, and psychologi- cal assessment, as well as a comprehensive exam • assess physical, cognitive, and social functional ability of the individual in all developmental stages, with particular attention to changes due to aging • provide teaching, and emotional and physical support in preparation for therapeutic procedures • foster strategies for health promotion, risk reduction, and disease preven- tion across the life span • assess and manage physical and psychological symptoms related to dis- ease and treatment • anticipate, plan for, and manage physical, psychological, social, and spiri- tual needs of the patient and family/caregiver • demonstrate sensitivity to personal and cultural influences on the individu- al’s reactions to the illness experience and end of life • coordinate and manage care to meet the special needs of vulnerable populations, including the frail elderly, in order to maximize independence and quality of life • coordinate the health care of individuals across the lifespan utilizing prin- ciples and knowledge of interdisciplinary models of care delivery and case management • understand how human behavior is affected by culture, race, religion, gen- der, lifestyle, and age • provide holistic care that addresses the needs of diverse populations across the lifespan • understand the effects of health and social policies on persons from diverse backgrounds • recognize the need for and implement risk-reduction strategies to address social and public health issues, including societal and domestic violence, family abuse, sexual abuse, and substance abuse SOURCE: AACN, 1998. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �00 CANCER CARE FOR THE WHOLE PATIENT integrity” (which includes behavioral interventions, coping mechanisms, family dynamics, mental health concepts, psychopathology, religious and spiritual influences on health, and support systems). Another 13–19 percent relate to “management of care” (content includes continuity of care, refer- rals, and collaboration with interdisciplinary teams), and 6–12 percent to “health promotion and maintenance” (which includes self-care, lifestyle choices, principles of teaching and learning, health screening, health promo- tion programs, and disease prevention) (NCSBN, 2006a). However, recent revisions to the exam reduced the content on “psychosocial integrity” (Stuart, 2006), which suggests a decreased focus on psychosocial issues. The scope of practice of RNs is defined by the state in which the nurse practices. Currently, 20 states participate in a Nurse Licensure Compact Agreement, whereby a nurse with a license in his/her state of residency is allowed to practice in another, subject to each state’s practice law and regu- lation (NCSBN, 2006b).16 All states require nurses to renewal their license periodically, which sometimes requires continuing education. Specialty Certification and Continued Competency Nurses can obtain specialty certification from various organizations to focus their practice in a certain field. For example, the American Nurses Credentialing Center (ANCC), a subsidiary of the American Nurses Asso- ciation, certifies nursing specialties such as psychiatric nursing and mental health. The Oncology Nursing Certification Corporation (ONCC) also of- fers examinations in oncology nursing for care of both pediatric and adult patients, including exams for certification as an Oncology Certified Nurse (OCN), Certified Pediatric Oncology Nurse (CPON), Advanced Oncology Certified Nurse Practitioner (AOCNP), and Advanced Oncology Certified Clinical Nurse Specialist (AOCNS) (ONCC, 2006). Thirty-six percent of the content of the test for certification as an OCN addresses knowledge of “quality-of-life” issues, including (but not limited to) pain; fatigue; sleep disorders; coping (risk factors, prevention, and management); spiritual distress; financial concerns; emotional distress; social dysfunction; loss and grief; anxiety; altered body image; cultural issues; loss of personal control; depression; survivorship issues; sexuality (risk factors, prevention, and management); reproductive issues; supportive care; dying and death; local, state, and national resources; and rehabilitation. Eight percent of the content of the CPON certification examination addresses psychoso- cial issues, and an additional 8, 3, and 6 percent, respectively, addresses growth and development, health promotion, and end-of-life care. Fifteen 16 Colorado, Kentucky, and New Jersey have enacted but not yet implemented the compact agreement (National Council of State Boards of Nursing, 2006). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �01 percent of the AOCNP examination addresses “psychosocial management,” including risk factors for psychosocial disturbances (e.g., comorbidities, specific treatments, lack of social support); assessment techniques; sexu- ality; pharmacological interventions (e.g., anxiolytics, antidepressants); nonpharmacological interventions (e.g., relaxation techniques, hypnosis, biofeedback, art/music therapy); coping methods; family dynamics; and diversity (e.g., cultural, lifestyle, and religious factors). Sixteen percent of the AOCNS examination similarly addresses psychosocial management (ONCC, 2007a,b,c,d). Evidence of continued competency is not yet uniformly required of licensed nurses. The most recent (2004–2006) data collected by NCSBN show that 13 states have no requirements for demonstration of “continued competence” for licensed nurses. The 31 states that do report using a vari- ety of mechanisms for ensuring continued competency require peer review (4), continuing education (25), periodic refresher courses (5), minimal practice (11), assessment of continued competence (4), and other mecha- nisms (6). Twelve states require specific subject matter—such as AIDS, child abuse, domestic violence, end of life, law and rules, pain management, and pharmacology—to be addressed through continuing education (NCSBN, undated). Social Workers The practice of social work includes “helping people obtain tangible ser- vices; counseling and psychotherapy with individuals, families, and groups; helping communities or groups provide or improve social and health ser- vices . . . [and] requires knowledge of human development and behavior; of social and economic, and cultural institutions; and of the interaction of all these factors” (NASW, 2007b:1). Although social workers can practice with a bachelor’s, master’s, or doctoral degree, the master of social work (MSW) is the most common academic requirement for licensure. Obtaining an MSW degree usually requires 2 years of postundergraduate study and field place- ments/practica (Morris et al., 2004). Educational preparation for the different degrees varies in conceptualization and design, content, program objectives, and expected knowledge and skills (CSWE, 2004). Baccalaureate and Master’s Degrees in Social Work Baccalaureate programs in social work prepare graduates for generalist professional practice; master’s programs in social work prepare graduates for advanced professional practice in an area of concentration. The Council on Social Work Education (CSWE) accredits both degree programs in the United States (CSWE, 2004). Since social work is the primary profession Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �02 CANCER CARE FOR THE WHOLE PATIENT for the delivery of social services, its accreditation standards, like those for the discipline of psychiatry, can be assumed to be psychosocial in their orientation. Less certain is the extent to which these accreditation standards facilitate the preparation of social workers in the knowledge, skills, and abilities required to address psychosocial needs when dealing with individu- als with complex medical conditions such as cancer. CSWE’s accreditation standards do not evidence substantial attention to psychosocial needs in the presence of illness. For example, a previous IOM report (IOM, 2006) documented that most schools of social work fail to provide students with basic knowledge of alcohol- and drug-use issues, and that a significant factor contributing to this situation is that accreditation standards do not mandate that curricula contain substance-use content (Straussner and Senreich, 2002). Licensure The Association of Social Work Boards (ASWB) develops and maintains four categories of social work licensure examinations—at the bachelor’s, master’s, advanced generalist, and clinical levels. Approximately 14 percent of questions on the bachelor’s-level exam are assigned to “human develop- ment and behavior in the environment,” with one of its six dimensions ad- dressing “impact of crises and changes.” Eleven percent of the master’s-level examination addresses “assessment, diagnosis, and intervention planning,” of which “biopsychosocial history and collateral data” is one of five dimen- sions (ASWB, 2006a). Specialization and Continuing Education Additionally, many social workers specialize in a particular area of practice, and a variety of organizations issue voluntary credentials and specialty certifications for those individuals who have a bachelor of social work (BSW) degree or an MSW. For example, the National Association of Social Workers (NASW) issues many specialty certifications, including the Certified Social Worker in Health Care (C-SWHC). Social workers who hold the C-SWHC have a current NASW membership; an MSW degree from an institution accredited by CSWE; 2 years and 3,000 hours of paid, supervised, post-MSW health care social work experience; an evaluation from an approved supervisor and a reference from an MSW colleague; and an Academy of Certified Social Workers (ACSW) or Diplomate in Clinical Social Work (DCSW) credential and/or a current state MSW-level license or a passing score on an ASWB MSW-level exam. They also must agree to adhere to the NASW Code of Ethics and the NASW Standards for Con- tinuing Professional Education, and are subject to the NASW adjudication process (NASW, 2007a). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �0� The Association of Oncology Social Work (AOSW) provides a defini- tion for oncology social workers’ scope of practice, has established volun- tary standards for practice, and serves as an educational resource. It defines oncology social work as providing “psychosocial services to patients, fami- lies, and significant others facing the impact of a potential or actual diag- nosis of cancer,” such as “stress and symptom management, care planning, case management, system navigation, education and advocacy” (AOSW, 2001:1). Similarly, the Association of Pediatric Oncology Social Work (APOSW) is a membership organization for individuals engaged in clinical social work in the field of pediatric oncology. It promotes knowledge and skill competency in part though its continuing education programs. The Board of Oncology Social Work Certification additionally offers Oncology Social Work Certification (OSW-C) to individuals who have graduated from a CSWE accredited program; have 3 years of post-master’s degree work in oncology social work or a related field, such as palliative or end-of-life care; hold licensure in good standing and membership in AOSW or APOSW; have three professional statements of support; can show evidence of involvement in extramural service, education, or research activities; and have agreed to uphold AOSW Standards of Practice and NASW Code of Ethics. Certifica- tion renewal requires evidence of continued relevant work, licensure, and fulfillment of continuing education requirements.17 The American Cancer Society (ACS) awards students in MSW programs advanced training grants to provide psychosocial services to people with cancer and their families (ACS, 2006). Finally, nearly every jurisdiction requires continuing education courses for renewal of social work licenses, although these requirements vary from one jurisdiction to another, for example, in the number of hours or types of courses required (ASWB, 2006b). Mental Health Providers Psychosocial health services also are offered by licensed mental health providers, such as psychologists and counselors, who address psychological health as the primary purpose of their intervention. Because, as with psy- chiatrists, their services are by definition “psychological,” their education and training can reasonably be expected to address psychosocial health care. For these practitioners, as for psychiatrists and social workers, the issue is how well prepared they are to serve those with acute or chronic health problems (especially when these problems can be life-threatening) and how well they are prepared to carry out key psychosocial interventions, such as assessing social issues affecting the patient, coordinating care, and working with an interdisciplinary team. 17 Personal communication, Ginny Vaitones, Board of Oncology Social Work Certification, August 21, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� CANCER CARE FOR THE WHOLE PATIENT Psychologists In 2004, the United States had 85,000 psychologists trained at the doctoral level, the standard educational path for practice as an independent clinical psychologist.18 To become a licensed clinical psychologist, graduates of doctoral programs also must complete supervised postdoctoral training (Olvey and Hogg, 2002). Clinically oriented graduate programs are organized and accredited in three categories: clinical psychologist preparation, counseling, and school psychologist preparation. Psychologists can remain generalists or develop an area of expertise within these broad categories. Most relevant to the provision of psychosocial health services to medically ill patients and their families is the specialty of clinical health psychology, discussed in more detail below. Other relevant specialties include neuropsychology, rehabilita- tion psychology, and pediatric psychology. Just over 5,000 members of the American Psychological Association (APA) list a medically related interest area.19 Clinical health psychology has been a major area of growth, and part of the psychology discipline’s organized effort to broaden its scope from a mental health to a health profession. It was formally recognized by APA as a specialty in the professional practice of psychology in 1997. There are 68 doctoral programs across clinical, counseling, and school psychology with an emphasis in health or medically related areas (APA, 2006b). There are 201 predoctoral internships with a major rotation in health psychology and 381 with a minor rotation, plus an additional 51 postdoctoral fellowships that incorporate training on this topic (http://www.appic.org/directory/). Accreditation Accreditation of educational programs for psychologists is managed by the APA’s Committee on Accreditation. The aim is to ensure that each program has “. . . clearly defined and appropriate objectives and maintains conditions under which their achievement can reasonably be expected. It encourages improvement through continuous self-study and review” (http://www.apa.org/ed/accreditation/). Accreditation is offered for doctoral programs, pre- and postdoctoral internships, and specialty post- doctoral internships. The latter are limited in number and include a focus on clinical child psychology (3), clinical health psychology (5), clinical neuropsychology (11), and rehabilitation psychology (1). (Doctoral ac- creditation encompasses master’s-level training, but accreditation is not 18 Individuals with a master’s degree in psychology also can practice under the direction of a doctoral-prepared psychologist, or independently as school psychologists or counselors (APA, 2003; Duffy et al., 2004). 19 Personal communication, Cynthia Belar, PhD, Executive Director for Education, American Psychological Association, October 18, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �0� available for terminal master’s programs.) The doctoral accreditation stan- dards require that students be “exposed to the current body of knowledge in . . . biological aspects of behavior . . .” (APA, 2005:12). However, there is no additional detail regarding this standard. Pre- and postdoctoral stan- dards contain no reference to this domain of knowledge. Licensure The Examination for Professional Practice in Psychology (EPPP) was developed and is updated by the Association of State and Provincial Psychology Boards (ASPPB). This standardized exam is used by every juris- diction in the United States and Canada except Puerto Rico and portions of Quebec. Many jurisdictions complement the EPPP with written and oral exams that assess clinical competence and knowledge of local mental health law. Licensing is generic for the practice of psychology and does not distinguish among clinical, counseling, and health psychologists. Only one state offers a license to practice in a specialty area of the discipline. ASPPB conducts a practice analysis every 6–10 years, including a sur- vey of practicing psychologists, in order to update the exam. From the ASPPB’s perspective, the objective of the national exam and the licensing process is to ensure a minimum level of competence and public safety. The objective is not to change or advance the field.20 Each EPPP comprises 225 multiple-choice questions (ASPPB, 2006), 11 percent of which focus on the content area “biological bases of be- havior.” Issues related to the impact of disability constitute just 1 of 26 areas covered under the content area “social and multicultural bases of behavior” (12 percent of the exam). Numerous other content areas have some potential relevance: “cognitive-affective bases of behavior” (13 per- cent); “growth and lifespan development” (13 percent); “assessment and diagnosis” (14 percent); and “treatment, intervention, and prevention” (15 percent). While a significant portion of the exam focuses on the bio- logical bases of behavior, experts in health psychology view this content as a necessary but largely insufficient knowledge base on the biopsychosocial interrelationships that must be understood in order to practice in a medi- cally related specialty. Certification The American Board of Professional Psychology (ABPP) certifies psychologists in 13 specialty areas, including clinical health psy- chology, clinical neuropsychology, and rehabilitation psychology. Board certification is not a requirement for practice in any jurisdiction or service organization, and it has not been pursued by the vast majority of psycholo- 20 Personal communication, Stephen DeMers, EdD, Executive Director, Associations of State and Provincial Psychology Boards, October 5, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� CANCER CARE FOR THE WHOLE PATIENT gists. Currently, there are only an estimated 3,000 board-certified psycholo- gists in the United States. Those seeking board certification in the area of clinical health psychol- ogy may specialize in any number of areas, including prevention, health promotion, public health, pain management, weight reduction, smoking cessation, and/or the psychological aspects of chronic illness. Board certi- fication requires a degree from an APA-approved graduate program, plus licensure and two years of postdoctoral training or supervised experience in clinical health psychology. The elements of the certification process include review of qualifications, review of a work sample, an oral exam focused on the work sample and ethics, and endorsement by colleagues. Board-certified experts review the candidate and make a determination regarding certifica- tion. There are no competency sets or explicit standards used as criteria. It has been difficult to interest health psychologists in applying for certification. Military psychologists constitute the one group that has promotion/salary incentives tied to certification. There are only an esti- mated 100 psychologists certified in this specialty.21 Graduate training Training in clinical health psychology during graduate study usually involves a number of additional required courses focused on this specialty, plus an advanced clinical placement working with medically ill individuals. This advanced placement follows basic training in core clini- cal skills. Graduate training in psychology at the doctoral level involves required and elective courses, complemented by supervised clinical experi- ence. Other than limited didactic content on the biological bases of behav- ior, general students in these programs are usually not exposed to didactic or substantive experiential training related to chronic medical illnesses and the psychosocial aspects of care for persons with these illnesses. Pre/postdoctoral internships A 1-year predoctoral internship is required for graduation from an APA-approved doctoral training program. Postdoc- toral internships are optional, but are often the vehicle selected by recent graduates to obtain specialty training and the supervised experience neces- sary to apply for licensure. To explore the nature of internship training related to cancer care, a request for information was circulated nationally by the Association of Psychology Postdoctoral and Internship Centers to its member programs. A total of 18 responses were received, most of which briefly summarized one program’s training activities. By and large, these internships appear to involve supervised clinical experience working with cancer patients and 21 Personal communication, Douglas Tynan, PhD, Chair, Board of Clinical Health Psychol- ogy, American Board of Professional Psychology, October 26, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �0� their families in hospital settings. Additional elements of the training may involve selected readings, while a few sites offer a related course. Though asked, respondents did not identify competency sets or model curricula related to this training. A noteworthy exemplar is Children’s Hospital of Philadelphia, with its Psychology Training Programs in Pediatric Oncology (http://www.chop. edu/hc_professionals/psych_edu.shtml). Pre- and postdoctoral training is offered, as well as supervised experiences for graduate students. These pro- grams provide opportunities for outpatient-, school-, and community-based work in addition to hospital-based training. Competencies and curricula Core curricular components in graduate-level clinical health psychology were first specified through a national consensus conference in 1983 (Stone, 1983). These core components centered on the social, biological, and psychological bases of health and disease; health policy, systems, and organizations; health assessment, consultation, and intervention; health research methods; ethical, legal, and professional is- sues; and interdisciplinary collaboration (Belar, 1990). In 1997, Belar and colleagues developed a model for self-assessment of knowledge and skills by health psychologists that drew from the content areas identified in the original consensus conference (Belar et al., 2001). The Society for Pediatric Psychology also recently published a set of recommendations for training in the subspecialty of clinical child psychology (Spirito et al., 2003), which articulate a dozen suggested “domains of training.” Conclusions The psychology profession has seen rapid growth, expanding the potential pool of mental health professionals who can respond to the psychosocial needs of cancer patients; clear growth has occurred as well in health-related specialties, including health psychology, neuropsychology, and rehabilitation psychology. However, accreditation standards for train- ing in psychology are very general and have limited direct applicability to psychosocial aspects of serious, complex medical illness. While accredita- tion standards are often referenced in the health care workforce literature as potential levers of change in efforts to influence curricula (IOM, 2003), it is difficult to envision how the current standards in this profession, given their general nature, could be modified to effect substantive change in training programs on the issues addressed in this report. Moreover, board certifica- tion does not play a major role in the field of psychology and therefore is an unlikely vehicle for effecting change. In comparison with accreditation standards, the content domains in the national licensing exam (EPPP) are relatively specific. While the biological bases of behavior are covered, it is possible to envision adding specificity in this area addressing the psychosocial aspects of illness and recovery. Doing Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� CANCER CARE FOR THE WHOLE PATIENT so might influence curricula design in graduate programs. However, it could conflict with the generalist nature of the exam and the aim of reflecting current rather than optimal practice. A training focus on cancer appears to occur principally through su- pervised experience in cancer care settings. Any call for additional core or basic training should probably focus on the psychosocial aspects of chronic illnesses generally rather than cancer in particular. The knowledge and skill gained through basic training in medical illness and its psychosocial effects could then be applied during additional supervised clinical experience with unique populations of chronically ill individuals, such as persons with can- cer. However, training activity in this profession, as in much of medicine, tends to be organized around hospital settings and funded through hospital- based activities. This situation serves as a barrier to the development and delivery of psychosocial services to medically ill patients in nonhospital community settings. A striking finding is that there appear to be no detailed competency sets or model curricula related to cancer care in use within this profession; there is merely a brief list of “core curricular areas” from a seminal 1983 health psychology conference. The development, dissemination, and adoption of competency sets and model curricula are potential high-yield interventions for advancing training in the psychosocial aspects of illness. In addition to the absence of clear competencies and curricula, other apparent barriers to improved education and training in this area include the absence of funding for training and a lack of qualified faculty. Counselors Requirements to become a licensed counselor include completing a master’s degree in counseling, passing a state-recognized exam, adher- ing to ethical codes and standards, and completing continuing education (BLS, 2006a). Professional educational programs in counseling voluntarily undergo review by an accrediting body, such as the Commission on Reha- bilitation Education (CORE), which accredits graduate programs in Reha- bilitation Counselor Education (RCE) (CORE, 2006), or the Commission on the Accreditation of Counseling and Related Educational Programs (CACREP), which accredits a variety of master’s degree programs, including family, community, gerontological, and mental health counseling (CACREP, 2006). Licensed counselors may become certified by the Commission of Rehabilitation Counselor Certification, which grants the credential Certi- fied Rehabilitation Counselor (CRC) (CCRC, 2006), or by the National Board for Certified Counselors (NBCC), which grants the general practice credential National Certified Counselor (NBCC, 2006). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �0� Pastoral Counselors A diagnosis of cancer or another serious illness can challenge a person’s spiritual as well as physical and psychological well-being. During illness and recovery, patients and their families may explore ways to address these dif- ficulties by seeking pastoral counselors—ministers who integrate religious resources with insights from the behavioral sciences—to assist them with coping. The American Association of Pastoral Counselors (AAPC) accred- its pastoral counselor training programs and credentials individuals in the discipline. To become a certified pastoral counselor, a candidate must pos- sess a bachelor’s, master’s, or doctoral degree in divinity; become ordained or recognized by identified faith groups; maintain an active relationship to a local religious community; complete a supervised self-reflective pastoral experience; spend 3 years in ministry; and complete an AAPC-approved Training Program in Pastoral Counseling. Pastoral counselors are then able to work with a state license (AAPC, 2005). EDUCATIONAL BARRIERS TO PSYCHOSOCIAL HEALTH CARE The above discussion indicates that there is likely inconsistency in the extent to which the educational curricula studied by predominantly medi- cally focused health care providers address psychosocial health care (and conversely the extent to which the curricula studied by predominantly psy- chosocial health care providers address the effects of illness on psychosocial functioning). Confounding the ability to understand and redress this incon- sistency are the limited information systems available to collect data on how educational standards are translated into hours or methods of instruction, the content of such instruction, or the resulting skills of the workforce. Therefore, it is not possible to know with any certainty the characteristics of the education these health care providers receive on psychosocial issues, or the actual competency in assessing and addressing psychosocial needs they develop as a result of their education. As discussed in Chapters 1 and 4, however, there is compelling evidence that the psychosocial needs of patients are not being adequately identified (Passik et al., 1998; McDonald et al., 1999; Fallowfield et al., 2001; Keller et al., 2004; President’s Cancer Panel, 2004; Maly et al., 2005; Merckaert et al., 2005; USA Today et al., 2006; IOM, 2007). Also as discussed pre- viously, a range of interrelated factors—including how work in clinical practices is designed and how incentives from payers and oversight organi- zations operate—can impede the health care workforce’s identification of psychosocial needs and delivery of psychosocial services. Yet limitations of the content and methods of professional education and training play a role as well. In addition to a possible underemphasis on psychosocial issues in Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �10 CANCER CARE FOR THE WHOLE PATIENT health professions education, education that does not prepare clinicians to practice in today’s work environments, a lack of faculty or knowledge by faculty about what needs to be taught, and ineffective approaches to educa- tion can adversely affect the development of needed competencies. Barriers to Education Gap Between Health Professions Education and the Current Practice En�ironment There are broad concerns about health professions education that go far beyond the lack of emphasis on biopsychosocial models of illness and recovery. Experts in education and health care delivery have concluded that clinical education has not kept pace with the shift in patient demographics and desires, changing expectations for the workforce within health systems, evolving practice requirements and staffing arrangements, the continuous flood of new information, the focus on quality improvement, and new technologies. Accordingly, they have called for the restructuring of health professions education to make it more relevant to twenty-first century health care (IOM, 2001, 2003). The IOM has recommended an intensive focus on five core competencies as the cornerstones of health professions education and improved workforce performance (IOM, 2003:4): • Patient-centered care—Identify, respect, and care about patient differences, values, preferences, and expressed needs; relieve pain and suffering; coordinate continuous care; listen to, clearly inform, communicate with, and educate patients; share decision making and management; and continuously advocate disease prevention, wellness, and promotion of healthy lifestyles, including a focus on population health. • Work in interdisciplinary teams—Cooperate, collaborate, commu- nicate, and integrate care in teams to ensure that care is continuous and reliable. • Employ evidence-based practice—Integrate best research with clin- ical expertise and patient values for optimum care, and participate in learning and research activities to the extent feasible. • Apply quality improvement—Identify errors and hazards in care; understand and implement basic safety design principles, such as standardization and simplification; continually understand and measure quality of care in terms of structure, process, and out- comes in relation to patient and community needs; and design and test interventions to change processes and systems of care, with the objective of improving quality. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �11 • Utilize informatics—Communicate, manage knowledge, mitigate error, and support decision making using information technology. The current weaknesses in health professions education in these five areas impede the delivery of psychosocial services to cancer patients in very concrete ways. Inattention to patient differences, values, preferences, and concerns contributes to psychosocial needs being undetected and unad- dressed. Difficulties in communicating hamper collaboration with patients and families and undermine shared decision making about strategies for meeting psychosocial needs. The absence of skills related to interdisciplin- ary, team-based care creates a barrier to establishing the linkages with other professionals that are essential in connecting patients and families to available psychosocial resources. A tendency to rely on clinical tradition rather than evidence leaves the workforce unaware of emerging evidence on the effectiveness of psychosocial services and unfamiliar with new practice guidelines that are drawn from that evidence. A lack of familiarity with informatics creates an aversion to innovative, computer-assisted methods for the critical tasks of screening and assessment of psychosocial needs. Inconsistent Use of Competencies to Guide Training In response to growing concerns about the abilities of health profes- sionals to keep up with the rapid pace of clinical developments and changes in health care systems, many health professions groups are undertaking initiatives to rethink the competencies their clinicians need to practice effectively. ACGME, for example, has launched a major, multiyear initia- tive to identify, better develop, and assess the competency of physicians in residency training (Swing, 2002). The Council identified six general competencies addressing patient care, medical knowledge, practice-based learning and improvement, interpersonal and communication skills, profes- sionalism, and systems-based practice (http://www.acgme.org/outcome/). ACGME required the committees that establish accreditation criteria for residencies in each specialty to incorporate these general competencies into their requirements. In a graduated fashion, residency programs are being required to define the specific knowledge, skills, and attitudes that make up each general competency; to redesign their programs to teach the com- petencies; and to formally assess the competency of their residents. There is emerging evidence that these requirements have had an impact on train- ing programs. For example, Weissman and colleagues (2006) found that psychiatric residency programs provide didactic and supervised clinical experience in evidence-based psychotherapies much more frequently than do graduate-level psychology or social work programs. In the latter two Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �12 CANCER CARE FOR THE WHOLE PATIENT fields, accreditation standards are less prescriptive regarding the teaching of evidence-based practices. This focus on competency identification is occurring broadly in other disciplines as well. Various mental health professions are developing compe- tency models in such disciplines as marriage and family therapy, psychology, advanced practice psychiatric nursing, and psychiatric rehabilitation. Cross- disciplinary competencies are being developed for practice with specific populations, such as children and adults with severe mental illness. Other initiatives have focused on competencies for special treatment approaches, such as recovery-oriented care, peer support, and culturally competent care (Hoge et al., 2005a). The inadequate delivery of psychosocial health care in oncology suggests that there also may be benefits to specifying the competencies necessary for providing psychosocial services to medically ill patients in general, and to cancer patients in particular. There are existing resources and some positive developments that could be used to advance the use of core competencies for the psychosocial care of cancer patients and their families. C-Change (http://www.c-changetogether. org), a coalition of federal and state government agencies, cancer centers, professional organizations, private businesses, nonprofit groups, and busi- ness leaders and individuals in the private sector whose missions relate to cancer research, control, and/or patient advocacy, has undertaken a major initiative to strengthen the core competencies of the cancer care workforce. The goal of this initiative is to develop and disseminate basic cancer care competencies to the general health care workforce—that not specializing in oncology. This focus on the nonspecialist workforce is deliberate, based on data showing an expanding need for oncology care that is not accompanied by as expansive a growth in the specialty oncology workforce. C-Change recognizes that the general health care workforce, as well as the specialty oncology workforce, needs to be competent in delivering cancer care (Smith and Lichtveld, 2007). C-Change has already defined a set of core workforce competencies, many of which address the psychosocial services and interventions recom- mended in the committee’s model and standard for care (see Box 7-6). C-Change plans to work with pilot sites to implement the competencies in 2007. Based on the results of this pilot test and evaluation, in 2008 C-Change plans to pursue national dissemination of the core competencies through academic, health care, and professional organizations, as well as through comprehensive cancer control coalitions. The core competencies and to-be-developed curriculum resources will be able to be integrated into (1) basic health professions education curricula used at academic institu- tions, (2) continuing education programs and licensing requirements of health professional societies, and (3) worksite training programs offered by employers of health professionals (Smith and Lichtveld, 2007). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �1� The set of five competencies recommended by the IOM (2003) and the set of six general competencies required by ACGME (Swing, 2002) also can contribute to the development of core psychosocial competencies, as does a model for self-assessment of knowledge and skills by health psychologists described by Belar and colleagues (2001). Similarly, Division 54 of the APA recommended 12 areas of training in pediatric psychology, which could easily be translated into competency domains (Spirito et al., 2003). The Memorial-Sloan Kettering Cancer Center has identified specific competen- cies for its Fellowship in Psycho-Oncology and Psychosomatic Medicine within each of the six ACGME categories and is sharing these competencies with similar programs around the country.22 For example, a core compe- tency for fellows in the “systems-based practice competency” involves the following: “Demonstrates a knowledge of community resources available to patients for continuing psychiatric care, care for family members, support and information and advocacy services for cancer patients/survivors, and hospice/palliative care resources” (Memorial-Sloan Kettering Cancer Center, 2007:4). As discussed earlier, the subspecialty of psychosomatic medicine also was recently approved as a subspecialty in psychiatry by ACGME, and the program requirements for this subspecialty indirectly identify essential competencies (http://www.acgme.org/acWebsite/RRC_400/400_prIndex. asp). The Academy of Psychosomatic Medicine has organized a committee that is charged with developing more specific competencies for this area of practice, which will serve as yet another resource.23 Finally, the model for providing psychosocial services to cancer sur- vivors and their families detailed in Chapter 4 should inform efforts to specify the competencies relevant to providing psychosocial services for all members of the workforce. It provides clear direction regarding the types of core competencies that should be considered essential in future efforts to develop comprehensive competency sets and related curricula. These include knowledge and skills in the following: • Communication with patients and families • Screening • Needs assessment • Care planning and coordination • Illness self-management • Collaboration across disciplines/specialties and work in teams 22 Personal communication, Andrew J. Roth, MD, Attending Psychiatrist, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, March 21, 2007. 23 Personal communication, William S. Breitbart, MD, Chief, Psychiatry Service, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, March 21, 2007. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� CANCER CARE FOR THE WHOLE PATIENT BOX 7-6 Selected C-Change Psychosocial Core Competencies DOMAIN I: CONTINUUM OF CARE. Within the context of the professional discipline and scope of practice, a health care professional should . . . Prevention and Behavioral Risks . . . Incorporate the shared decision-making process into cancer risk-reduction counseling. Treatment a. Access cancer treatment information specific to cancer location and type. b. Describe the available cancer treatment modalities. . . . d. Describe options to manage disease and treatment-related symptoms. e. Manage disease and treatment-related symptoms. f. Refer for treatment of disease and treatment-related symptoms. g. Provide emotional support to patients. h. Refer for mental health services. Post Treatment b. Assess that resources for cancer services and insurance coverage are consis- tent with current recommendation. c. Assist patients and families in navigating the health care system following cancer treatment. d. Guide patients with cancer and their families toward support systems and groups. e. Provide ongoing health services that meet age and gender recommendations. f. Recognize the importance of survivorship in a long-term cancer care plan at the conclusion of active treatment. g. Manage continuing and late effects of cancer and cancer treatment. j. Refer survivors to rehabilitation services. k. Provide support for cancer survivors and their families and caregivers as they cope with daily living, including lifestyle, employment, school, sexual relation- ships, fertility issues, and personal intimacy. Pain Management a. Explain how cancer pain differs from other types of pain. b. Describe the methods used to diagnosis cancer pain throughout the progression of the disease. c. Differentiate between acute and chronic pain symptoms. d. Describe the characteristics used to assess cancer pain: frequency, intensity, and site. e. Perform a cancer pain assessment. f. Explain the different treatment options for cancer pain. g. Perform a pain-related history taken during a physical examination. h. Manage cancer-related pain and analgesic side effects. DOMAIN III: COLLABORATION AND COMMUNICATION. A. Participate Within an Interdisciplinary Cancer Care Team 1. Define interdisciplinary care. 2. Describe the contribution of each professional perspective in the development of cancer care plan. 3. Consider the financial implications for recommended cancer care. 4. Refer patients to an oncology social worker for financial guidance and resource navigation. 5. Consider the resource challenges of the agency in implementing a treatment plan. B. Incorporate Psychosocial Communication Strategies in Conveying Cancer Information 1. Refer patients to mental health, psychosocial, and support services. 2. Recognize the signs and symptoms of cancer-related depression and anxiety. 3. Explain the management of depression and anxiety in patients with cancer. 4. Explain the useful copying [sic] mechanisms following a cancer diagnosis. C. Incorporate Cross-Cultural Communication Strategies in Conveying Cancer Information 1. Identify cultural subgroups in a given patient population. 2. Define culture-specific beliefs and practices. 3. Communicate cancer care information that is sensitive to religious and spiritual beliefs and practices. D. Describe Common Ethical and Legal Issues in Cancer Care 1. Adhere to HIPAA policies, procedures, and regulations. 2. Access institutional and other ethics resources. 3. Advocate for the use of advanced directives, including the right to refuse care. 4. Justify the need for informed consent in cancer research. SOURCE: Smith and Lichtveld, 2007. • Linking of patients to psychosocial services • Outcome assessment • Informatics (to support screening, needs assessment, planning, care coordination, service provision, and outcome assessment) Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �1� BOX 7-6 Selected C-Change Psychosocial Core Competencies DOMAIN I: CONTINUUM OF CARE. Within the context of the professional discipline and scope of practice, a health care professional should . . . Prevention and Behavioral Risks . . . Incorporate the shared decision-making process into cancer risk-reduction counseling. Treatment a. Access cancer treatment information specific to cancer location and type. b. Describe the available cancer treatment modalities. . . . d. Describe options to manage disease and treatment-related symptoms. e. Manage disease and treatment-related symptoms. f. Refer for treatment of disease and treatment-related symptoms. g. Provide emotional support to patients. h. Refer for mental health services. Post Treatment b. Assess that resources for cancer services and insurance coverage are consis- tent with current recommendation. c. Assist patients and families in navigating the health care system following cancer treatment. d. Guide patients with cancer and their families toward support systems and groups. e. Provide ongoing health services that meet age and gender recommendations. f. Recognize the importance of survivorship in a long-term cancer care plan at the conclusion of active treatment. g. Manage continuing and late effects of cancer and cancer treatment. j. Refer survivors to rehabilitation services. k. Provide support for cancer survivors and their families and caregivers as they cope with daily living, including lifestyle, employment, school, sexual relation- ships, fertility issues, and personal intimacy. Pain Management a. Explain how cancer pain differs from other types of pain. b. Describe the methods used to diagnosis cancer pain throughout the progression of the disease. c. Differentiate between acute and chronic pain symptoms. d. Describe the characteristics used to assess cancer pain: frequency, intensity, and site. e. Perform a cancer pain assessment. f. Explain the different treatment options for cancer pain. g. Perform a pain-related history taken during a physical examination. h. Manage cancer-related pain and analgesic side effects. DOMAIN III: COLLABORATION AND COMMUNICATION. A. Participate Within an Interdisciplinary Cancer Care Team 1. Define interdisciplinary care. 2. Describe the contribution of each professional perspective in the development of cancer care plan. 3. Consider the financial implications for recommended cancer care. 4. Refer patients to an oncology social worker for financial guidance and resource navigation. 5. Consider the resource challenges of the agency in implementing a treatment plan. B. Incorporate Psychosocial Communication Strategies in Conveying Cancer Information 1. Refer patients to mental health, psychosocial, and support services. 2. Recognize the signs and symptoms of cancer-related depression and anxiety. 3. Explain the management of depression and anxiety in patients with cancer. 4. Explain the useful copying [sic] mechanisms following a cancer diagnosis. C. Incorporate Cross-Cultural Communication Strategies in Conveying Cancer Information 1. Identify cultural subgroups in a given patient population. 2. Define culture-specific beliefs and practices. 3. Communicate cancer care information that is sensitive to religious and spiritual beliefs and practices. D. Describe Common Ethical and Legal Issues in Cancer Care 1. Adhere to HIPAA policies, procedures, and regulations. 2. Access institutional and other ethics resources. 3. Advocate for the use of advanced directives, including the right to refuse care. 4. Justify the need for informed consent in cancer research. SOURCE: Smith and Lichtveld, 2007. Elaboration is required for each of these content areas, specifying be- havioral descriptors for the underlying knowledge, skills, and attitudes re- quired for (1) different sectors of the workforce (e.g., paraprofessional case manager versus medical oncologist), (2) different stages of development (e.g., completion of training versus independent practice), and (3) different Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� CANCER CARE FOR THE WHOLE PATIENT levels of competence (exceptional, acceptable, substandard). Such sophisti- cation in competency identification and assessment is required to move the field beyond the common and limited practice of simply listing generic com- petencies with no specificity or behavioral anchors (Hoge et al., 2005b). Competency-based approaches offer a flexible foundation for staff de- velopment and assessment. Traditional approaches, in which qualifications or abilities are inferred from degrees, certification, licensure, discipline, or job description, lack specificity regarding skills and are of little utility when assessing skills that are shared by multiple segments of the workforce. Case management, for example, is a skill that can be performed by nondegreed paraprofessionals, such as navigators, or by highly trained professionals, such as master’s-prepared social workers or medical oncologists. Concep- tualizing case management as a function or competency, defined by clear behavioral descriptors and several levels of expertise, would provide for greater utility and flexibility in providing training in and assessing work- force capacities. Faculty Needs Identified educational competencies are necessary but insufficient for the development of student/trainee knowledge and skills. Sufficient num- bers of faculty who themselves possess the requisite attitudes, knowledge, and skills are required to teach the competencies. Faculty development programs are widely used to help train a critical mass of faculty in areas identified as deficient, such as education about substance use (Haack and Adger, 2002). Some professions, such as nursing, additionally suffer from an inadequate supply of faculty generally. Faculty development programs that attend to both numbers and expertise are needed to ensure the applica- tion of the competencies across health professions schools. Effecti�e Teaching Practices Competency identification and curriculum development provide a foun- dation for training and education. However, they must be combined with effective teaching practices to achieve the desired learning outcomes (Stuart et al., 2004). A substantial evidence base exists in medicine regarding ef- fective teaching and skill development approaches (Davis et al., 1999). The principal finding of research in this area is that didactic or noninteractive, single-session lectures and workshops constitute the most common train- ing approaches in continuing education and much of preservice education, but have virtually no effect in changing the practice behaviors of train- ees (Mazmanian and Davis, 2002; Bloom, 2005). Davis and colleagues (1999) argue that the evidence on this issue is so strong that continuing Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �1� education credit should probably not be offered for most continuing edu- cation events. Oxman and colleagues (1995) conclude there is no single magic bullet for achieving skill development and change in practice behaviors among learners. Combining multiple teaching strategies, each proven to have small effects on practice behavior, represents an evidenced-based approach to teaching. Such strategies include interactive or experiential methods; out- reach visits, sometimes referred to as academic detailing; reminders; audit- ing of practice behaviors with the provision of feedback to the learner; the use of opinion leaders; and patient-mediated interventions (Soumerai, 1998; Borgiel et al., 1999; Davis et al., 1999; O’Brien et al., 2003). Examples of some of these strategies are presented below. Combined, multiple teaching strategies The Communication Skills Teach- ing and Research (Comskil) Lab at Memorial Sloan-Kettering Cancer Cen- ter is currently training fellows from nonpsychiatric medical specialties in communication skills. To date, 39 fellows have been trained around six core modules: (1) Breaking Bad News, (2) Shared Decision Making About Treatment Options, (3) Responding to Patient Anger, (4) Discussing Prog- nosis, (5) Discussing the Transition from Curative to Palliative Care, and (6) Shared Decision Making About “Do Not Recussitate” Orders. The Comskil training program was developed using best practices that have been established for communication skills training. Before attending a module, participants receive a booklet summarizing the literature and skill recommendations. Each 2½- to 3-hour training module consists of a didactic presentation, exemplary video clips demonstrating skills, and a small-group role play session in which learners have the opportunity to practice with a trained actor playing the role of a patient. Immediate video playback of this role play encourages review, experimentation, and rein- forcement of new skills. Each session is cofacilitated by a medical/surgical and a psychosocial facilitator. Assessment and feedback are essential to the Comskil experience. Be- fore attending their first Comskil training module, participants are video recorded in their outpatient consultations with two patients, with the patient’s permission. These recordings are analyzed using a coding system based on the Comskil curriculum to assess participants’ baseline. Partici- pants receive feedback letters, based on this coding, that describe their cur- rent clinical communication strengths, as well as areas for improvement. Following training, participants are again video recorded in their consulta- tions with two patients. The recordings are analyzed, and feedback letters are sent to participants describing their strengths, improvements, and areas in need of continued improvement. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� CANCER CARE FOR THE WHOLE PATIENT Interactive, multicomponent education postlicensure The Individual Can- cer Assistance Network (ICAN) initiative of the National Association of Social Workers, CancerCare, the American Psychosocial Oncology Society (APOS), and Bristol-Meyers Squibb Foundation uses interactive strategies to train social workers and other mental health professionals to provide “cancer-sensitive” counseling to individuals with cancer. ICAN’s 8-hour face-to-face, interactive, experiential training program comprises discus- sion and knowledge- and skill-building activities encompassing clinicians’ monitoring of their own attitudinal and emotional responses to cancer; psy- chosocial issues relevant to cancer patients, including stress management, coping, quality-of-life concerns, grief, and hope; and ongoing case consulta- tion support. Skill-building activities address biopsychosocial assessment, counseling methods, relaxation techniques, collaborative care, and resource utilization. Evaluations of the ICAN program found that participants rated the program highly with respect to increasing their knowledge and mak- ing them better prepared to serve cancer patients (Blum et al., 2006). As of the end of 2006, more than 20,000 people from at least 68 countries had taken the online courses offered by APOS and NASW; 75 percent of these participants had taken and passed the continuing education credit exams; and more than 400 social workers had participated in the day-long in-person training sessions hosted by NASW state chapters. Most recently, the ICAN program implemented a train-the-trainer format, and 20 par- ticipants were trained to deliver the curriculum to at least 20 colleagues in their communities.24 Interdisciplinary, experiential, statewide education In response to a study revealing a high level of unmet psychosocial needs among cancer patients in the state, Pennsylvania’s Cancer Control Program commissioned the development of a statewide continuing education program for health pro- fessionals working with cancer patients (Barg et al., 1993). Priorities of the program were to (1) enhance provider knowledge about psychosocial services, as well as pain and symptom control; (2) develop and distribute consumer guides to community resources to increase the use of existing support services; and (3) increase effective provider communication with patients and their families. Responsibility for curriculum content, methods, and implementation was shared by the University of Pennsylvania, Univer- sity of Pittsburgh, Hershey Medical Center, and Lehigh Valley-Allentown Cooperative Cancer Center. The 3-day curriculum for health professionals was delivered at more than 20 sites across the state, and involved transmit- ting knowledge and using experiential educational strategies such as role 24 Personal communication, Patricia Doykos Duquette, PhD, Bristol-Myers Squibb Founda- tion, New York, December 14, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �1� playing, exercises in communication and problem solving, and analysis of ethical dilemmas. An interdisciplinary approach to care was modeled through the use of teams, comprising a nurse and social worker, to de- liver the continuing education program. The majority of participants were nurses, complemented by social workers, nutritionists, clergy, and pharma- cists. Evaluation revealed measurable changes in psychosocial assessments, interventions, and referrals taking place at attendees’ workplaces. Learning collaborative In conjunction with The Robert Wood Johnson Foundation, the American Association of Medical Colleges launched an Academic Chronic Care Collaborative to improve care of persons with chronic conditions who receive their care in academic health systems and to ensure that clinical education occurs in an exemplary clinical environment. Teams from 22 academic medical centers are participating in the initiative and have reported significantly enhanced clinical processes and outcomes for persons with diabetes, chronic obstructive pulmonary disease, and childhood asthma. In addition, their redesign of resident training produced new evidence-based approaches to trainees’ experiences and evaluation, as well as new insights into how to revitalize primary care in these settings (AAMC, 2006a). CONCLUSIONS AND RECOMMENDATION The committee concludes that the health care workforce’s attention to psychosocial needs may be inadequate for a number of reasons. As discussed in other chapters, practice environments may not be designed or organized to support efforts to identify and meet these needs. Policies of insurers and others also may create disincentives to attend to psycho- social health care. However, health professions education and training shape clinicians before they enter the workforce and are key determinants of clinicians’ attitudes, knowledge, and skills. Continuing education and maintenance-of-competency initiatives also help as new knowledge and care methods develop. Thus, professional education and training should not be ignored as a factor influencing the practices of health care providers. With respect to workforce training and development, the committee identifies the following factors as possible impediments to the provision of psychosocial health services: • lack of clarity about the competencies the workforce should opti- mally possess to provide the services; • the absence of well-developed curricula built around clearly defined competencies; Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �20 CANCER CARE FOR THE WHOLE PATIENT • inadequate numbers of faculty qualified to train and mentor stu- dents in psychosocial skills; and • insufficient specificity in accreditation and licensing standards re- garding competencies in and curricula on psychosocial care. Moreover, the lack of information systems to track developments in edu- cation and training hampers the identification of effective educational ap- proaches. Significant efforts are needed to ensure appropriate education and training of practitioners. Educational accrediting organizations, licensing bodies, and professional societies should examine their standards, licensing, and certification criteria with an eye to developing them as fully as possible in accordance with the standard of care set forth in this report. The com- mittee further makes the following recommendation. Recommendation: Workforce competencies. a. Educational accrediting organizations, licensing bodies, and pro- fessional societies should examine their standards and licensing and certification criteria with an eye to identifying competencies in delivering psychosocial health care and developing them as fully as possible in accordance with a model that integrates biomedical and psychosocial care. b. Congress and federal agencies should support and fund the estab- lishment of a Workforce Development Collaborative on Psycho- social Care during Chronic Medical Illness. This cross-specialty, multidisciplinary group should comprise educators, consumer and family advocates, and providers of psychosocial and biomedical health services and be charged with – identifying, refining, and broadly disseminating to health care ed- ucators information about workforce competencies, models, and preservice curricula relevant to providing psychosocial services to persons with chronic medical illnesses and their families; – adapting curricula for continuing education of the existing work- force using efficient workplace-based learning approaches; – drafting and implementing a plan for developing the skills of faculty and other trainers in teaching psychosocial health care using evidence-based teaching strategies; and – strengthening the emphasis on psychosocial health care in edu- cational accreditation standards and professional licensing and certification exams by recommending revisions to the relevant oversight organizations. c. Organizations providing research funding should support assess- ment of the implementation in education, training, and clinical Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html PREPARING THE WORKFORCE �21 practice of the workforce competencies necessary to provide psy- chosocial care and their impact on achieving the standard for such care. The committee proposes a sequence of three steps to foster both immediate and increasing attention to this workforce need. First, to catalyze the process, the National Institutes of Health (NIH) and other components of the Department of Health and Human Services (DHHS) should jointly convene a meeting of stakeholders in psychoso- cial health care to identify, summarize, and develop a distribution plan regarding currently available competencies, curricula, and model training approaches. This group should also develop the recommended member- ship and 2-year work plan for the proposed Workforce Development Collaborative. As a second step, DHHS should establish a full-time managerial posi- tion within its Health Resources and Services Administration (HRSA) with responsibility for improving the provision of psychosocial health services to individuals with chronic medical illnesses and their families. This individual should convene a multiagency federal working group to coordinate federal efforts on this agenda. At a minimum, the group should include represen- tatives from HRSA, the Office of Behavioral and Social Sciences Research (OBSSR) within NIH, the Centers for Medicare and Medicaid Services (CMS), the Agency for Healthcare Research and Quality (AHRQ), and the Substance Abuse and Mental Health Services Administration (SAMHSA). The third step in this process should involve appropriation or alloca- tion of federal funds to establish and support the operation of the Work- force Development Collaborative. Once convened, the Collaborative would pursue activities to further develop competencies and curricula, improve the skills of faculty, and influence the strengthening of accreditation standards. The Collaborative should give consideration to using small “challenge grants” to stimulate competency and curriculum development, following the model being used by the Picker Institute (http://www.pickerinstitute. org) to stimulate best practices in graduate medical education on patient- centered care. Congressional action and support for these recommended steps would be optimal, providing robust support for fully realizing the objectives iden- tified. However, action on these recommendations can and should be taken by the federal agencies even in the absence of congressional action. Moreover, action can be taken independently by educational leaders in the private sector as described in recommendation a above: a. Educational accrediting organizations, licensing bodies, and professional societies should examine their standards and licensing and certification Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �22 CANCER CARE FOR THE WHOLE PATIENT criteria with an eye to identifying competencies in deli�ering psychosocial health care and de�eloping them as fully as possible in accordance with a model that integrates biomedical and psychosocial care. 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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �2� 8 A Research Agenda CHAPTER SUMMARY In addition to taking the actions described in the pre�ious chapters, impro�ing the deli�ery of psychosocial health ser�ices will require targeted research. This research should aim to clarify the efficacy and effecti�eness of new and existing ser�ices, including identifying subpopulations who benefit from specific ser�ices and the circumstances in which gi�en ser�ices are most effecti�e. Health ser�ices research also is needed to identify more effecti�e and efficient ways of deli�ering these ser�ices to �arious popula- tions in different geographic locations and with �arying le�els of resources. As discussed in Chapter �, the economical production, interpretation, and application of research findings would be impro�ed by a taxonomy and nomenclature for psychosocial health ser�ices that would be shared across disciplines. A TAXONOMY AND NOMENCLATURE FOR PSYCHOSOCIAL HEALTH SERVICES The committee reiterates the importance of the recommendation made in Chapter 3 for the development of a standardized, transdisciplinary tax- onomy and nomenclature for psychosocial health services: Recommendation: Standardized nomenclature. To facilitate research on and quality measurement of psychosocial interventions, the Na- tional Institutes of Health (NIH) and the Agency for Healthcare Re- search and Quality (AHRQ) should create and lead an initiative to Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT develop a standardized, transdisciplinary taxonomy and nomenclature for psychosocial health services. This initiative should aim to incor- porate this taxonomy and nomenclature into such databases as the National Library of Medicine’s Medical Subject Headings (MeSH), PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE. As discussed in Chapter 3, the absence of a commonly understood vo- cabulary to describe psychosocial health services and interventions hinders the identification, interpretation, analysis, and application of evidence of effective delivery of those services. Developing a language that can be used across professions and disciplines is critical to the production of better evidence to support the delivery of effective psychosocial health services, which are themselves multidisciplinary and multiprofessional. EFFECTIVENESS AND HEALTH SERVICES RESEARCH Although evidence described in Chapters 3, 4, and 5 supports the health care benefits of providing psychosocial health services and points to ways of doing so effectively, there are still many unanswered questions. Key questions remain about how to address certain psychosocial health problems most effectively, as well as how to deliver services most efficiently to the various individuals who need them. Effectiveness Research As is the case in biomedical care, providing effective psychosocial ser- vices to all who need them is hindered in part by limitations of the knowl- edge base. For the past three decades, the National Cancer Institute (NCI) and other private organizations that fund cancer research have supported a wide range of psychosocial research studies involving cancer patients and their families. However, the challenge with cancer is that it is not a single disease (prostate cancer, for example, is different from lung cancer in its impact), and even for a particular cancer site, individuals’ specific psy- chosocial health care needs may vary (e.g., in early-stage versus advanced disease). Given that there are more than 100 specific cancer types, it is therefore difficult to generalize about the benefits of particular psychosocial interventions, as their efficacy may vary based on the cancer site or phase of disease. Increasingly, research studies have focused on homogeneous samples of patients, making interpretation of outcomes more salient. For these reasons, psychosocial research with cancer patients is more challeng- ing than that focused on more homogeneous diseases, such as asthma, diabetes, or heart disease. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA ��1 For some psychosocial problems, research has not yet identified effec- tive services to resolve them. In other cases, evidence that a remedy works effectively for some populations does not necessarily mean that the same remedy is effective for (is generalizable to) all people in all situations. More- over, evidence is frequently not as clear as one would like it to be. Findings can be mixed, with evidence of the effectiveness of a service being found in one study but not being replicated in others. Additionally, evidence that a given service is effective does not exclude the possibility that another service is more effective for the same problem or equally effective at lower cost. In such cases, research continues to be needed even for services and interventions whose efficacy is supported by research findings. All of these situations are found in the array of evidence pertaining to psychosocial health services. Identification of Effecti�e Inter�entions For some psychosocial health problems faced by cancer patients, re- search has not yet identified efficacious remedies. For example, as discussed in Chapter 3, research does not well inform clinicians about how to address effectively continued tobacco use among cancer patients, cognitive impair- ment among adults treated for cancer, and difficulties with school reentry for children treated for cancer. Further, although cancer is recognized as having a large impact on family members, they are rarely the subject of or included in research on psychosocial health care (Helgeson, 2005). More commonly, research points to the effectiveness of specific psychosocial services, but offers limited evidence about whether a broad spectrum of patients (and family members) benefit equally from those services in all situations. Determination of Effecti�eness in Different Populations and Scenarios Questions about the effectiveness of many psychosocial services have evolved from addressing whether given services are effective to addressing for whom and under what circumstances specific services are needed and effective (Helgeson et al., 2000; Zebrack and Zeltzer, 2003; Cohen, 2004; Helgeson, 2005; Stanton, 2005). Effectiveness research on psychosocial health services has most often focused on women with breast cancer at the middle to upper middle socioeconomic levels without regard to the amount of psychosocial stress they are experiencing. Services need to be tested with men, in patients with sites of cancer other than breast, across different stages of cancer, with patients experiencing different types and levels of psychosocial needs and stress, and with those from different cultural and socioeconomic backgrounds. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT Variables that moderate treatment effects need to be better under- stood as well (Helgeson, 2005). For example, many individuals diagnosed with cancer report manageable psychological distress that resolves over time without the need for formal services. Other research has found that patients with the highest levels of distress often show the greatest reduc- tion in symptoms when provided psychosocial services (Andrykowski and Manne, 2006; Antoni et al., 2006). Research conducted with individuals with varying availability of social supports has found that the effectiveness of different types of psychosocial services can depend on the nature and extent of those supports (Cohen, 2004). Because of such findings, experts point to the need for a new generation of research on the effectiveness of psychosocial health services (Helgeson, 2005) involving “increasingly care- ful a priori consideration of the nature of the samples, interventions, and outcomes involved, as well as theory-guided examinations of mechanisms for the obtained effects” (Stanton, 2005:4819). Particular attention should be paid to socially disadvantaged populations, examining the effects of so- cioeconomic status and race/ethnicity on the risk for psychosocial problems and on the impact of interventions on these problems. Such work should also take into account developmental issues, particularly for children with cancer, and the effectiveness of interventions at different life stages (Zebrack and Zeltzer, 2003). Use of More Robust Research Methods The strength and generalizability of the evidence generated by research are increased by attention to several research design issues. First, the ef- fectiveness of a service is often measured using dimensions of quality of life. Because measures of quality of life are numerous and variable, what one study finds effective may not be interpreted as such by others. The development of standard outcome measures by which the effectiveness of psychosocial services can be measured would increase the understanding and application of research results. Research using more rigorous research designs is also needed, includ- ing use of longer follow-up periods (Helgeson, 2005). For example, with respect to the effects of psychotropic medications used to treat depression and other mental health conditions of patients with cancer, conclusions about effectiveness are limited (see Chapter 3) because of the few random- ized controlled trials that have been done. More such trials are needed, using a larger patient cohort that is studied over a longer period of time to properly assess drug efficacy. These trials will likely require multicenter sites. The trials should be limited to patients with significant levels of de- pressive or anxious symptoms at baseline (e.g., severe adjustment disorder with depressive or anxious symptoms or anxiety, post-traumatic stress Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA �� disorder, or mood disorder) to ensure an adequate effect size. Studies also are needed that compare one drug with another and with the drug plus a psychosocial intervention. More multisite research on services targeting children is needed as well. Because cancer in children is rare, most research involves small samples, limiting the conclusions that can be drawn (Patenaude and Kupst, 2005). Research testing the effects of the receipt of psychosocial health services on physiological and clinical outcomes also could help build the conceptual framework underpinning those services, and point to new interventions and ways to target services and interventions to those who are most vulnerable (Patenaude and Kupst, 2005; Thacker et al., 2007). Such research should address, for example, the links between certain types of stress and immune system functioning and the effects of psychosocial supports on health, such as through changes in endocrine and immunological functioning and medi- ating physiological pathways. Health Services Research Health services research could help identify better ways of implement- ing some of the interventions necessary for the delivery of psychosocial health services. This research could be accomplished through the large- scale demonstration program recommended in Chapter 5 that would test various approaches to the effective provision of psychosocial health care in accordance with the standard of care set forth in this report. Health services research could also address how to implement components of the model described in Chapter 4 more efficiently and effectively, focusing in particular on methods for improving the patient–provider partnership, the development of better screening and needs assessment tools, comprehensive illness and wellness management interventions, approaches for effectively linking patients with services and coordinating care, and reimbursement arrangements that would support these interventions. Methods for Impro�ing the Patient–Pro�ider Partnership As discussed in Chapters 3 and 4, tools and approaches are needed to improve communication between patients and providers and to support pa- tient decision making in the face of a large volume of complex information. Research is needed to develop such tools and approaches for populations at greatest risk (e.g., older adults; those of lower socioeconomic status; and those with comorbid conditions, including psychosocial distress and decreased cognition). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT De�elopment of Better Tools for Screening The screening tools described in Chapter 4 all have somewhat differ- ent purposes. For example, the Distress Thermometer and its accompany- ing Problem List screen for generalized distress and identify emotional, spiritual, physical, family, and practical issues, such as problems with transportation, as sources of distress. PCM 2.0 focuses on role functioning and overall quality of life. Other types of psychosocial health needs not addressed by these instruments include, for example, social isolation/social support, difficulties in navigating the health system, and poor literacy. Health services research should focus on the development of psychosocial screening tools addressing a more comprehensive range of psychological and social stressors that can interfere with the ability of patients and fami- lies to manage cancer and its consequences. Also needed are psychosocial screening tools and approaches for their use that consider the comorbidities frequently experienced by cancer sur- vivors. Data from the 1998–2000 National Health Interview Survey, for example, show that 49 percent of cancer survivors are age 65 or older. Among cancer survivors aged 65 or older, 39 percent report having a di- agnosis of heart disease, angina, heart attack, heart condition, or stroke; 13 percent report currently being treated for diabetes (Hewitt et al., 2003). These findings are significant because efforts are under way to understand psychosocial barriers to patients’ self-management of these conditions and to apply psychosocial screening instruments developed for individuals with these conditions (Glasgow et al., 2001; Whittemore et al., 2005). The Problem Areas in Diabetes (PAID) instrument, for example, is a 20-item self-administered measure of diabetes-specific emotional distress that has performed well in psychometric testing. It has been found to correlate strongly with “a wide range of theoretically related constructs such as gen- eral emotional distress, depression, diabetes self-care behaviors, diabetes coping, and health beliefs” and to be a statistically significant predictor of glycemic control (Polonsky et al., 2006). The Diabetes Self-Management Assessment Tool is another example. The issue of comorbidity raises a number of questions. Hypothetically, should cancer patients be administered a separate psychosocial screening tool for each of their comorbid conditions? In addition to the burden that multiple screening instruments would likely impose on the patient, screen- ing for psychosocial distress in cancer survivors might not be clinically feasible outside of oncology practices if medical providers had to implement multiple screens to address each patient’s unique multiple illnesses. Other questions arise as well. If a clinician cares for an individual with more than one chronic condition, which screening tool or tools should be used? Is there a minimum set of domains that should be included in all screening Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA �� tools for psychosocial health needs? Is there an ideal set? Could a tool be developed that would address all these domains? Should existing tools be improved to achieve greater utility? Some of these questions would be addressed if there were a valid psy- chosocial screening instrument that could be used across multiple chronic conditions. One possibility would be to develop such an instrument along the lines of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) (http://www.nihpromis.org/default.asp). The goal of this initiative is to develop ways to measure patient-reported symptoms, such as pain and fatigue, and aspects of health-related quality of life across a wide variety of chronic diseases and conditions. The PROMIS initiative es- tablishes a collaborative relationship between NIH and individual research teams in order to • Develop and test a large repository of items and questionnaires measuring patient-reported outcomes. • Build a Web-based resource for administering computerized adap- tive tests, collecting self-report data, and reporting instant health assessments. • Evaluate the utility of PROMIS and promote widespread use of the instruments for clinical research and clinical care. • Sustain the repository and continued development of the PROMIS tools and system for clinical research and practice (NIH, undated). The network will collaborate on the collection of self-reported data from diverse populations of individuals with a variety of chronic diseases using agreed-upon methods, modes, and questionnaires. If a less sweeping initiative were desired with respect to screening instruments, research could address, for example, more testing of existing screening instruments, testing of the effectiveness of cancer-focused screen- ing instruments for other chronic conditions and vice versa, and ways to incorporate quality-of-life measures into screening instruments. Use of screening instruments in conjunction with comprehensive needs assessment also should be addressed. De�elopment of Better Needs Assessment Instruments Chapter 4 presents the results of a systematic appraisal (Wen and Gustafson, 2004) of needs assessment instruments for cancer that identifies 17 patient and 7 family instruments for which information is available on their reliability, validity, burden, and psychometric properties. Across these instruments, many problems are noted, including wide variation in the Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT needs addressed,1 inconsistency in domains within the instrument and in items included in similarly named domains, a lack of evidence of sensitivity to change over time, failure to examine reading levels, and failure to address the period after initial treatment for cancer. The authors express their doubt as to whether any one instrument could be developed to address all areas of interest, but recommend that a common set of domain terms be adopted to form the core of needs assessment and that agreement be reached on some items to be placed in the domains. Research also is recommended to address obstacles to the practice of needs assessment, to identify characteristics of effective performance of needs assessment, and to establish the relative im- portance and significance of identified needs. As with the questions posed above with respect to screening, questions about how best to conduct needs assessment in the presence of comorbidities also require attention. Comprehensi�e Illness and Wellness Management Inter�entions As described in Chapters 3 and 4, comprehensive illness self- management programs have been found to be effective in improving pa- tient knowledge, skills, and confidence in managing a number of chronic illnesses, such as diabetes, asthma, heart disease, lung disease, stroke, and arthritis. Some of these programs also have been found to be effective in improving health outcomes (Lorig et al., 2001; Bodenheimer et al., 2002; Lorig and Holman, 2003; Chodosh et al., 2005). Yet while particular inter- ventions have been developed and found to be effective in helping cancer patients manage individual symptoms, such as pain and fatigue, compre- hensive illness and health management programs similar to those that exist for individuals with other chronic illnesses have not been developed and tested in individuals living with the diagnosis and sequelae of cancer. Re- search to this end is needed. Approaches for Effecti�ely Linking Patients with Ser�ices and Coordinating Care Also as discussed in Chapter 4, the various mechanisms used to link patients with services delivered by different health and human service pro- viders (e.g., structured referral arrangements and formal agreements with external providers, case management, collocation and clinical integration of services, patient navigators, use of shared electronic health records) have 1 For example: physical, psychological, medical interactions, sexual, coping information, activities of daily living, interpersonal communication, availability and continuity of care, physician competence, support networks, spiritual, child care, family needs, pain/symptom control, home services, having purpose. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA �� varying levels of empirical support. This support does not come from stud- ies of the use of these mechanisms by oncology providers in ambulatory care settings. Because most oncology patients receive their cancer care in outpatient settings, research comparing the effectiveness and cost of using different mechanisms to link patients to psychosocial services and coordi- nate their care could help inform and redesign oncology practices. Such research also could evaluate the use of different types of personnel (e.g., nurses and social workers with varying levels of education and training and unlicensed, trained workers such as patient care navigators) to perform linkage and coordination activities. Reimbursement Arrangements That Promote Psychosocial Care As illustrated in Chapter 6, little information exists outside of Medicare about how group purchasers and health plans provide for psychosocial health care in their contracts with each other and with health care provid- ers. Although there are anecdotal reports of best practices by some health plans and providers, qualitative and quantitative research could better il- luminate the reimbursement and other mechanisms used by leading health care providers to address psychosocial health services and their effects on clinicians, work design, and patients and on the delivery of effective psychosocial health care. Such research could also address to what extent mechanisms have been developed for reimbursing for higher-than-average care coordination needs. Recommendation Consistent with the above discussion, the committee recommends the following research agenda. Recommendation: Research priorities. Organizations sponsoring re- search in oncology care should include the following areas among their funding priorities: • Further development of reliable, valid, and efficient tools and strategies for use by clinical practices to ensure that all patients with cancer receive care that meets the standard of psychosocial care. These tools and strategies should include – approaches for improving patient–provider communication and providing decision support to cancer patients; – screening instruments that can be used to identify individu- als with any of a comprehensive array of psychosocial health problems; Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT – needs assessment instruments to assist in planning psychoso- cial services; – illness and wellness management interventions; and – approaches for effectively linking patients with services and coordinating care. • Identification of more effective psychosocial services to treat mental health problems and to assist patients in adopting and maintaining healthy behaviors, such as smoking cessation, exer- cise, and dietary change. This effort should include – identifying populations for whom specific psychosocial ser- vices are most effective, and psychosocial services most effec- tive for specific populations; and – development of standard outcome measures for assessing the effectiveness of these services. • Creation and testing of reimbursement arrangements that will promote psychosocial care and reward its best performance. Research on the use of these tools, strategies, and services should also focus on how best to ensure delivery of appropriate psychosocial ser- vices to vulnerable populations, such as those with low literacy, older adults, the socially isolated, and members of cultural minorities. REPORT EVALUATION As part of this study, NIH requested that the Institute of Medicine make recommendations for how the impact of this report could be evalu- ated. The committee believes that evaluation activities could be useful in promoting action on all the recommendations made in this report and in designing future studies. Accordingly, the committee makes the following recommendation. Recommendation. Promoting uptake and monitoring progress. The National Cancer Institute/NIH should monitor progress toward im- proved delivery of psychosocial services in cancer care and report its findings on at least a biannual basis to oncology providers, consumer organizations, group purchasers and health plans, quality oversight organizations, and other stakeholders. These findings could be used to inform an evaluation of the impact of this report and each of its recommendations. Monitoring activities should make maximal use of existing data collection tools and activities. This recommendation could be implemented using a variety of approaches. For example, to determine the extent to which patients with cancer receive Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA �� psychosocial health care consistent with the standard of care and its imple- mentation as set forth in Chapters 4 and 5, respectively, the Department of Health and Human Services (DHHS) could • Conduct an annual, patient-level, process-of-care evaluation us- ing a national sample and validated, reliable instruments, such as the Consumer Assessment of Healthcare Providers and Systems (CAHPS) instruments. • Add measures of the quality of psychosocial health care for patients (and families as feasible) to existing surveys, such as the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveil- lance System (BRFSS). • Conduct annual practice surveys to determine compliance with the standard of care. • Monitor and document the emergence of performance reward ini- tiatives (e.g., content on psychosocial care in requests for proposals [RFPs] and pay-for-performance initiatives that specifically include incentives for psychosocial care). For the committee’s recommendation on patient and family education (see Chapter 5), NCI could • Routinely query patient education and advocacy organizations about their efforts to educate patients with cancer and their family caregivers that they should expect, and request when necessary, cancer care that meets the standard of care recommended in this report. • Assess whether patients and caregivers show greater knowledge of how oncology providers should address their psychosocial needs (the standard of care) and whether they report more receipt of psychosocial health services as part of their cancer care. Surveys could be used to gather this information and would indicate the extent to which cancer care is meeting the standard of care. • Use an annual patient-level, process-of-care evaluation (such as CAHPS) to identify patient education experiences. For the committee’s recommendation on dissemination and uptake of the standard of care (see Chapter 5), DHHS could determine whether NCI, the Centers for Medicare & Medicaid Services (CMS), and AHRQ had conducted demonstration projects and how they had disseminated the findings from those demonstrations. For the committee’s recommendation on support from payers (see Chapter 6), NCI and/or advocacy, provider, or other interest groups could Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT • Survey national organizations (e.g., America’s Health Insurance Plans, the National Business Group on Health) about their aware- ness of and/or advocacy activities related to the recommendations in this report and the initiation of appropriate reimbursement strategies/activities. • Monitor and document the emergence of performance reward initiatives (e.g., RFP content on psychosocial care, pay-for- performance that specifically includes incentives for psychosocial care). • Evaluate health plan contracts and state insurance policies for cov- erage, copayments, and carve-outs for psychosocial services. • Assess coverage for psychosocial services for Medicare beneficiaries. For the committee’s recommendation on quality oversight (see Chap- ter 6), DHHS could • Examine the funding portfolios of NIH, CMS, AHRQ, and other public and private sponsors of quality-of-care research to evaluate the funding of quality measurement for psychosocial health care as part of cancer care. • Query organizations that set standards for cancer care (e.g., Na- tional Comprehensive Cancer Network, American Society of Clin- ical Oncology, American College of Surgeons’ Commission on Cancer, Oncology Nursing Society, American Psychosocial Oncol- ogy Society) and other standards-setting organizations (e.g., Na- tional Quality Forum, National Committee for Quality Assurance, URAC, the Joint Commission) to determine the extent to which they have – created oversight mechanisms used to measure and report on the quality of ambulatory cancer care (including psychosocial health care); – incorporated requirements for identifying and responding to psychosocial health care needs into their protocols, policies, and standards in accordance with the standard of care put forth in this report; and – used performance measures of psychosocial health care in their quality oversight activities. For the committee’s recommendation on workforce competencies (see Chapter 7), DHHS could • Monitor and report on actions taken by Congress and federal agencies to support and fund the establishment of a Workforce Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html A RESEARCH AGENDA ��1 Development Collaborative on Psychosocial Care during Chronic Medical Illness. • Review board exams for oncologists and primary care providers to identify questions relevant to psychosocial care. • Review accreditation standards for educational programs used to train health care personnel to identify content requirements rel- evant to psychosocial care. • Review certification requirements for clinicians to identify those requirements relevant to psychosocial care. • Examine the funding portfolios of NIH, CMS, AHRQ, and other public and private sponsors of quality-of-care research to quantify the funding of initiatives aimed at assessing the incorporation of workforce competencies into education, training, and clinical prac- tice and their impact on achieving the standard for psychosocial care. For the committee’s recommendation on standardized nomenclature and research priorities (see Chapter 3 and this chapter, respectively), DHHS could • Report on NIH/AHRQ actions to develop a taxonomy and nomen- clature for psychosocial health services. • Examine the funding portfolios of public and private research sponsors to assess whether funding priorities included the recom- mended areas. REFERENCES Andrykowski, M. A., and S. L. Manne. 2006. Are psychological interventions effective and accepted by cancer patients? I. Standards and levels of evidence. Annals of Beha�ioral Medicine 32(2):93–97. Antoni, M. H., S. K. Lutgendorf, S. W. Cole, F. S. Dhabhar, S. E. Sephton, P. G. McDonald, M. Stefanek, and A. K. Sood. 2006. The influence of bio-behavioral factors on tumor biology: Pathways and mechanisms. Nature Re�iews. Cancer 6(3):240–248. Bodenheimer, T., K. Lorig, H. Holman, and K. Grumbach. 2002. Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288(19): 2469–2475. Chodosh, J., S. C. Morton, W. Mojica, M. Maglione, M. J. Suttorp, L. Hilton, S. Rhodes, and P. Shekelle. 2005. Meta-analysis: Chronic disease self-management programs for older adults. Annals of Internal Medicine 143(6):427–438. Cohen, S. 2004. Social relationships and health. American Psychologist 59(8):676–684. Glasgow, R. E., D. J. Toobert, and C. D. Gillette. 2001. Psychosocial barriers to diabetes self- management and quality of life. Diabetes Spectrum 14(1):33–41. Helgeson, V. S. 2005. Recent advances in psychosocial oncology. Journal of Consulting and Clinical Psychology 73(2):268–271. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT Helgeson, V. S., S. Cohen, R. Schultz, and J. Yasko. 2000. Group support interventions for women with breast cancer: Who benefits from what? Health Psychology 19(2): 107–114. Hewitt, M., J. H. Rowland, and R. Yancik. 2003. Cancer survivors in the United States: Age, health, and disability. Journal of Gerontology 58(1):82–91. Lorig, K. R., and H. Holman. 2003. Self-management education: History, definition, out- comes, and mechanisms. Annals of Beha�ioral Medicine 26(1):1–7. Lorig, K. R., P. Ritter, A. L. Stewart, D. S. Sobel, B. W. Brown, A. Bandura, V. M. Gonzalez, D. D. Laurent, and H. R. Holman. 2001. Chronic disease self-management pro- gram: 2-year health status and health care utilization outcomes. Medical Care 39(11): 1217–1223. NIH (National Institutes of Health). undated. Primary goals of PROMIS. http://www. nihpromis.org/Web%20Pages/Goals.aspx?PageView=Shared (accessed September 12, 2007). Patenaude, A. F., and M. J. Kupst. 2005. Psychosocial functioning in pediatric cancer. Journal of Pediatric Psychology 30(1):9–27. Polonsky, W. H., B. J. Anderson, P. A. Lohrer, G. Welch, A. M. Jacobson, J. E. Aponte, and C. E. Schwartz. 2006. RCMAR measurement tools: Problem areas in diabetes (PAID). Resource Centers for Minority Aging Research (RCMAR). http://www.musc.edu/dfm/ RCMAR/PAID.html (accessed January 9, 2007). Stanton, A. L. 2005. How and for whom? Asking questions about the utility of psychoso- cial interventions for individuals diagnosed with cancer. Journal of Clinical Oncology 23(22):4818–4820. Thacker, P. H., S. K. Lutgendorf, and A. K. Sood. 2007. The neuroendocrine impact of chronic stress on cancer. Cell Cycle 6(4):430–433. Wen, K.-Y., and D. H. Gustafson. 2004. Needs assessment for cancer patients and their fami- lies. Health and Quality of Life Outcomes 2:11. Whittemore, R., G. D. E. Melkus, and M. Grey. 2005. Metabolic control, self-management and psychosocial adjustment in women with type 2 diabetes. Journal of Clinical Nursing 14(2):195–203. Zebrack, B., and L. Zeltzer. 2003. Quality of life issues and cancer survivorship. Current Problems in Cancer 27(4):198–211. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� Appendix A Committee Member Biographies Nancy E. Adler, PhD, is professor of psychology, Departments of Psychiatry and Pediatrics, University of California, San Francisco (UCSF), where she is also vice-chair of the Department of Psychiatry, and director of the Center for Health and Community. She received a BA from Wellesley College and a PhD in psychology from Harvard University. After serving as assistant and associate professor at the University of California, Santa Cruz, she went to UCSF to initiate a graduate program in health psychology. She has served as director of that program, a National Institute of Mental Health (NIMH)-sponsored postdoctoral program in Psychology and Medicine: An Integrative Research Approach, and a new postdoctoral Health and Society Scholars Program funded by The Robert Wood Johnson Founda- tion. Dr. Adler is a fellow of the American Psychological Society and the American Psychological Association (APA). She has served as president of the APA’s Division of Population and Environmental Psychology and received its Superior Service Award. She is a member of the Society for Experimental Social Psychology, the Academy of Behavioral Medicine Re- search, and the Society for Behavioral Medicine. She has been awarded the UCSF Chancellor’s Award for Advancement of Women; the George Sarlo Prize for Excellence in Teaching; and the Outstanding Contribution to Health Psychology Award from the APA’s Division of Health Psychol- ogy. She is a member of the Institute of Medicine (IOM) and was named a national associate of the National Academies. She also serves on the Advisory Committee to the Director of the National Institutes of Health (NIH). Dr. Adler’s earlier research examined the utility of decision models for understanding health behaviors, with a particular focus on reproductive Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT health. Her current work examines the pathways from socioeconomic sta- tus to health. As director of the MacArthur Foundation Research Network on Socioeconomic Status and Health, she coordinates research spanning social, psychological, and biological mechanisms by which socioeconomic status influences health. Within the network she has focused on the role of subjective social status in health. Rhonda J. Robinson-Beale, MD, is chief medical officer, Clinical Program Effectiveness and Quality, for United Behavioral Health (UBH). In this po- sition, she manages a staff of clinicians and professionals solely dedicated to quality, clinical program design and implementation, learning and con- sultation, and behavioral health informatics. She is an experienced behav- ioral health practitioner with more than 20 years of experience in diverse treatment and research settings who recognizes the value of integrating behavioral, medical, pharmacy, and disability programs to treat the needs of the whole patient. Dr. Robinson-Beale joined the legacy UBH company PacifiCare Behavioral Health in October 2005 as chief medical officer. She assumed her new duties as chief medical officer of UBH during the compa- nies’ brief integration period. Her extensive background includes lead clini- cal positions at national behavioral and health organizations such as Cigna Behavioral Health, Blue Cross Blue Shield of Michigan, and Health Alliance Plan. During her tenure at Cigna, she was responsible for the organization’s clinical direction, particularly in the area of clinical integration across pharmacy, behavioral, and medical programs. During the past 10 years, Dr. Robinson-Beale has authored more than 17 papers that have informed audiences about behavioral health integration, selected quality initiatives, diagnosis and management of behavioral health conditions in the primary care setting, disease management models, substance abuse and pregnancy, dual diagnosis, and management of psychiatric care for HIV patients. She is a graduate of Wayne State University School of Medicine in Detroit and the University of Michigan, Ann Arbor. Diane S. Blum, MSW, is executive director of CancerCare, Inc., a national nonprofit organization that provides free professional support services, including counseling, education, financial assistance, and practical help, to people with cancer and their loved ones. Prior to joining CancerCare as director of social service, Ms. Blum served as a social work supervisor at the Memorial Sloan-Kettering Cancer Center and the Dana Farber Cancer Insti- tute. Co-founder of the National Alliance of Breast Cancer Organizations, she is a founder of National Breast Cancer Awareness Month and serves as editor-in-chief of People Li�ing with Cancer, the American Society of Clini- cal Oncology’s (ASCO) website for patients and the public. Additionally, she serves on committees of the IOM, ASCO, and the National Association of Social Work and is a member of the editorial boards of five oncology- Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX A �� related publications. Ms. Blum’s awards include the Lifetime Achievement Award from the Board of Sponsors of National Breast Cancer Awareness Month, the Special Recognition Award from the National Coalition for Cancer Survivorship, the Republic Bank Breast Cancer Research Founda- tion Award, and the Special Recognition Award of the American Society of Clinical Oncology. Ms. Blum has written and lectured extensively on the psychosocial needs of cancer patients and their families. Her research has been published in a variety of medical journals, including the American Journal of Hospice and Palliati�e Care, the Journal of Psychosocial On- cology, the Journal of Pain and Symptom Management, and the Annals of Internal Medicine. She received a bachelor’s degree from the University of Rochester and a master’s degree from the School of Social Welfare at the State University of New York, Buffalo. Patricia A. Ganz, MD, a medical oncologist, received her BA magna cum laude from Radcliffe College (Harvard University) in 1969 and her MD from the University of California, Los Angeles (UCLA) in 1973. She sub- sequently completed her training in internal medicine and hematology- oncology at UCLA Medical Center, where she also served as chief resident in medicine. She has been a member of the faculty of the UCLA School of Medicine since 1978 and the UCLA School of Public Health since 1992. Since 1993 she has been director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center. In 1999 she was awarded an American Cancer Society Clinical Research Professorship for “enhancing patient outcomes across the cancer control continuum.” In 2006 she was awarded funding to lead UCLA’s Cancer Survivorship Center of Excellence as part of the LIVESTRONG™ Survivorship Center of Excel- lence Network. Dr. Ganz is a pioneer in the assessment of quality of life in cancer patients and is active in clinical trials research with the National Surgical Adjuvant Breast and Bowel Project. She has focused many of her clinical and research efforts in the areas of breast cancer and its preven- tion, and was a member of the National Cancer Institute’s (NCI) Progress Review Group on Breast Cancer. At the Jonsson Cancer Center, she directs the UCLA Family Cancer Registry and Genetic Evaluation Program. Her other major areas of research include cancer survivorship and late effects of cancer treatment, cancer in the elderly, and quality of care for cancer patients. She is an associate editor for the Journal of Clinical Oncology, the Journal of the National Cancer Institute, and CA-A Journal for Clinicians. She currently serves on the NCI Board of Scientific Advisors and recently completed a term on the Board of Directors of ASCO. Sherry Glied, PhD, is professor and chair of the Department of Health Policy and Management of Columbia University’s Mailman School of Pub- lic Health. She holds a BA in economics from Yale University, an MA in Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT economics from the University of Toronto, and a PhD in economics from Harvard University. In 1992–1993, she served as a senior economist for health care and labor market policy to the President’s Council of Eco- nomic Advisers under Presidents Bush and Clinton. She was a participant in President Clinton’s Health Care Task Force and headed working groups on global budgets and on the economic impacts of the health plan. Her research on health policy has focused on the financing of health care ser- vices in the United States. She is the author of recently published articles and reports on women’s health insurance, expansions of children’s health insurance, Medicaid managed care, and the role of insurance in hospital care. Dr. Glied is past recipient of a Robert Wood Johnson Investigator Award, through which she has been studying the U.S. employer-based health insurance system. Her work in mental health policy has focused on the problems of women and children. She is a member of the MacArthur Foundation’s Network on Mental Health Policy, the IOM, the board of AcademyHealth, and the National Academy of Social Insurance and a research associate of the National Bureau of Economic Research. In 2004 Professor Glied served as chair of the AcademyHealth Annual Research Meeting. She was the 2004 winner of Research!America’s Eugene Garfield Economic Impact of Health Research Award. She is a senior associate editor of Health Ser�ices Research; an associate editor of the Journal of Health Politics, Policy, and Law; a member of the editorial board of the Milbank Quarterly; and a member of the editorial committee of the Annual Re�iew of Public Health. Jessie Gruman, PhD, is founder and president of the Center for the Ad- vancement of Health, an independent, nonpartisan Washington-based policy institute funded by the John D. and Catherine T. MacArthur Founda- tion; the Annenberg Foundation; and others, including the W. K. Kellogg Foundation and the Atlantic Philanthropies. Since it was established in 1992, the Center has worked to ensure that people are able to meet the demands placed on them by health information that is increasingly com- plex, health professionals who are increasingly specialized and pressed for time, and health care that is increasingly brilliant but chaotic. Dr. Gruman has worked on this same set of concerns in the private sector (AT&T), the public sector (National Institutes of Health), and the voluntary health sec- tor (American Cancer Society). She received her undergraduate degree from Vassar College and her PhD in social psychology from Columbia University. She is a professorial lecturer in the School of Public Health at The George Washington University and serves on the boards of trustees of the Advisory Panel on Medicare Education of the U.S. Department of Health and Hu- man Services, the Public Health Institute, the Sallan Foundation, and the Center for Information Therapy, among others. Dr. Gruman is a fellow of Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX A �� the Society of Behavioral Medicine and has received the Society’s awards for distinguished service and Leadership in Translation of Research to Practice. She was recognized for outstanding service by the APA and was honored by Research!America for her leadership in advocacy for health research. She is the recipient of an honorary doctorate in public policy from Carnegie Mellon University and the Presidential Medal of The George Washington University. She served as executive in residence at Vassar College, serves on the editorial board of The Annals of Family Medicine, and is a member of the APA, the Association for Psychological Science, and the Council on Foreign Relations. Dr. Gruman is the author of numerous articles and es- says published in scholarly journals and public media. Her book for the general public, After Shock: What to Do When the Doctor Gi�es You—or Someone You Lo�e—a De�astating Diagnosis (Walker Publishing, 2007), is about how people use scientific information to make decisions about their health care. Michael Hoge, PhD, is professor of psychology in the Psychiatry Depart- ment of the Yale University School of Medicine and director of Yale Be- havioral Health. He is past chair of the Behavioral Health Professional and Technical Advisory Committee of the Joint Commission on Accreditation of Healthcare Organizations and recipient of the 2001 Moffic Award for Ethi- cal Practice in Public Sector Managed Behavioral Healthcare. Dr. Hoge is an expert in workforce development in behavioral health. He is a founding member of The Annapolis Coalition on the Behavioral Health Workforce, which initiated a national, interprofessional effort to improve the recruit- ment, retention, and training of individuals who provide prevention and treatment services for persons with mental illnesses and substance use dis- orders. He is also senior editor of the recently released National Action Plan on Behavioral Health Workforce Development, which was commissioned by the federal Substance Abuse and Mental Health Services Administra- tion. Dr. Hoge has consulted on behavioral health workforce issues for the President’s New Freedom Commission on Mental Health, the IOM’s Com- mittee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders, and multiple states and organizations. He is senior edi- tor of three special journal issues on workforce development in behavioral health and author of numerous peer-reviewed articles on this topic. Jimmie C. Holland, MD, is attending psychiatrist and holder of the Wayne E. Chapman Chair in Psychiatric Oncology at the Memorial Sloan-Kettering Cancer Center, and professor of psychiatry at Weill Medical College of Cornell University. She is recognized internationally as the founder of the subspecialty of psycho-oncology. Starting in the mid-1970s, she conducted some of the first epidemiological studies related to the prevalence and Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT nature of psychological problems in patients with cancer. In 1977, she established the first Psycho-Oncology Committee as part of the NCI clini- cal trials group Cancer and Leukemia Group B, serving as chair through 2001. She was founding president of the International Psycho-Oncology Society (1984) and of the American Psychosocial Oncology Society (1986). Dr. Holland was senior editor of the first textbook in psycho-oncology, The Handbook of Psychooncology (1989), and of a second text, Psycho- Oncology (1998), both published by Oxford University Press. Similarly, she started the first international journal in the field, Psycho-Oncology, in 1992, and continues as its co-editor. Dr. Holland and Sheldon Lewis co-authored a book aimed at helping patients and their families cope with cancer—The Human Side of Cancer, published in 2000 by HarperCollins. As chair of the National Comprehensive Cancer Network’s Panel on Man- agement of Distress, Dr. Holland has worked since the Panel’s inception in 1997 to promulgate the first clinical practice guidelines for psychosocial care in cancer. The IOM elected her as a member in 1995, and she served on its National Cancer Policy Board. In 2000, she received the American Psychiatric Association’s Presidential Commendation. The American Can- cer Society (ACS) awarded her its Medal of Honor for Clinical Research in 1994, as well as the ASCO/ACS Lecture and Award in 2003. The 13th Claude Jacquillat Award for Clinical Cancer Research was presented to her in Paris in 2005. In April 2005, the Joseph Burchenal Award for Clini- cal Research was granted to Dr. Holland by the American Association for Cancer Research. Melissa M. Hudson, MD, is a full member of the Department of Oncol- ogy at St. Jude Children’s Research Hospital. She earned her MD from the University of Texas Medical School in Houston in 1983. She completed a pediatric residency at the University of Texas and then pursued pediatric hematology-oncology fellowship training at the M. D. Anderson Cancer Center. Dr. Hudson joined the St. Jude faculty in 1989. She is currently a member of the Leukemia/Lymphoma Division in the Department of Hematology Oncology. She has been principal investigator of St. Jude pe- diatric Hodgkin’s trials for the past 15 years. These trials have evaluated risk-adapted, response-based combined modality therapy regimens designed to reduce organ dysfunction and subsequent malignancies in long-term survivors. In 1993 Dr. Hudson became director of the After Completion of Therapy Clinic, which supervises the care of more than 5,000 long-term childhood cancer survivors treated in St. Jude trials. She has published widely on her research initiatives in pediatric Hodgkin’s disease, late treat- ment sequelae after childhood cancer, and health education of childhood cancer survivors. She is vice-chair of the Children’s Oncology Group Late Effects Steering Committee and co-chair of the Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX A �� and Young Adult Cancer. She also serves as pediatric section editor of the journal Cancer and on the editorial board of Pediatric Blood and Cancer and ASCO News & Forum. Sherrie Kaplan, PhD, is associate dean for the School of Medicine, professor of medicine and executive director, Center for Health Policy Research, Uni- versity of California, Irvine (UCI). She came to UCI from Tufts University School of Medicine and the Harvard School of Public Health, where she received the outstanding professor award for multiple consecutive years. Dr. Kaplan received her undergraduate, MPH, MSPH, and PhD from the University of California, Los Angeles, the latter in a joint program between public health and measurement psychology. One of the eminent social scien- tists in medicine, she is currently professor of medicine at the UCI School of Medicine. In her distinguished academic career, Dr. Kaplan has pioneered a number of areas of research. She has done ground-breaking research dem- onstrating that patients can be taught to participate effectively in medical decisions, with positive effects on their health outcomes. Her work on the application of psychometric techniques to assessment of the performance of varying levels of the health care system, from health care organizations to individual physicians, has made her a national expert on this current and controversial topic. Well known for her work in the development of measures of the quality of technical and interpersonal care, health status, and quality of life, particularly for vulnerable populations, she is now working on an innovative project among minority populations using com- munity-based minority “coaches” to train patients to participate effectively in chronic disease care, and is developing and modifying measures for as- sessing the project’s impact on quality of care and quality of life. Alicia K. Matthews, PhD, is a clinical psychologist and associate professor in the Department of Public Health, Mental Health, and Administrative Nursing at the University of Illinois at Chicago. Her primary research interests are in cancer prevention and control, psychosocial adjustment to illness, and identification of the sociocultural predictors of mental and physical health outcomes in African American and other underserved popu- lations. She has conducted funded research studies examining information seeking and treatment decision making among newly diagnosed African American cancer patients, factors associated with quality of life in lesbian women with breast cancer, prevalence and predictors of anxiety among survivors of breast cancer, evaluation of a education program on breast and cervical cancer education targeting African American lesbian and bisexual women, and mental illness stigma in members of the African American community. Ruth McCorkle, PhD, has over 28 years of experience in cancer control and Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT psychosocial oncology research. She is a national and international leader in cancer nursing and education and cancer control research. She was the first research chair of the Oncology Nursing Society, and is a charter member of the Oncology Nursing Society, the International Society of Nurses in Cancer Care, and the American Psychosocial Oncology Society. She has served on the board of directors of all three organizations and is currently president of the latter. Dr. McCorkle has served as a member of the study sections of the National Cancer Institute and the National Institute of Nursing Research. She was on the Board of Scientific Advisors for NCI and is currently on the External Scientific Advisory Board of the Children’s Oncology Group. In the early 1980s, she obtained the first nonmedical NCI Institutional Re- search Training Grant and opened the door for other nonmedical fields to become competitive in securing funding. She was elected to the American Academy of Nursing in 1970 and the IOM in 1990 and recently served on the committee to review NIH centers. Dr. McCorkle is Florence S. Wald Professor of Nursing and has twice been designated an American Cancer Society Professor (1986–1991, 1992–1996). She is director of Yale’s Cen- ter for Excellence in Chronic Illness Care and was chair of the School of Nursing’s doctoral program from 1998 to 2004. Dr. McCorkle has won numerous awards recognizing her outstanding contributions to nursing science and oncology nursing. She has done landmark research on the psy- chosocial ramifications of cancer, testing the effects of a specialized nursing intervention program on helping patients and caregivers manage the con- sequences of cancer and its treatment, enhancing their quality of life, and improving their survival. In 1988, she received the Outstanding Research Award from the Pennsylvania Nurses Association. She was recognized again in 1993 as Nurse Scientist of the Year by the American Nurses Association and in 1994 received the Distinguished Research Award from the Oncology Nursing Society. In 2004, she was elected to the Connecticut Academy of Science and Engineering. Most recently, she was awarded the Distinguished Scholar in Nursing by the College of Nursing, New York University. Harold Alan Pincus, MD, is vice chair of the Department of Psychiatry and associate director of the Irving Institute for Clinical and Translational Research at Columbia University and director of Quality and Outcomes Research at New York-Presbyterian Hospital. He also serves as senior scientist at the RAND Corporation. Previously, he was director of RAND- University of Pittsburgh Health Institute and executive vice chairman of the Department of Psychiatry at the University of Pittsburgh, where he still maintains an adjunct professorship. He is director of The Robert Wood Johnson Foundation’s National Program on Depression in Primary Care: Linking Clinical and Systems Strategies and the Hartford Foundation’s National Program on Building Interdisciplinary Geriatric Research Centers. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX A ��1 Dr. Pincus has also served as deputy medical director of the American Psy- chiatric Association and founding director of its Office of Research, and as executive director of the American Psychiatric Institute for Research and Education. Prior to joining the American Psychiatric Association, he was special assistant to the director of the National Institute of Mental Health. Dr. Pincus has had a particular research interest in the practice of evidence- based medicine; quality improvement; and the relationships among general medicine, mental health, and substance abuse, developing and empirically testing models of those relationships. He currently maintains a small private practice specializing in major affective disorders and has spent one evening a week for 22 years at a public mental health clinic, caring for patients with severe mental illness. Dr. Pincus graduated from the University of Pennsylvania and received his medical degree from Albert Einstein College of Medicine in New York. Lee S. Schwartzberg, MD, FACP, is a senior partner and medical director at the West Clinic, a 29-physician oncology, hematology, and radiology practice in Memphis, Tennessee. He received fellowship training in medical oncology and hematology at the Memorial Sloan-Kettering Cancer Center, where he also served as chief medical resident and was a founding member of the institutional ethics committee. Dr. Schwartzberg is a clinical profes- sor of medicine at the University of Tennessee College of Medicine. He is founder and medical director for the Baptist Centers for Cancer Care Cancer Genetics Program and the Stem Cell Transplant Program. He also serves as chair of the Baptist Comprehensive Breast Center multidisciplinary program. His major research interests are new therapeutic approaches to breast cancer, targeted therapy, and supportive care. Dr. Schwartzberg was principal investigator for the Baptist Cancer Institute Community Clini- cal Oncology Program from 1995 to 2000. Since then he has focused his research interests as president of the Accelerated Community Oncology Research Network (ACORN). Dr. Schwartzberg was awarded the 2004 Jefferson Award for community service. He is founding editor-in-chief of the journal Community Oncology and serves on the editorial board of the Journal of Supporti�e Oncology. He has authored more than 60 research papers and maintains a private practice in medical oncology. Edward H. Wagner, MD, MPH, FACP, is a general internist/epidemiolo- gist and director of the MacColl Institute for Healthcare Innovation at the Center for Health Studies (CHS) Group Health Cooperative. His research and quality improvement work focus on improving the care of seniors and others with chronic illness. Since 1998, he has directed Improving Chronic Illness Care, a national program of The Robert Wood Johnson Founda- tion. He and his MacColl Institute colleagues developed the Chronic Care Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT Model, which has now been used in quality improvement programs world- wide. He also is principal investigator of the Cancer Research Network, an NCI-funded cancer research consortium of 13 HMO-based research programs. He has written two books and more than 250 publications. He serves on the editorial boards of Health Ser�ices Research, the British Medical Journal, the Journal of Cancer Sur�i�orship, and the Journal of Clinical Epidemiology. Terrie Wetle, PhD, is associate dean of medicine for public health and pub- lic policy at Brown Medical School and is professor of community health. She was most recently deputy director, National Institute on Aging at NIH. Formerly, she was director for the Braceland Center for Mental Health and Aging at the Institute of Living and associate professor of community medicine and health care, University of Connecticut Health Center School of Medicine. She is former associate director of the Division on Aging and assistant professor of medicine at Harvard Medical School. At Yale, she was director of the Program in Long Term Care Administration and assistant professor of epidemiology and public health. She previously worked in fed- eral government as a social policy analyst for the Administration on Aging, Department of Health and Human Services, and in local government as director of an area agency on aging in Portland, Oregon. She is past presi- dent of the Gerontological Society of America and is currently president of the American Federation for Aging Research. Her research interests include social gerontology, the organization and financing of health care, ethical is- sues in geriatric care and public health, and end-of-life care. She has more than 200 scientific publications and serves on the editorial boards of several journals. Her most recent edited books are Financing Long Term Care: The Integration of Public and Pri�ate Roles and Impro�ing Aging and Public Health Research: Qualitati�e and Mixed Methods. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� Appendix B Study Methods A variety of different strategies were used to carry out this study. Al- though not explicitly stated in the committee’s multifocal scope of work (found at the end of this appendix), the initial, linchpin activity was to define “psychosocial services.” The committee’s next logical activity was to operationalize this definition by identifying and defining the specific services it encompasses. The importance of this effort was heightened by direction from the National Institutes of Health (NIH) that the identifica- tion of models for the delivery of psychosocial services (Task 4 in the scope of work) was of paramount interest. To identify models of service delivery, the committee needed to delineate clearly just what services were to be delivered. Third, underlying the identification of psychosocial services and service delivery models was the committee’s commitment to identifying ef- fecti�e services and delivery models—those that had empirical evidence to support their ability to bring about positive change in individuals’ health care and health. The methods the committee used to undertake these three activities, as well as the tasks specified in the study’s scope of work, are discussed below. DEFINING PSYCHOSOCIAL SERVICES The committee searched for and located a limited number of definitions of psychosocial services. These definitions and their varying conceptual underpinnings are presented below. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Review of Existing Definitions “Psychosocial support” is identified by multiple parties as an essential component of quality cancer care (American Psychosocial Oncology Soci- ety, undated; National Breast Cancer Centre and National Cancer Control Initiative, 2003; IOM and NRC, 2004; President’s Cancer Panel, 2004; Association of Community Cancer Centers, 2006). However, there does not appear to be a commonly shared definition or listing of the various types of psychosocial services or a conceptual framework underpinning various definitions. Psychosocial services literally could be interpreted as referring to all psychological (mental health, emotional issues) services, as well as all services needed to address adverse social conditions. However, several expert bodies explicitly identify several other dimensions of psychosocial needs/services. The Association of Community Cancer Centers (2006:25), for example, defines psychosocial oncology care (which it also refers to as “psychosocial distress management services”) as services “to address the psychological, emotional, spiritual, social, and practical aspects that pa- tients and their families have as a consequence of cancer and its treatment [emphasis added].” The Institute of Medicine (IOM) report Impro�ing Palliati�e Care for Cancer (IOM and NRC, 2001) also identifies spiritual, religious, and existential distress separately from psychosocial distress. Are spiritual, religious, and existential concerns mutually exclusive and concep- tually different? Are “psychological” and “emotional” concerns? Should they and “practical concerns” be included separately as components of a definition of psychosocial services? The IOM report Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004:70–71) presents “brief descriptions of the full range of psychosocial services [emphasis added].” However, it then discusses only “basic social and emotional support,” which “focuses on adjustment to diagnosis, apprehension regarding treatment, and existential concerns,” and psychoeducational approaches; cognitive and behavioral interventions, such as guided imagery, biofeedback, progressive muscle relaxation, and meditation; psychotherapeutic interventions, such as group therapy and counseling; pharmacological interventions; and complementary therapies, such as yoga and massage. It contains no discussion of social services addressing such practical concerns as transportation, child care, financial problems, work, or educational problems. Australia’s Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer define a psychosocial intervention as “treatment that is intended to address psychological, social, and some spiritual needs [em- phasis added]” but does not clarify which spiritual issues are and are not to Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� be addressed (National Breast Cancer Centre and National Cancer Control Initiative, 2003:212). The recent IOM publication From Cancer Patient to Cancer Sur�i�or: Lost in Transition includes “behavioral” issues in its definition of psycho- social services, that is services relating to the psychological, social, behavioral, and spiritual as- pects of cancer, including education, prevention and treatment of problems in these areas. (IOM and NRC, 2006:482) The report addresses the need for behavioral interventions in such areas as smoking cessation, physical activity, nutrition and diet, and weight manage- ment. It also reviews the use of complementary and alternative medicine. The inclusion of behavioral issues is consistent with the scope of issues addressed by the American Psychosocial Oncology Society (APOS) in its mission statement: to “advance the science and practice of psychosocial care for people with cancer . . . in the areas of psychological, social, behav- ioral, and spiritual aspects of cancer” (American Psychosocial Oncology Society, undated). The inclusion of these issues is also consistent with the American Psychological Association’s definition of psychology: Psychology is the study of the mind and behavior. The discipline embraces all aspects of the human experience . . . “the understanding of behavior” is the enterprise of psychologists. (American Psychological Association, 2006) However, this definition is not wholly consistent with a definition of behav- ioral medicine that conversely subsumes psychosocial issues: Behavioral Medicine is the interdisciplinary field concerned with the de- velopment and integration of behavioral, psychosocial, and biomedical science knowledge and techniques relevant to the understanding of health and illness, and the application of this knowledge and these techniques to prevention, diagnosis, treatment and rehabilitation. (SBM, 2006:1) NIH notes that “there has been a lack of definitional clarity to several concepts and terms such as palliative care, end of life care, and hospice care” (NIH, 2004:3). In its review of definitions of psychosocial services, the committee also found a similar need for better definitional and concep- tual clarity regarding “psychosocial services.” Conceptual Framework The committee sought to use a definition that had a conceptual and empirical basis. Conceptual frameworks considered included (1) the list of “psychosocial and environmental problems” contained in the Ameri- can Psychiatric Association’s Diagnostic and Statistical Manual of Mental Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Disorders (DSM-IV-TR), (2) the National Comprehensive Cancer Net- work’s (NCCN) Clinical Practice Guidelines for Distress Management, (3) illness self-management approaches, (4) conceptual models of health- related quality of life, and (5) other frameworks. Frameworks DSM-IV-TR list of psychosocial and environmental problems DSM-IV-TR, used by clinicians to diagnose and plan treatment for both mental disorders and less serious mental health problems, includes assessment of psychoso- cial and environmental problems that may affect diagnosis, treatment, and prognosis as one of five dimensions (axes)1 to be evaluated when planning treatment. It categorizes Psychosocial and Environmental Problems in Axis IV as • Problems with primary support group—e.g., death of a family member; health problems or discord in family; separation, divorce, estrangement; abuse or neglect. • Problems related to the social environment—e.g., death or loss of a friend, inadequate social support, living alone, discrimination. • Educational problems—e.g., literacy, school achievement, disrup- tions to education. • Occupational problems—e.g., unemployment, potential job loss, difficult work conditions. • Housing problems—e.g., homeless, unsafe or inadequate housing. • Economic problems—e.g., inadequate income for routine life needs, difficulty paying for health care. • Problems with access to health care—e.g., inadequate health in- surance, transportation problems, geographic hardship accessing care. • Problems related to interactions with the legal system—e.g., arrest or fear of arrest, use of illegal substances, incarceration. • Other psychosocial and environmental problems—e.g., no tele- phone, exposure to natural disaster or violence, unavailability of social service agencies. The American Psychiatric Association describes this categorization and DSM-IV-TR’s multiaxial assessment approach as a “format for organiz- ing and communicating clinical information, for capturing the complexity 1 The other four axes are Axis I, Clinical Disorders and Other Conditions that may be a focus of clinical psychiatric care; Axis II, Personality Disorders and Mental Retardation; Axis III, General Medical Conditions; and AXIS V, Global Functioning. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� of clinical situations, and for describing the heterogeneity of individuals presenting with the same diagnosis. In addition, the multiaxial system pro- motes the application of the biopsychosocial model in clinical, educational, and research settings” (APA, 2000:27). National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines for Distress Management The IOM report Meeting Psycho- social Needs of Women with Breast Cancer (IOM and NRC, 2004) in- dicates that psychosocial services are those services intended to alleviate “psychosocial distress.” It defines psychosocial distress in cancer as “an unpleasant emotional experience that may be psychological, social, or spiri- tual in nature [emphasis added]” (p. 2) or “an unpleasant experience of an emotional, psychological, social or spiritual nature that interferes with the ability to cope with cancer treatment” (p. 12). It notes that such distress exists along a continuum ranging from the normal and often expected feelings of fear, worry, sadness, and vulnerability related to cancer and its treatment to more severe and disabling symptoms, such as severe anxiety or major depression. The definition of distress in Meeting Psychosocial Needs of Women with Breast Cancer is based on that contained in the NCCN Clinical Prac- tice Guidelines for Distress Management (NCCN, 2006). These consensus- based guidelines, developed by 20 of the nation’s comprehensive cancer centers, use the word “distress” “to characterize the psychosocial aspects of patient care” (p. MS-2) because “it is more acceptable and less stigmatizing than ‘psychiatric,’ ‘psychosocial,’ or ‘emotional’; sounds ‘normal’ and less embarrassing; [and] can be defined and measured by self report” (p. DIS-1). These guidelines define such distress as “a multifactorial, unpleasant emo- tional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment” [emphasis added] (p. DIS-2). Thus, the NCCN definition distinguishes among at least three sources of psychosocial distress: (1) psychological problems (cogni- tive, behavioral, and emotional), (2) social problems, and (3) spiritual problems. However, NCCN’s screening tool to detect significant levels of patient distress additionally addresses other sources of distress, including practical problems, such as transportation and child care, and physical problems, such as pain, difficulty breathing, fever, changes in urination, and dry/itchy skin. Illness self-management programs A variety of programs and interven- tions have been developed to assist individuals in managing a wide range of chronic illnesses. These programs are often referred to as “illness self- management” programs. Self-management is defined as an individual’s Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT “ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condi- tion” (Barlow et al., 2002:178). This term is associated most often with conditions such as diabetes mellitus whose severity and progression can be significantly affected by lifestyle changes. There is now considerable evidence for many (noncancer) chronic diseases that interventions directed at improving patients’ knowledge, skills, and confidence in managing their illness improves outcomes (Chodosh et al., 2005). One particular illness self-management approach that has an explicitly stated conceptual model and has been empirically validated for a variety of chronic illnesses (e.g., heart disease, lung disease, stroke, and arthritis) is that of Stanford University (Stanford University School of Medicine, 2006). The Stanford model addresses the day-to-day tasks and skills necessary to live successfully with a chronic illness, including behavioral health prac- tices, social and interpersonal role functioning, and emotional management (Lorig and Holman, 2003). These tasks and skills pertain, for example, to monitoring illness symptoms; using medications appropriately; practicing behaviors conducive to good health in such areas as nutrition, sleep, and exercise; employing stress reduction practices and managing negative emo- tions; using community resources appropriately; communicating effectively with health care providers; and practicing health-related problem solving and decision making. This model has been shown to reduce pain and dis- ability, lessen fatigue, decrease needed visits to physicians and emergency rooms, and increase self-reported energy and health (Bodenheimer et al., 2000; Lorig et al., 2001; Lorig and Holman, 2003). Illness self-management also is one of the essential components of the Chronic Care Model, which can help inform the development of a conceptual framework. Health-related quality of life Conceptual models developed to describe the variety of effects cancer has on psychological health, functional abilities, family relationships and other social roles, and important aspects of life also underpin numerous instruments designed to measure health-related quality of life (HRQOL). Examples of these instruments include “generic” instruments used to assess problems for any type of illness, such as the Short Form Health Survey (SF) instruments of the Medical Outcomes Study, and instruments used specifically to assess problems occurring in patients with cancer. These latter instruments (developed for research purposes) include, for example, the Cancer Rehabilitation Evaluation System, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, Functional Assessment of Cancer Therapy (FACT) instruments, and the Quality of Life Breast Cancer Instrument (IOM and NRC, 2004). However, the committee that authored the IOM report From Cancer Patient to Cancer Sur�i�or: Lost In Transition found no agreed- Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� upon conceptual model for HRQOL, although these instruments frequently address physical, psychological, social, and spiritual domains. Need for Face Validity The committee sought a definition that, in addition to being conceptu- ally sound, would have face validity to cancer patients and oncology prac- titioners. In numerous reports on cancer care reviewed by the committee, cancer patients, their families and informal caretakers, health care provid- ers, and researchers identify many nonbiological adverse consequences of cancer and its treatment, and describe cancer survivors’ need for various types of nonmedical assistance in addressing these consequences. These problems and needs were used to inform the committee’s development of a definition of psychosocial services for the present study. These problems and needs, discussed in Chapter 1 of this report, include emotional and mental health problems, developmental problems, cognitive problems, problems in performing activities of daily living, problems in fulfilling family and social roles and relationships, problems in employment, financial and health insurance issues, spiritual and existential needs, problems in adopting and maintaining good health behaviors, and other needs. Definition The committee considered and deliberated on the above varying defini- tions and conceptual frameworks at and subsequent to its first meeting. The committee acknowledged that there is a vast array of adverse psychologi- cal and social events in people’s lives, but that not all of these events may have implications for health or health care. For example, engagement in illegal activity is a serious social problem but may not have implications for patients’ health care (unless, for example, they are incarcerated or suffer emotional distress as a result of their activity). Many people also receive psychosocial services for reasons unrelated (or less directly related) to health care. For example, children in the juvenile justice and child welfare systems receive psychosocial services partly in an effort to help them avoid prosecution and the repetition of illegal behaviors and to strengthen their family. The committee determined that, to be understandable across multiple health and human services sectors, its definition should refer to the subset of psychosocial services that can help improve health and health care. Ac- cordingly, the committee adopted the following as its definition: Psychosocial health services are psychological and social services and inter- ventions that enable patients, their families, and health care providers to Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT optimize biomedical health care and to manage the psychological/behav- ioral and social aspects of illness and its consequences so as to promote better health. For the reasons given above, this definition uses the wording “psychoso- cial health services” to make clear that it refers to services that “enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological, social, and behavioral aspects of illness” as opposed to those psychosocial services that might enable individuals to meet other goals, such as strengthening family functioning or avoiding incarceration. The committee also decided to adopt the word- ing “psychological/behavioral” because of the lack of consistent usage of “psychological” and “behavioral” in the scientific community; for example, the American Psychological Association subsumes behavior under psychol- ogy, while others use “behavioral” as the umbrella term. The committee’s definition also includes but distinguishes between psychosocial ser�ices (i.e., activities or tangible goods directly received by and benefiting the patient or family) and psychosocial inter�entions (activities that enable the provision of those services, such as needs assessment, referral, or care coordination). IDENTIFYING EFFECTIVE PSYCHOSOCIAL HEALTH SERVICES AND MODELS OF SERVICE DELIVERY Effective Psychosocial Health Services The committee identified effective psychosocial health services by first identifying the psychosocial health needs experienced by cancer patients. Psychosocial needs were identified by examining peer-reviewed periodical literature and prior authoritative reports addressing this topic, including the following: DHHS (Department of Health and Human Services). 2003. Achie�ing the promise: Transforming mental health care in America. New Freedom Commission on Mental Health Final Report. DHHS Pub- lication No. SMA-03-3832. Rockville, MD: DHHS. Holland, J. C., B. Andersen, M. Booth-Jones, W. Breitbart, M. Dabrowski, M. Dudley, S. Fleishman, P. Fobair, G. Foley, C. Fulcher, D. Greenberg, C. Greiner, G. Handzo, J. Herman, P. Jacobsen, S. Knight, M. Levy, R. McAllister-Black. M. Riba, J. Schuster, N. Slatkin, A. Valentive, J. Weinberg, and M. Zevon. 2003. NCCN distress management clinical practice guidelines in oncology. Jour- nal of the National Comprehensi�e Cancer Network 1:344–374. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B ��1 IOM (Institute of Medicine). 1999. Ensuring quality cancer care. Ed- ited by M. Hewitt and J. V. Simone. Washington, DC: National Academy Press. IOM. 2000. Bridging disciplines in the brain, beha�ioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. IOM. 2006. Impro�ing the quality of health care for mental and substance-use conditions. Washington, DC: The National Acad- emies Press. IOM and NRC (National Research Council). 2000. Enhancing data systems to impro�e the quality of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Interpreting the �olume-outcome relationship in the context of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Impro�ing palliati�e care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. IOM and NRC. 2003. Childhood cancer sur�i�orship: Impro�ing care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. C. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2005. Assessing the quality of cancer care: An approach to measurement in Georgia. Edited by J. Eden and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer sur�i�or: Lost in transition. Edited by M. Hewitt, S. Greenfield, and E. Stovall. Washington, DC: The National Academies Press. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical practice guidelines for the psychosocial care of adults with cancer. http://www.nhmrc.gov.au/publications/synopses/_files/ cp90 . NIH (National Institutes of Health). 2004. Symptom management in cancer: Pain, depression and fatigue. The National Institutes of Health State-of-the-Science Conference. Monographs Journal of the National Cancer Institute 32. NIH (National Institutes of Health). 2004. Statement on impro�ing end-of-life care. Paper read at National Institutes of Health State- of-the-Science Conference, December 6–8, 2004, Bethesda, MD. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT President’s Cancer Panel. 2004. Li�ing beyond cancer: Finding a new balance. President’s Cancer Panel 2003–2004 annual report. Be- thesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services. From this literature, the committee was able to distinguish among the psychosocial health problems encountered by cancer patients and their families. These include problems in (1) coping with emotions accompa- nying disease and treatment; (2) comprehensively managing their illness; (3) changing specific behaviors to minimize the impact of disease; (4) ob- taining material and logistical resources, such as transportation, needed to manage the illness; (5) managing disruptions in work, school, and family life; and (6) managing financial burdens. The committee initially identified 38 services that could potentially be effective in addressing these problems. The committee then undertook systematic searches for evidence of the ef- fectiveness of these services and reviews of this evidence. The large number of psychosocial services in question and the commit- tee’s desire to be thorough in its search for evidence led to very large sets of evidence to review. To make the evidence review manageable, the commit- tee used a serial search strategy (illustrated in Table B-1) that gave priority to both (1) reviewing interventions that have been specifically tested in populations of cancer survivors, and (2) making use of existing systematic reviews, where available. Each search first aimed to identify meta-analyses and systematic re- views pertaining to the effectiveness of the intervention when provided to cancer survivors (Strategy A). If this effort generated sufficient information for reviewers’ assessment of evidence, the search for evidence ended, and reviewers assessed the evidence obtained. If Strategy A provided no or insuf- ficient evidence, the search was expanded to Strategy B, which additionally sought evidence from individual controlled and observational studies with cancer survivors, and meta-analyses and systematic reviews of the effective- ness of the service in populations with conditions other than cancer. Single studies of the service in populations with conditions other than cancer were given lowest priority. The search parameters included English-language ar- TABLE B-1 Serial Search Strategies Type of Study Intervention Tested in Cancer Survivors Intervention Tested in Populations with Other Conditions Meta-analyses and Systematic Reviews Strategy A Strategy B Single Controlled or Observational Studies Strategy B Strategy C Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� ticles published from 1980 to 2007 in Medline, PsychInfo, CINAHL, and EMBASE databases. When known, evidence from books, book chapters, and other governmental or nongovernmental evidence reports not indexed in Medline, PsychInfo, CINAHL, and EMBASE was included. Each evi- dence review involved two reviewers who examined individual studies and the evidence in the aggregate with the aid of standard evidence reporting and scoring forms. Each review team made a determination of the extent to which the evidence showed the intervention to be effective in addressing the identified need. Search terms for each of the 38 candidate services are available from IOM study staff. When undertaking this review, the committee again encountered a lack of clarity in the terminology used to refer to psychosocial services (discussed above for psychosocial services in the aggregate and in Chapter 3 with respect to individual services). The absence of some definitions, other over- lapping definitions and constructs, and the absence of evidence for some services led the committee to “collapse” its list of psychosocial services to the final list of 15 listed in Table B-2. The findings of the committee’s evidence reviews are included in Chap- ter 3. The committee hopes that the development of a taxonomy and no- menclature for psychosocial health services and the use of stronger research methods will in the future enable more efficient and effective identification, retrieval, and analyses of evidence. The committee is concerned that the absence of a controlled vocabulary for psychosocial health services may have led to inadvertent omission of some relevant evidence in its analyses of the effectiveness of individual psychosocial health services. Effective Models of Service Delivery The committee defined the term “models”—as used in the sponsor’s task statement—to mean inter�entions that have been found effective in de- livering psychosocial health services to patients with cancer or other serious chronic illnesses in a community setting. Interventions should (1) have been used to deliver psychosocial health services consistent with the committee’s definition, and (2) have been evaluated and found effective in improving patient outcomes. Identified outcomes of interest included (but were not necessarily limited to) the following: • Increased survival • Functional status—improving function or preventing or slowing decline • Decreased comorbidity (e.g., depression) Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT TABLE B-2 Psychosocial Needs and Formala Services to Address Them Psychosocial Need Health Services Information about illness, treatments, health, and services • Provision of information, e.g., on illness, treatments, effects on health, and psychosocial services, and the provision of help to patients/families in understanding and using the information Help in coping with emotions accompanying illness and treatment • Peer support programs • Counseling/psychotherapy to individuals or groups • Pharmacological management of mental symptoms Help in managing illness • Comprehensive illness self-management/self-care programs Assistance in changing behaviors to minimize impact of disease • Behavioral/health promotion interventions, such as: – Provider assessment/monitoring of health behaviors (e.g., smoking, exercise) – Brief physician counseling – Patient education, e.g., in cancer-related health risks and risk- reduction measures Material and logistical resources, such as transportation • Provision of resources Help in managing disruptions in work, school, and family life • Family and caregiver education • Assistance with activities of daily living (ADLs), instrumental ADLs, chores • Legal protections and services, e.g., under Americans with Disabilities Act and Family and Medical Leave Act • Cognitive testing and educational assistance Financial advice and/ or assistance • Financial planning/counseling, including management of day-to- day activities such as bill paying • Insurance (e.g., health, disability) counseling • Eligibility assessment/counseling for other benefits (e.g., Supplemental Security Income, Social Security Disability Income) • Supplement financial grants aThe committee notes that, as discussed in Chapters 1 and 2, family members and friends and other informal sources of support are key providers of psychosocial health services. This table includes only formal sources of psychosocial support—those that must be secured through the assistance of an organization or agency that in some way enables the provision of needed services (sometimes at no cost or through volunteers). • Symptom reduction, either physical (e.g., pain, fatigue) or psycho- logical (e.g., anxiety, depressive symptoms) (recognizing that pain and fatigue can be symptoms of psychological conditions as well) • Increased adherence to a treatment regimen • Reduction in avoidable inpatient or emergency department care • Improvement in an evidence-based aspect of quality health care, Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� such as improved shared decision making by patients and their health care providers; improved coordination of care across mul- tiple care providers; patients’ timely receipt of information on their health status, treatment options, or plan of care; and patients’ in- creased ability to manage their illness • Improved employment and work performance • Improved educational performance • Improved family functioning The committee used four approaches to identify such interventions: • Review of previous IOM studies and other expert reports (listed above) • Gathering of the knowledge of effective interventions among com- mittee members • Solicitation of recommended effective interventions from other expert organizations and individuals • A search of the peer-reviewed literature The committee placed greatest value on identifying models that (1) are clearly defined with respect to their conceptual basis, purpose, and compo- nent activities; (2) have been successful in achieving their stated purpose as demonstrated by reliable and valid evidence; and (3) have characteristics that promote their uptake. The strategy used by the committee to search the peer-reviewed literature is available from the IOM study director. Expert organizations contacted to help identify effective models/interventions included the following: Academic Chronic Care Collaborative Academy of Psychosomatic Medicine Administration on Aging, Department of Health and Human Services (DHHS) American Cancer Society American College of Surgeons’ Commission on Cancer American Psychiatric Association American Psychological Association American Psychosocial Oncology Society American Society of Clinical Oncology American Society of Pediatric Hematology/Oncology Association of Cancer Online Resources Association of Community Cancer Centers Association of Oncology Social Workers Association of Pediatric Oncology Social Workers Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Children’s Oncology Group Health Resources and Services Administration, DHHS Lance Armstrong Foundation Leukemia and Lymphoma Society National Coalition for Cancer Survivorship National Comprehensive Cancer Network National Conference of State Legislatures National Council on Aging National Initiative for Children’s Healthcare Quality National Quality Forum Oncology Nursing Society Robert Wood Johnson Community Partnerships for Older Adults Substance Abuse and Mental Health Services Administration, DHHS Centers for Disease Control and Prevention Veterans Administration The committee’s search yielded 10 interventions that met its criteria and could serve as models for the delivery of psychosocial health services. These are identified and discussed in Chapter 4. OTHER TASKS IN STUDY SCOPE OF WORK The committee’s scope of work specified nine tasks (one of which was the identification of models of psychosocial care as described above). The remaining eight called for the following: • Review of the recommendations of previous IOM and other reports on psychosocial services • Determination of why the recommendations contained in prior reports were not implemented and of possible ways to address barriers to care • Documentation of – types of services needed/provided – availability and use of services – who is using services and how they are accessed – what patients are told/given as their condition evolves (flow of care) – provider capacity – how services are paid for in various community settings • Analysis of reimbursement issues and development of recommen- dations for change • Analysis of workforce issues, including current and overall capacity required in the community to meet psychosocial health care needs Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� and the expertise of various disciplines in the delivery of required services (e.g., psychiatry, psychology, social work, nursing, pastoral care, oncology) • Identification of best-practice training programs • Development of an applied clinical research agenda • Development of a dissemination and implementation plan for dem- onstration models Evidence to guide the committee’s work in these areas was obtained from three main sources: (1) searches of peer-reviewed publications and grey literature (including the review of previous IOM and other reports identified in Task 1); (2) collection of information from psychosocial ser- vice providers from their websites and ad hoc follow-up interviews with organizational personnel; and (3) interviews of experts in specific areas, such as the preparation of the workforce in salient professions, Medicare reimbursement, and quality measurement. The relevant published evidence, individuals interviewed, and organizations contacted are listed in each chapter to which they pertain. The committee encountered a few instances in which it was not possible to provide the specific outcome requested in certain tasks. For example, Task 6, pertaining to the workforce, requested “estimates of overall ca- pacity required in the community in order to meet need, via modeling or other methods, using existing health workforce data and prevalence data of psychosocial problems.” In Chapter 7, the committee describes the ab- sence of reliable data on the knowledge and expertise of various disciplines in the delivery of psychosocial health care. The additional wide variety of licensed and unlicensed providers (as well as informal sources of support), the varying combinations in which they can be deployed across a similarly wide array of psychosocial health services, and the numerous variables that would be required to estimate the current capacity and needs of the work- force brought the committee to the same conclusion as others who have addressed the production of workforce estimates: that efforts to plan the size, composition, and distribution of the nation’s workforce are character- ized by frequent failures and large forecasting errors. This determination that the production of “estimates of overall capacity required in the com- munity in order to meet need” was not feasible (and perhaps not useful) is discussed in Chapter 7. The scope of work also requested that the committee, “through inter- views and testimony . . . determine why the recommendations contained in prior reports were not implemented.” The committee’s listing of the many recommendations of previous reports that pertain to psychosocial health services is provided in Appendix C. The committee was not convinced that limited interviews and testimony would best illuminate why these numer- Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT ous recommendations were not implemented. The committee notes that problems with the successful dissemination and adoption of many types of innovations and guidelines for care are widespread in health care, as well as in other industries. A recent systematic review of the literature revealed multiple factors associated with successful implementation (see Box B-1), whose absence likely hinders the uptake of recommendations. The commit- BOX B-1 Key Factors Associated with Successful Dissemination and Adoption of Innovations Characteristics of the Innovation Innovation more likely to be adopted if it • Offers unambiguous advantages in effectiveness or cost-effectiveness. • Is compatible with adopters’ values, norms, needs. • Is simple to implement. • Can be experimented with on a trial basis. • Has benefits that are easily observed. • Can be adapted, refined, modified for adopter’s needs. • Is low risk. • Is relevant to adopter’s current work. • Is accompanied by easily available or provided knowledge required for its use. Sources of Communication and Influence Uptake of innovation influenced by • Structure and quality of social and communication networks. • Similarity of sources of information to targeted adopters, e.g., in terms of socio- economic, educational, professional, and cultural backgrounds. • Use of opinion leaders, champions, and change agents. External Influences Uptake of innovation influenced by • Nature of an organization’s relationships with other organizations. • Nature of an organization’s participation in formal dissemination and uptake initiatives. • Policy mandates. Linkages Among the Components Innovation more likely to be adopted if there are • Formal linkages between developers and users early in development. • Effective relationships between any designated “change agents” and targeted adopters. Characteristics of Individual Adopters Uptake of innovation influenced by individual’s • General cognitive and psychological traits conducive to trying innovations (e.g., tolerance of ambiguity, intellectual ability, learning style). • Context-specific psychological characteristics; e.g., motivation and ability to use the intervention in the given context. • Finding the intervention personally relevant. Structural and Cultural Characteristics of Potential Organizational Adopters Innovation more likely to be adopted if organization • Is large, mature, functionally differentiated, and specialized; has slack in re- sources; and has decentralized decision making. • Can identify, capture, interpret, share, and integrate new knowledge. • Is receptive to change through strong leadership, clear strategic vision, good management and key staff, and climate conducive to experimentation and risk taking. • Has effective data systems. • Is “ready” for change because of difficulties in current situation, fit between or- ganization and innovation, anticipated benefits, internal support and advocacy, available time and resources for change, and capacity to evaluate innovation’s implementation. The Uptake Process Innovation more likely to be adopted with • Flexible organizational structure that supports decentralized decision making. • Leadership and management support. • Personnel motivation, capacity, and competence. • Funding. • Internal communication and networks. • Feedback. • Adaptation and reinvention. SOURCE: Greenhalgh et al., 2004, as presented in IOM, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� tee took to heart the statement in its scope of work that “the committee will place greater priority on the depth of the analyses and recommendations as opposed to a broader array of less detailed analyses and recommendations” and determined that analysis of the multiple reasons why each recommen- dation failed to be implemented was not likely to be a fruitful undertaking. The committee therefore did not make determinations about why recom- BOX B-1 Key Factors Associated with Successful Dissemination and Adoption of Innovations Characteristics of the Innovation Innovation more likely to be adopted if it • Offers unambiguous advantages in effectiveness or cost-effectiveness. • Is compatible with adopters’ values, norms, needs. • Is simple to implement. • Can be experimented with on a trial basis. • Has benefits that are easily observed. • Can be adapted, refined, modified for adopter’s needs. • Is low risk. • Is relevant to adopter’s current work. • Is accompanied by easily available or provided knowledge required for its use. Sources of Communication and Influence Uptake of innovation influenced by • Structure and quality of social and communication networks. • Similarity of sources of information to targeted adopters, e.g., in terms of socio- economic, educational, professional, and cultural backgrounds. • Use of opinion leaders, champions, and change agents. External Influences Uptake of innovation influenced by • Nature of an organization’s relationships with other organizations. • Nature of an organization’s participation in formal dissemination and uptake initiatives. • Policy mandates. Linkages Among the Components Innovation more likely to be adopted if there are • Formal linkages between developers and users early in development. • Effective relationships between any designated “change agents” and targeted adopters. Characteristics of Individual Adopters Uptake of innovation influenced by individual’s • General cognitive and psychological traits conducive to trying innovations (e.g., tolerance of ambiguity, intellectual ability, learning style). • Context-specific psychological characteristics; e.g., motivation and ability to use the intervention in the given context. • Finding the intervention personally relevant. Structural and Cultural Characteristics of Potential Organizational Adopters Innovation more likely to be adopted if organization • Is large, mature, functionally differentiated, and specialized; has slack in re- sources; and has decentralized decision making. • Can identify, capture, interpret, share, and integrate new knowledge. • Is receptive to change through strong leadership, clear strategic vision, good management and key staff, and climate conducive to experimentation and risk taking. • Has effective data systems. • Is “ready” for change because of difficulties in current situation, fit between or- ganization and innovation, anticipated benefits, internal support and advocacy, available time and resources for change, and capacity to evaluate innovation’s implementation. The Uptake Process Innovation more likely to be adopted with • Flexible organizational structure that supports decentralized decision making. • Leadership and management support. • Personnel motivation, capacity, and competence. • Funding. • Internal communication and networks. • Feedback. • Adaptation and reinvention. SOURCE: Greenhalgh et al., 2004, as presented in IOM, 2006. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT mendations made in previous reports were not implemented, but calls attention to the findings contained in Box B-1. The committee used these evidence-based factors in successful uptake to shape its recommendations with respect to psychosocial health care and to guide its dissemination plan and early dissemination activities, and urges others to take these factors into account in planning other dissemination and uptake activities. The committee was convened by the IOM in May 2006. It gathered evidence and conducted its analyses between May 2006 and May 2007. At the five meetings it held during this period, the committee collected and reviewed evidence from the sources described above. The committee also relied on the efforts of several experts who prepared commissioned papers providing the committee with in-depth reviews of two key issues: “Effects of Distressed Psychological States on Adherence and Health Be- havior Change: Cognitive, Motivational, and Social Factors” by M. Robin DiMatteo, Kelly B. Haskard, and Summer L. Williams, all of the University of California, Riverside; and “Stress and Disease” by Sheldon Cohen and Denise Janicki-Deverts, both of Carnegie Mellon University. The committee’s draft report containing its recommendations was com- pleted and sent for external review in July 2007. The report was finalized in September 2007. PSYCHOSOCIAL SERVICES TO CANCER PATIENTS/FAMILIES IN A COMMUNITY SETTING: SCOPE OF WORK Scope The Institute of Medicine will conduct a study of the delivery of the diverse (i.e., not limited to mental health) psychosocial services needed by cancer patients and their families in community settings. The study will produce a report that includes 1. a description of how this broad array of services is provided; 2. existing barriers to access of such care; 3. an analysis of the capacity of the current mental health and oncol- ogy provider system to deliver such care, and the resources needed to deliver such care nationwide; 4. available training programs for professionals providing psychoso- cial and mental health services; 5. recommendations to address these issues; and 6. an “action plan” that focuses, in as much detail as possible, on how to overcome the already well known barriers to cancer survivors’ receiving needed psychosocial service. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B ��1 Methods The methods (including data collection and analysis) used to undertake the scope of work will be developed through the committee convened by the IOM. • The committee will place greater priority on the depth of the analy- ses and recommendations as opposed to a broader array of less detailed analyses and recommendations. • End-of-life care, is of lesser priority for this study, as it has received other attention in recent IOM reports, and includes additional is- sues that are beyond the resources of this study. • A workplan will be developed by the committee at its first meeting. Study Process Task 1 Review previous IOM and other report recommendations on this issue, including • AHRQ evidence-based practice reports. • DHHS (Department of Health and Human Services). 2003. Achie�- ing the promise: Transforming mental health care in America. New Freedom Commission on Mental Health Final Report. DHHS Pub- lication No. SMA-03-3832. Rockville, MD: DHHS. • Holland, J. C., B. Andersen, M. Booth-Jones, et al. NCCN distress management clinical practice guidelines in oncology. Journal of the National Comprehensi�e Cancer Network 1:344–374. • IOM (Institute of Medicine). 2000. Bridging disciplines in the brain, beha�ioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. • IOM. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. • IOM and NRC (National Research Council). 2001. Impro�ing palliati�e care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. • IOM and NRC. 2003. Childhood cancer sur�i�orship: Impro�ing care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. • IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. Holland. Washington, DC: The National Academies Press. • National Breast Cancer Centre and National Cancer Control Initiative. 2003. Australian clinical practice guidelines for the Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT psychosocial care of adults with cancer. http://www.nhmrc.gov. au/publications/cphome.htm. • The National Institutes of Health (NIH) State-of-the-Science Con- ference on Symptom Management in Cancer: Pain, Depression and Fatigue. Monographs Journal of the National Cancer Institute, No. �2, 2004 (especially the Panel’s summary findings, pp. 9–13). • NIH State-of-the-science conference on impro�ing end-of-life care, December 6–8, 2004. http://consensus.nih.gov/ta/024/ 024EndOfLifepostconfINTRO.htm. • Other mental health reports, e.g., – Interpreting the �olume-outcome relationship in the context of cancer care (IOM, 2001). – Enhancing data systems to impro�e the quality of cancer care (IOM, 2000). – Assessing the quality of cancer care: An approach to measure- ment in Georgia (IOM, 2005). Task 2 Through interviews and testimony to the committee, determine why the recommendations contained in prior reports were not implemented, and possible ways to address barriers to care. Interviews and testimony will be sought, for example, from cancer survivors; mental health patients with chronic disease; family members; managed care organizations, Cen- ters for Medicare & Medicaid Services; spiritual leaders/clergy; employers; specialty provider groups such as the American College of Surgeons; health care payers/insurers; advocates (cancer and mental health); peer outreach agencies; community delivery agencies; state health commissioners; and oncology providers. Interviews and testimony to the Committee about why recommenda- tions contained in the prior reports were not implemented will be secured both prior to the first meeting and during the time period encompassed by the first three committee meetings. Task 3 Using case histories, key informant studies of providers and pa- tients, or other means, document the • types of services needed/provided • availability and use • who is using services and how they access them • what they are told/given as condition evolves (flow of care) • provider capacity • how services are paid for in various community settings A strategy for implementing this task will be developed by the Committee Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� at its first meeting. Some of this information will be available from pub- lished health services research. However, the committee will need to discuss the best methods to use to attain reliable and generalizable information to answer others of these questions. For example, a large, nationally repre- sentative survey would be prohibitively expensive; however, focus groups typically do not provide generalizable information. The committee will address study methods and data sources at its first meeting. Task � Identify and characterize diverse models of psychosocial care for patients and families and the extent of evidence for their success (including models from other chronic diseases, noting parallels to cancer in report), including models from other than major, highly resourced centers. These models will be used to analyze how different barriers to care are addressed, or fail to be addressed. Models will be selected with attention to • stage/course of disease • economic disparities • population • community • developmental age of survivor The committee will identify models of psychosocial care to be analyzed in its first two meetings. The committee will review the evidence about these models at the later half of its five meetings. Sources looked to for models will include, for example: Sloan Kettering; Mayo Clinic, Kaiser Permanente; HRSA; VA System, Indian Health Service; CCOPS; Moffitt Cancer Center, primary care; and SAMHSA’s National Registry of Effective Programs and Practices (NREPP). The committee also will include in its review community service entities, such as CancerCare, Inc., in New York City and larger philanthropic agencies (e.g., the Wellness Community, Gilda’s Club) that provide an array of psychosocial support services and also use diverse outreach models (e.g., one-on-one, group, educational, crisis management) and modalities (e.g., telephone, teleconfer- ence, and online/virtual access) to deliver these services. It will also look to generic models of care delivery that have been shown to be effective across multiple diagnoses, such as the Chronic Care Model, Illness–Self Manage- ment Programs, and disease management programs. Models for delivering care will address how to address the broad array of factors that influence access to such services such as place of residence (rural versus urban), ethnic and cultural differences, and literacy and lan- guage barriers. However, given the complexity of this undertaking, it may not be possible to thoroughly explore diversity/health disparity issues. Es- pecially in looking at successful models, the sponsor is seeking more general Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT models to promote, with the understanding that some of these may need be modified to reach underserved communities. Task 5 Analyze reimbursement issues and develop recommendations for change, in part, by • a literature review on reimbursement for mental health services delivery and interview of payers (Medicare, Medicaid, and private insurers) to determine current policy and practices regarding reim- bursement; and • a determination of who is currently underwriting the array of psy- chosocial services required by cancer patients and families; e.g., service agencies, philanthropy, volunteerism, peer counseling, small service charges, etc. Task 6 Analyze workforce issues, including • review literature on current capacity of psychosocial service deliv- ery in community setting. • develop estimates of overall capacity required in the community in order to meet need, via modeling or other methods, using ex- isting health workforce data and prevalence data of psychosocial problems. • assess expertise in various disciplines to deliver required services (e.g., psychiatry, psychology, social work, nursing, pastoral care, oncology). Task 7 Develop training recommendations, including • Examine literature to identify best practice training programs aimed at improving access in the community. • Contact professional associations for data on training of oncolo- gists about mental health, on training of mental health specialists about chronic disease. • Training recommendations should address – stigma for both patients and providers; – accreditation; questions on licensure board exams (medical, nurse, Social work) in addition to training programs; – community care providers, i.e., psychosocial service providers (psychiatrists, psychologists, nurses, rehabilitation specialists, noncancer physicians, social workers, pastoral counselors) not affiliated with cancer treatment centers. The goal is to under- stand what training may be needed for people who neither work Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� in cancer clinics or centers nor routinely provide psychosocial services to survivors or their family members, but who might care for cancer patients/survivors/family members in the course of their work; and – emerging opportunities (e.g., telemedicine training). Task 8 Review literature to identify gaps in knowledge, and develop an applied clinical research agenda about • who needs services? • what type of assessment should be provided? • what type of services should be provided at various stages of dis- ease course? • who should deliver services? • are these interventions effective? • what kind of follow-up is needed? • are they cost effective in terms of disease course, other health out- comes, employment, etc.? • how are services paid for, including for family members? • what are the emerging opportunities (e.g. technological; length of survival)? Include specific recommendations where appropriate (e.g., for multi-center trials of health service delivery). Task 9 Develop a dissemination and implementation plan for successful, replicable, demonstration models. Product The committee will produce a report that addresses the above topics and includes • an action plan with policy objectives and recommendations for various stakeholders including federal agencies; • successful, replicable, demonstration models of effective, accessible psychosocial service delivery in communities; and • a plan for the evaluation of impact of the report by a third party— as a part of developing its recommendations, the committee will make recommendations to the sponsor about how the impact of the report could be evaluated. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Timeline This study will take place over 18 months. REFERENCES American Psychological Association. 2006. About APA. http://www.apa.org/about/ (accessed June 23, 2006). American Psychosocial Oncology Society. undated. APOS mission. http://www.apos-society. org/about/org/mission.aspx (accessed June 15, 2006). APA (American Psychiatric Association). 2000. Diagnostic and statistical manual of mental disorders, Text re�ision (DSM-IV-TR). 4th ed. Washington, DC: APA. Association of Community Cancer Centers. 2006. Cancer program guidelines. http://www. accc-cancer.org/PUBS/pubs_cpguidelines2006 (accessed June 1, 2006). Barlow, J., C. Wright, J. Sheasby, A. Turner, and J. Hainsworth. 2002. Self-management ap- proaches for people with chronic conditions: A review. Patient Education and Counseling 48(2):177–187. Bodenheimer, T., K. Lorig, H. Holman, and K. Grumbach. 2000. Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288(19): 2469–2475. Chodosh, J., S. C. Morton, W. Mojica, M. Maglione, M. J. Suttorp, L. Hilton, S. Rhodes, and P. Shekelle. 2005. Meta-analysis: Chronic disease self-management programs for older adults. Annals of Internal Medicine 143(6):427–438. Greenhalgh, T., G. Robert, F. MacFarlane, P. Bate, and O. Kyriakidou. 2004. Diffusion of innovations in service organizations: Systematic review and recommendations. The Mil- bank Quarterly 82(4):581–629. IOM (Institute of Medicine). 2006. Impro�ing the quality of health care for mental and sub- stance-use conditions. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2001. Impro�ing palliati�e care for cancer. Ed- ited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer sur�i�or: Lost in transition. M. Hewitt, S. Greenfield, and E. Stovall, eds. Washington, DC: The National Academies Press. Lorig, K., and H. Holman. 2003. Self-management education: History, definition, outcomes, and mechanisms. Annals of Beha�ioral Medicine 26(1):1–7. Lorig, K. R., P. Ritter, A. A. Stewart, D. Sobel, B. W. Brown, A. Bandura, V. M. Gonzalez, D. D. Laurent, and H. R. Holman. 2001. Chronic disease self-management pro- gram: 2-year health status and health care utilization outcomes. Medical Care 39(11): 1217–1223. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW, Australia: National Breast Cancer Centre. http://www.nbcc.org.au/bestpractice/resources/PCA131_ clinicalpracticeguid (accessed on September 14, 2007). NCCN (National Comprehensive Cancer Network). 2006. Distress management—�ersion 1.200�. http://www.nccn.org/professionals/physician_gls/PDF/distress (accessed Sep- tember 14, 2007). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX B �� NIH (National Institutes of Health). 2004. Statement on impro�ing end-of-life care. Paper read at National Institutes of Health State-of-the-Science Conference, December 6–8, 2004, Bethesda, MD. http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html. htm (accessed September 14, 2007). President’s Cancer Panel. 2004. Li�ing beyond cancer: Finding a new balance. President’s Can- cer Panel 2003–2004 Annual Report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services. SBM (Society of Behavioral Medicine). 2006. Definition. http://www.sbm.org/about/definition. asp (accessed September 14, 2007). Stanford University School of Medicine. 2006. Stanford self-management programs. http:// patienteducation.stanford.edu/programs/ (accessed June 25, 2006). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� Appendix C Recommendations from Prior Selected Reports TABLE C-1 Recommendations Addressing Psychosocial Services Report Recommendations Assure Provision of Psychosocial Services Improving the Quality of Health Care for Mental and Substance- Use Conditions (IOM, 2006) Overarching Recommendation 1 Health care for general, mental, and substance-use problems and illnesses must be delivered with an understanding of the inherent interactions between the mind/brain and the rest of the body. Ensuring Quality Cancer Care (IOM, 1999) Recommendation � Ensure the following elements of quality care for each individual with cancer: . . . • an agreed upon care plan that outlines goals of care; • access to the full complement of resources necessary to implement the care plan; . . . • a mechanism to coordinate services; and • psychosocial support services and compassionate care. NCCN Distress Management Clinical Practice Guidelines, (NCCN, 2006) • Distress should be recognized, monitored, documented, and treated promptly at all stages of disease. • Patients, families, and treatment teams should be informed that management of distress is an integral part of total medical care and provided appropriate information about psychosocial services in the treatment center and the community. continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Emotional and Social Support Guideline: The extent to which a person with cancer has support and feels supported has been identified as a major factor in their adjustment to the disease. It is essential to check the extent of support available to the patient, to recommend additional support as required and to provide information about where this is available. Gender and psychosocial support Guideline: Clinicians and the treatment team need to consider that the psychosocial needs of men and women may vary both in extent and how they are expressed. Successful strategies for meeting psychosocial support needs may therefore differ for men and women. Where the delivery method is inappropriate or insensitive, men may simply not participate or not gain a benefit. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 1.1 Advance and implement a national campaign to reduce the stigma of seeking care and a national strategy for suicide prevention. Recommendation 1.2 Address mental health with the same urgency as physical health. Recommendation 2.3 Align relevant federal programs to improve access and accountability for mental health services. Recommendation 2.� Create a Comprehensive State Mental Health Plan. Recommendation 3.1 Improve access to quality care that is culturally competent. Recommendation 3.2 Improve access to quality care in rural and geographically remote areas. Recommendation �.1 Promote the mental health of young children. Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 200�) Breast cancer care clinicians, such as oncologists and other medical professionals, responsible for the care of women with breast cancer should incorporate planning for psychosocial management as an integral part of treatment. They should routinely assess and address psychosocial distress as a part of total medical care. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 6 Congress should support the Centers for Disease Control and Prevention (CDC), other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans. Screening NCCN Distress Management Clinical Practice Guidelines, (NCCN, 2006) • All patients should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated especially with changes in disease status (i.e., remission, recurrence, progression). • Screening should identify the level and nature of the distress. • Conduct multi-center trials that explore brief screening instruments. . . . TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C ��1 Report Recommendations Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Clinic-based protocols should be developed to ensure that all patients are screened for clinically significant anxiety and depression. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation �.3 Screen for co-occurring mental and substance-use disorders and link with integrated treatment strategies. Improving the Quality of Health Care for Mental and Substance- Use Conditions (IOM, 2006) Recommendation 5-1 To make collaboration and coordination of patients’ mental and substance-use health care services the norm, providers of the services should establish clinically effective linkages within their own organizations and between providers of mental health and substance-use treatment. The necessary communications and interactions should take place with the patient’s knowledge and consent and be fostered by: • Routine sharing of information on patients’ problems and pharmacologic and nonpharmacologic treatments among providers of M/SU treatment. • Valid, age-appropriate screening of patients for comorbid mental, substance-use, and general medical problems in these clinical settings and reliable monitoring of their progress. Patient-Centered Care Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 2.1 Develop an individualized plan of care for every adult with a serious mental illness and child with a serious emotional disturbance. TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Quality Improvement Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation 6: Best available practice guidelines should dictate the standards of care for both physical and psychosocial symptoms. Care systems, payers, and standard-setting and accreditation bodies should strongly encourage their expedited development, validation, and use. Professional societies, particularly the American Society of Clinical Oncology, the Oncology Nursing Society, and the Society for Social Work Oncology, should encourage their members to facilitate the development and testing of guidelines and their eventual implementation, and should provide leadership and training for nonspecialists, who provide most of the care for cancer patients. NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) • Distress should be assessed and managed according to clinical practice guidelines. • Multidisciplinary institutional committees should be formed to implement standards for distress management. • Clinical health outcomes measurement should include assessment of the psychosocial domain (e.g., quality of life and patient and family satisfaction). • Quality of distress management should be included in institutional continuous quality improvement projects. Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 200�) Providers of cancer care should meet the standards of psychosocial care developed by the American College of Surgeon’s Commission on Cancer and follow the National Comprehensive Cancer Center Network’s (NCCN) Clinical Practice Guidelines for the Management of Distress. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation � Quality of survivorship care measures should be developed through public/private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive. Continuity of Care Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 200�) Recommendation 1a Upon discharge from cancer treatment, including treatment of recurrences, every patient should be given a record of all care received and important disease characteristics, this should include, at a minimum: . . . • Psychosocial . . . services provided. • Full contact information on treating institutions and key individual providers. Recommendation 1b Upon discharge from cancer treatment, every patient should receive a follow-up care plan incorporating available evidence–based standards of care. This should include, at a minimum: • Information on possible future need for psychosocial support. • Referrals to specific follow-up care providers, support groups. . . . • A listing of cancer-related resources and information (Internet- based sources and telephone listings for major cancer support organizations). TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre [NBCC] and National Cancer Control Initiative [NCCI], 2003) Clinic-based protocols should be developed to ensure that: • All patients are able to identify a key health professional responsible for continuity of care. • Referral pathways for liaison psychiatry, psychologists, support groups, and relevant allied health professionals are established and known to the team. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 2 Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal providers(s) who coordinated oncology treatment. This service should be reimbursed by third party payors of health care. Such a care plan would summarize critical information needed for the survivor’s long term care, including . . . information on the availability of psychosocial services in the community and on legal protections regarding employment and access to health insurance. TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Improving the Quality of Health Care for Mental and Substance- Use Conditions (IOM, 2006) Recommendation 5-2 To facilitate the delivery of coordinated care by primary care, mental health, and substance-use treatment providers, government agencies, purchasers, health plans, and accreditation organizations should implement policies and incentives to continually increase collaboration among these providers to achieve evidence- based screening and care of their patients with general, mental, and/or substance-use health conditions. The following specific measures should be undertaken to carry out this recommendation: • Primary care and specialty M/SU health care providers should transition along a continuum of evidence-based coordination models from (1) formal agreements among mental, substance-use, and primary health care providers; to (2) case management of mental, substance-use, and primary health care; to (3) collocation of mental, substance-use, and primary health care services; and then to (4) delivery of mental, substance-use, and primary health care through clinically integrated practices of primary and M/SU care providers. Organizations should adopt models to which they can most easily transition from their current structure, that best meet the needs of their patient populations, and that ensure accountability. • DHHS should fund demonstration programs to offer incentives for the transition of multiple primary care and M/SU practices along this continuum of coordination models. • Purchasers should modify policies and practices that preclude paying for evidence-based screening, treatment, and coordination of M/SU care and require (with patients’ knowledge and consent) all health care organizations with which they contract to ensure appropriate sharing of clinical information essential for coordination of care with other providers treating their patients. • Organizations that accredit mental, substance-use, or primary health care organizations should use accrediting practices that assess, for all providers, the use of evidence-based approaches to coordinating mental, substance-use, and primary health care. • Federal and state governments should revise laws, regulations, and administrative practices that create inappropriate barriers to the communication of information between providers of health care for mental and substance-use conditions and between those providers and providers of general care. Recommendation 5-3 To ensure the health of persons for whom they are responsible, M/SU providers should: • Coordinate their services with those of other human-services and education agencies, such as schools, housing and vocational rehabilitation agencies, and providers of services for older adults. • Establish referral arrangements for needed services. TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations Patient Education and Illness Self-Management Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 200�) Recommendation 2 Procedures should be established within diverse patient care settings to better inform patients/survivors and their caregivers about available legal and regulatory protections and resources [e.g., pertaining to employment and insurance.]. Recommendation 5a All survivors should be counseled about common psychosocial effects of cancer and cancer treatment and provided specific referrals to available support groups and services. Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Clinic-based protocols should be developed to ensure the following goals: • Copies of evidence-based information about treatment options are provided to all patients. • Listings of other information resources which may be of value are provided to all patients. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 2.5 Protect and enhance the rights of people with mental illness. Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 200�) The National Cancer Institute (NCI), the American Cancer Society (ACS), and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial Oncology Society, American Society of Social Work, American Society for Therapeutic Radiology and Oncology, Oncology Nursing Society) need to partner with advocacy groups (e.g., National Breast Cancer Coalition, National Alliance of Breast Cancer Organizations, Wellness Community, National Coalition Cancer Survivorship [NCCS]) to focus attention on psychosocial needs of patients and resources that provide psychosocial services in local communities and nationally. TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Public Education Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 200�) Recommendation �a National public education efforts sponsored by coalitions of public and private cancer information and professional organizations and the media (e.g., film, television, print, and broadcast news) should be undertaken to: • Raise awareness of survivor experiences and capabilities, and of the continuing growth of the cancer survivor population. These efforts should seek to enhance understanding of the post-treatment experiences of cancer survivors of various ages and their loved ones and the need for life-long follow-up care. Recommendation 5c Providers should include psychosocial services routinely as part of comprehensive cancer care treatment and follow-up care and should be knowledgeable about local resources for such care for patients/survivors, caregivers, and family members. In particular: • The transition from active treatment to social reintegration is crucial and should receive specific attention in survivor’s care. • Primary and other health care providers should monitor caregivers, children, and siblings of survivors for signs of psychological distress both during the survivor’s treatment and in the post-treatment period. Care Coordination NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) Licensed mental health professionals and certified pastoral caregivers experienced in psychosocial aspects of cancer should be readily available as staff members or by referral. Reimbursement Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 200�) Recommendation 7b Adequate reimbursement for prosthetics must be provided and it must be recognized that: • Many prostheses must be replaced periodically. • Access to prostheses is an integral part of psychosocial care for cancer. Recommendation 7c [Health Insurance] Coverage should be routinely provided for psychosocial services for which there is evidence of benefit both during treatment and post-treatment as needed. NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) Medical care contracts should include reimbursement for services provided by mental health professionals. TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 2 Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal providers(s) who coordinated oncology treatment. This service should be reimbursed by third party payors of health care. Recommendation 9 Federal and state policy makers should act to ensure that all cancer survivors have access to adequate and affordable health insurance. Insurers and payors of health care should recognize survivorship care as an essential part of cancer care and design benefits, payment policies, and reimbursement mechanisms to facilitate coverage for evidence-based aspects of care. Support of Informal Caregivers Living Beyond Cancer: Finding a New Balance (President’s Cancer Panel, 200�) Recommendation 5b A caregiver plan should be developed and reviewed with a survivor’s caregiver(s) at the outset of cancer treatment. It should include, at a minimum: • An assessment of the survivors’ social and support systems. • A description of elements of patient care for which the caregiver will be responsible. Caregivers should be provided adequate and, as needed, ongoing hands-on training to perform these tasks. • Telephone contacts and written information related to caregiver tasks. • Referral to caregiver support groups or organizations either in the caregiver’s local area or to national and online support services. Recommendation 8a Qualified providers in the treatment setting should train and assist parents to assume their crucial roles in helping the child with cancer return to school and becoming an educator and advocate with individual teachers and the school system. Recommendation 8b Pediatric cancer centers should offer and promote teacher training as a part of their community outreach efforts to help ensure that the needs of pediatric cancer survivors returning to the classroom are met. Internet-based training modules also should be considered to extend the geographic reach of these training efforts. If possible, continuing education units (CEUs) should be provided to participating teachers. Recommendation 8c NCI and the Dept. of Education should explore collaborative opportunities to improve the classroom re-entry and re- integration of young people with cancer or other chronic or catastrophic illnesses (e.g., remote learning, teacher training). Recommendation 9b As part of the process of transitioning survivors of childhood cancers into the adult care setting, information about young adult support groups, Internet sites, and other sources of information and support specific to this age group should be provided to survivors and their families. Recommendation 10 Cancer care providers should inform families of cancer patients about supportive services, including special camps for families and siblings. TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Recommendation 12a Family members, primary care providers, cancer specialists, and others who are close to or provide medical care to adolescent and young adult survivors should be made aware that depression, anxiety, or other psychosocial issues may affect the survivor long after treatment ends and should be instructed on how to intervene should the survivor experience such difficulties. Recommendation 12b Adolescent and young adult survivors should be taught self-advocacy skills that may be needed to secure accommodations for learning differences resulting from cancer or its treatment. Physicians and other providers should act as advocates for survivors when necessary. Recommendation 16 Health care providers must ascertain the strength of an older survivor’s social and caregiver support system. This should be assessed at diagnosis, during treatment, and at intervals after treatment is completed. Oncology nurses, nurse practitioners, other advanced practice nurses, physician assistants, social workers, patient navigators, or other non-physician personnel may be best able to make these assessments and arrange assistance and services for survivors who lack adequate support. Recommendation 17 Health care providers should not assume that older cancer survivors and their partners are uninterested in sexuality and intimacy. Survivors should be asked directly if they have concerns or are experiencing problems in this area and should receive appropriate referrals to address such issues. Employment From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 8 Employers, legal advocates, health care providers, sponsors of support services, and government agencies should act to eliminate discrimination and minimize adverse effects of cancer on employment, while supporting cancer survivors with short-term and long term limitations in ability to work. The following text follows the recommendation: • Cancer professionals, advocacy organizations, and the NCI and other government agencies should continue to educate employers and the public about the successes achieved in cancer treatment, the improved prospects for survival, and the continued productivity of most patients who are treated for cancer. • Public and private sponsors of services to support cancer survivors and their families should finance programs offering education, counseling, support, legal advice, vocational rehabilitation, and referral for survivors who want to work. TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations • Providers who care for cancer survivors should become familiar with the employment rights that apply to survivors who want to work and make available information about employment rights and programs that provide counseling, legal services, and referral. • Providers should routinely ask patients who are cancer survivors if they have physical or mental health problems that are affecting their work, with the goal of improving symptoms and referring patients for rehabilitative and other services. • Employers should implement programs to assist cancer survivors. Examples include short- and long-term disability insurance, return to work programs, wellness programs, accommodation of special needs, and employee assistance programs. • Cancer survivors should tell their physicians when health problems are affecting them at work. Survivors should educate themselves about their employment rights and contact support organizations for assistance and referrals when needed. Workforce Education NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) Educational and training programs should be developed to ensure that health care professionals and pastoral caregivers have knowledge and skills in the assessment and management of distress. Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (National Breast Cancer Centre and National Cancer Control Initiative, 2003) Clinic-based protocols should be developed to ensure that all staff working with patients with cancer have participated in relevant communication skills training. Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 200�) • Sponsors of professional education and training programs (e.g., NCI, ACS, American Society of Clinical Oncology [ASCO], Oncology Nursing Society, Association of Oncology Social Work, American Cancer Society-Commission on Cancer, American Psychosocial Society) should support continuing education programs by designing, recommending, or funding them at a level that recognizes their importance in psycho-oncology for oncologists, those in training programs, and nurses and for further development of programs similar to the ASCO program to improve clinician’s communication skills; and TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��0 CANCER CARE FOR THE WHOLE PATIENT Report Recommendations • Graduate education programs for oncology clinicians, primary care practitioners, nurses, social workers, and psychologists should evaluate their capacity to incorporate a core curriculum in psycho- oncology in their overall curriculum taught by an adequately trained faculty in psycho-oncology and to include relevant questions in examination requirements. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 7 The National Cancer Institute (NCI), professional associations, and voluntary organizations should expand and coordinate their efforts to provide educational opportunities to health care providers to equip them to address the health care and quality of life issues facing cancer survivors. (The text below follows the recommendation): Immediate steps to facilitate the development of programs include: • Establish a clearinghouse of available sources of survivorship education and training (and guidelines), with opportunity for feedback. • Appoint an interdisciplinary consortium to review available resources, identify promising approaches, develop new programs, and promote cost-effective approaches. • Increase support of model formal training programs (undergraduate and graduate levels, continuing medical education) that could be adopted by others. By specialty: Physicians 1. Add more survivorship-related CME: • The American Board of Medical Specialties’ new program, “Maintenance of Certification,” will require continuous assurance of professional skills for board-certified physicians. The development of a model on cancer survivorship as part of this program could facilitate the assurance of competence for these and other specialty providers. 2. Improve online survivorship information aimed at health care providers: • Expand physician data query to include more information on survivorship care. • Centralize survivorship guidelines online. • Encourage the development and adoption of evidence-based guidelines. • Ease finding survivorship-related guidelines included in the AHRQ- sponsored guideline clearinghouse (e.g., add the term survivorship to the search engine to pick up surveillance guidelines for cancer). 3. Expand training opportunities to promote interdisciplinary shared care. TABLE C-1 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C ��1 Report Recommendations Nurses 1. Increase survivorship content in undergraduate and graduate nursing programs. 2. Expand continuing education opportunities on survivorship for practicing nurses. 3. Increase the number of nursing schools that provide graduate training in oncology. 4. Increase the number of nurses who seek certification in oncology (incentives are needed). 5. Endorse activities of those working to ease the nursing shortage. Social workers and other providers of psychosocial services 1. Support efforts of APOS to standardize and promote continuing education. 2. Endorse activities of those working to maintain social services in cancer programs. Research and Demonstrations NCCN Distress Management Clinical Practice Guidelines (NCCN, 2006) Conduct multicenter trials that . . . pilot treatment guidelines. Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 200�) 1. Research sponsors (e.g., NCI, ACS) and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial Oncology Society, American Society of Social Work, American Society for Therapeutic Radiology and Oncology, Oncology Nursing Society) need to support efforts in collaboration with advocacy groups (e.g., National Breast Cancer Coalition, National Alliance of Breast Cancer Organizations) to enhance practice environments to promote coordinated, comprehensive, and compassionate care. 2. Research sponsors (e.g., NCI, ACS) should continue to support basic and applied psycho-oncology research. This might include: • Further development of simple, rapid screening tools for identifying the patient with distress in outpatient offices and training of primary oncology teams in diagnosis of distress that exceeds the “expected” and when referral to supportive services should be made; • Studies that assess the relative effectiveness of various psychosocial interventions, using population-based patient samples of adequate size, the timing and duration of intervention, and innovative and inexpensive modes of administration (e.g., Internet-based approaches); • A consensus conference to develop a battery of standard instruments for outcome measures to permit comparison of data from studies carried out by different research groups; TABLE C-1 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html ��2 CANCER CARE FOR THE WHOLE PATIENT TABLE C-1 Continued Report Recommendations • Organization of a psychosocial clinical trials group in which a network of researchers could address key questions in multi-center studies that would allow access to large, population-based samples; • Clinical trials of psychosocial interventions that are conducted within routine breast cancer care in which cost and quality of life are outcome measures; and • A registry of ongoing psychosocial research/trials to assist researchers in identifying and tracking new areas of study. 3. The NCI should support a special study to ascertain the use of, and unmet need for, cancer-related supportive care services (including psychosocial services) in the United States. The results of such a study could provide benchmarks against which care can be measured and performance monitored. Such a study would document existing disparities in service use by age, race/ethnicity, geography, and insurance coverage. Evidence Report on the Occurrence, Assessment, and Treatment of Depression in Cancer Patients (Pirl, 200�) More research is needed on factors that may cause varying rates of depression and that predict which patients are most at risk. Longitudinal studies are needed to estimate the incidence of depression starting at the time of or, ideally, before diagnosis of cancer. Many instruments with a wide range of complexity are currently being used to measure depressive symptoms. . . . Multiple methods of assessment make it difficult to compare studies. A consensus choice of instruments may help to standardize research on depression that is comorbid with cancer. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 5 The Centers for Medicare and Medicaid Services (CMS), National Cancer Institute (NCI), Agency for Healthcare Research and Quality (AHRQ), the Department of Veterans Affairs (VA), and other qualified organizations should support demonstration programs to test models of coordinated, interdisciplinary survivorship care in diverse communities and across systems of care. Recommendation 10 The NCI, CDC, AHRQ, CMS, VA, private voluntary organizations such as the American Cancer Society, and private health insurers and plans should increase their support of survivorship research and expand mechanisms for its conduct. New research initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care. Research is especially needed to improve understanding of . . . • The cost-effectiveness of alternative models of survivorship care and community-based psychosocial services including: – Survivors’ and caregivers’ attitudes and preferences regarding outcomes and survivorship care; – Needs of racial, ethnic groups, residents of rural areas, and other potentially underserved groups; and – Supportive and rehabilitation programs. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� TABLE C-1 Continued Report Recommendations • Interventions to improve the quality of life, including: – Family and caregiver needs and access to supportive services. – Mechanisms to reduce financial burdens of survivorship care (e.g., the new Medicare prescription drug benefit should be carefully monitored to evaluate its impact, especially how private plan formularies cover cancer drugs). – Employer programs to meet return-to-work needs. – Approaches to improve health insurance coverage. – Legal protections afforded cancer survivors through the Americans with Disabilities Act (ADA), Family and Medical Leave Act, Health Insurance Portability and Accountability Act (HIPAA), and other laws. • Survivorship research methods including barriers to participation, impact of HIPAA, and methods to overcome challenges of survivorship research (e.g., methods to adjust for bias introduced by nonparticipation; methods to minimize loss-to follow-up). Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT TABLE C-2 Other Recommendations of Potential Relevance Report Recommendations Access Ensuring Quality Cancer Care (IOM, 1999) Recommendation 9 Services for the un- and underinsured should be enhanced to ensure entry to, and equitable treatment within, the cancer care system. Recommendation 10 Studies are needed to find out why specific segments of the population (e.g., members of certain racial or ethnic groups, older patients) do not receive appropriate cancer care. These studies should measure provider and individual knowledge, attitudes, and beliefs, as well as other potential barriers to access to care. Data Systems Ensuring Quality Cancer Care (IOM, 1999) Recommendation 7 A cancer data system is needed that can provide quality benchmarks for use by systems of care (such as hospitals, provider groups, and managed care systems). Enhancing Data Systems to Improve the Quality of Cancer Care (IOM and NRC, 2000) Recommendation 2 Congress should increase support to CDC for the National Program of Cancer Registries (NPCR) to improve the capacity of states to achieve complete coverage and timely reporting of incident cancer cases. NPCR’s primary purpose is cancer surveillance, but NPCR, together with SEER, has great potential to facilitate national, population-based assessments of the quality of cancer care through linkage studies and by serving as a sample frame for special studies. Recommendation 3 Private cancer-related organizations should join the American Cancer society and the American College of Surgeons to provide financial support for the National Cancer Data Base. Expanded support would facilitate efforts underway to report quality benchmarks and performance data to institutions providing cancer care. Recommendation � Federal research agencies (e.g., NCI, CDC, AHRQ, Health Care Financing Administration) should support research and demonstration projects to identify new mechanisms to organize and finance the collection of data from cancer care quality studies. Current data systems tend to be hospital based, while cancer care is shifting to outpatient settings. New models are needed to capture entire episodes of care, irrespective of the setting of care. Recommendation 5 Federal research agencies (e.g., National Institutes of Health, Food and Drug Administration, CDC, VA) should support public private partnerships to develop technologies, including computer-based patient record systems and intranet-based communication systems, that will improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations Recommendation 7 Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for health services research, especially studies based on the linkage of cancer registry to administrative data and special studies of cases sampled from cancer registries. Resources should also be made available through NPCR and SEER to provide technical assistance to states to help them expand the capability of using cancer registry data for quality improvement initiatives. NPCR should also be supported in its efforts to consolidate state data and link them to national data files. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 6.1 Use health technology and telehealth to improve access and coordination of mental health care, especially for Americans in remote areas or in underserved populations. Recommendation 6.2 Develop and implement integrated electronic health record and personal health information systems. Quality Improvement Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003) Recommendation 1 Develop evidence-based clinical practice guidelines for the care of survivors of childhood cancer. The NCI should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, AHRQ Evidence Based Practice Centers should be charged to review the evidence. When evidence upon which to make recommendations is not available, the expert group should identify areas in need of research. Recommendation 2 Define a minimum set of standards for systems of comprehensive, multidisciplinary follow-up care that link specialty and primary care providers, ensure the presence of such a system within institutions treating children with cancer, and evaluate alternative models of delivery of survivorship care. • The NCI should convene an expert group of consumers, providers, and health services researchers to define essential components of a follow-up system and propose alternative ways to deliver care. Consideration could be given to long-term follow-up clinics, collaborative practices between oncology and primary care physicians, and other models that might be dictated by local practices and resources, patient and family preferences, geography, and other considerations. Any system that is developed should assure linkages between specialty and primary care providers. TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations • A set of minimal standards for designation as a late effects clinic should be endorsed and adopted by relevant bodies such as Children’s Oncology Group (COG), the American Society of Pediatric Hematology/Oncology, the American Academy of Pediatrics, the American Society of Clinical Oncology, the American College of Surgeon’s Commission on Cancer, and the NCI in its requirements for approval for comprehensive cancer centers. • COG members and other institutions treating children with cancer should ensure that a comprehensive, multidisciplinary system of follow-up care is in place to serve the needs of patients and their families discharged from their care. • State comprehensive cancer control plans being developed and implemented with CDC support should include provisions to ensure appropriate follow-up care for cancer survivors and their families. • Grant programs of HRSA (e.g., Special Projects of Regional and National Significance [SPRANS]) should support demonstration programs to test alternative delivery systems (e.g., telemedicine, outreach programs) to ensure that the needs of different populations are met (e.g., rural residents or those living far from specialized late-effects clinics, ethnic and minority groups). Needed also are evaluations to determine which models of care confer benefits in terms of preventing or ameliorating late effects and improving quality of life, and which models survivors and their families prefer. Recommendation 3 Improve awareness of late effects and their implications to long-term health among childhood cancer survivors and their families. • Clinicians providing pediatric cancer care should provide survivors and their families written information regarding the specific nature of their cancer and its treatment, the risks of late effects, and a plan (and, when appropriate, referrals) for follow-up. Discussions of late effects should begin with diagnosis. • Public and private sponsors of health education (e.g., NCI, ACS) should launch informational campaigns and provide support to survivorship groups that have effective outreach programs. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.2 Advance evidence-based practices using dissemination and demonstration projects and create a public-private partnership to guide their implementation. TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations Quality Measurement Ensuring Quality Cancer Care (IOM, 1999) Recommendation 3 Measure and monitor the quality of care using a core set of quality measures. Measures should: • span the continuum of cancer care and be developed through a coordinated public-private effort; • be used to hold providers, including health care systems, health plans, and physicians accountable for providing and improving quality care; • be applied to care provided through the Medicare and Medicaid programs as a requirement of participation in these programs; and • be disseminated widely and communicated to purchasers, providers, consumer organizations, individuals with care, policy makers, and health services researchers, in a form that is relevant and useful for health care decision-making. Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000) Recommendation 1 Develop a core set of cancer care quality measures. a. The secretary of DHHS should designate a committee made up of representatives of public institutions (e.g., The DHHS Quality of Cancer Care Committee, state cancer registries, academic institutions) and private groups (e.g., consumer organizations, professional associations, purchasers, health insurers and plans) to: 1) identify a single set of quality measures that span the full spectrum of an individual’s care and are based on the best available evidence; 2) advise other national groups (e.g., National Committee for Quality Insurance, Joint Commission on Accreditation of Healthcare Organizations, National Quality Forum) to adopt the recommended core set of measures. . . . b. Research sponsors (e.g., AHRQ, NCI, HCFA, VA) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care. . . . d. Efforts to identify quality of cancer care measures should be coordinated with ongoing national efforts regarding quality of care. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation � Quality of survivorship care measures should be developed through public/private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive. TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Childhood Cancer Survivorship (IOM, 2003) Recommendation 1 Develop evidence-based clinical practice guidelines for the care of survivors of childhood cancer. The NCI should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, AHRQ Evidence Practice Centers should be charged to review the evidence. When evidence upon which to make recommendation is not available, the expert group should identify areas in need of research. Research and Demonstrations Ensuring Quality Cancer Care (IOM, 1999) Recommendation 8 Public and private sponsors of cancer care research should support national studies of recently diagnosed individuals with cancer, using information sources with sufficient detail to assess patterns of cancer care and factors associated with the receipt of good care. . . . Recommendation 10 Studies are needed to find out why specific segments of the population (e.g., members of certain racial or ethnic groups, older patients) do not receive appropriate cancer care. These studies should measure provider and individual knowledge, attitudes, and beliefs, as well as other potential barriers to access to care. Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000) Recommendation 1 b. Research sponsors (e.g., AHRQ, NCI, HCFA,VA) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care. Recommendation 9 Federal research agencies (e.g., NCI, AHRQ, HCFA, VA) should fund demonstration projects to assess the application of quality monitoring programs within health care systems and the impact of data-driven changes in the delivery of services on the quality of health care. Findings from the demonstrations should be disseminated widely to consumers, payers, purchasers, and cancer care providers. TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �� Report Recommendations Bridging Disciplines in the Brain, Behavioral, and Clinical Sciences (IOM, 2000) Recommendation 1 Federal and private research sponsors should seek to identify areas that can be most effectively investigated with interdisciplinary approaches. Recommendation 2 Funding agencies and universities should remove the barriers to interdisciplinary research and training . . . by • Requiring commitments from university administration to qualify for funding for interdisciplinary efforts. These should include supportive promotion policies, allocation of appropriate overhead, and allocation of shared facilities. • Facilitate interactions among investigators in different disciplines by funding shared and core facilities. • Encouraging legislation to expand loan repayment programs to include investigators outside NIH who are engaged in funded interdisciplinary and translational research. • Supporting peer review that facilitates interdisciplinary efforts. • Continuing and expanding partnerships among funding agencies to provide the broadest base for interdisciplinary efforts. • Indicating in funding announcements that training is an integral component on the interdisciplinary research project. Universities should: • Allocate appropriate credit for interdisciplinary efforts . . . including fair allocation of research overhead costs to the home departments of all investigators and a fair credit for faculty contributions. • Review and revise appointment, promotion, and tenure policies to ensure that they do not impede interdisciplinary research and teaching. • Facilitate interaction among investigators through support for shared facilities. • Encourage development, maintenance, and evolution of interdisciplinary institutes, centers, and programs for appropriate problems. Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation 2 The NCI should add the requirement of research in palliative care and symptom control for recognition as a “comprehensive cancer center.” The Health Care Financing Administration should fund demonstration projects for service delivery and reimbursement that integrate palliative care and potentially life-prolonging treatments throughout the course of disease. TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �00 CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Childhood Cancer Survivorship (IOM, 2003) Recommendation 7 Public and private research organizations (e.g., NCI, National Institute of Nursing Research, ACS) should increase support for research to prevent or ameliorate the long- term consequences of childhood cancer. Priority areas of research include assessing the prevalence and etiology of late effects; testing methods that may reduce late effects during treatment; developing interventions to prevent or reduce late effects after treatment; and furthering improvements in quality of care to ameliorate the consequences of late effects on individuals and families. • Research is needed on the long-term social, economic, and quality of life implications of cancer on survivors and their families. . . . Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.1 Accelerate research to promote recovery and resilience, and ultimately to cure and prevent mental illness. TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �01 Report Recommendations Workforce Education and Training Bridging Disciplines in the Brain, Behavioral, and Clinical Sciences (IOM, 2000) Recommendation 3 Scientific education at early career stages should be sufficiently broad to produce graduates who can understand essential components of other disciplines while receiving a solid grounding in one or more fields. Criteria for NIH-supported research training should include both breadth and depth of education. Funding mechanisms to support interdisciplinary training in appropriate fields should provide additional incentives to the universities and the trainees along the following lines: • Through the NIH Medical Scientist Training Program, encourage participating universities to support MD/PhD programs in the social and behavioral, as well as biomedical, sciences. Although existing program language permits such graduate study, training in social and behavioral sciences (e.g., anthropology, economics, psychology, and sociology) is undertaken infrequently. NIH can highlight the need for such graduates and encourage grantees to recruit them. • Promote translational research, an important aspect of interdisciplinary training by (1) providing clinical experience in PhD programs. This can range from support for single courses that expose students to human pathophysiology to training programs that require both basic research and clinical experience. (2) Supporting PhD programs and postdoctoral mentored career development awards for physicians, nurses, dentists, social workers, and other clinicians. • Create partnerships with the private sector to develop and support interdisciplinary training. Many of today’s students will enter private industry to do translational research. Others will go on to careers in teaching, publishing, science policy, science administration, or law. Interdisciplinary perspectives are as important to success in these careers as they are in research. • Expand the T32 training grant awards to cover the full direct costs of implementation. This change will provide the resources necessary to support the greater expenses encountered in an interdisciplinary training program. Recommendation � Funding agencies should establish a grant supplement program to foster interdisciplinary training and research. This would be administratively modeled after the supplements that exist for minorities, people with disabilities, and for people reentering research after a hiatus. Investigators with research grants who have interdisciplinary training opportunities should be able to obtain supplemental funds for qualified candidates through a relatively short application with expedited review. Successful pilot efforts will provide data to support further applications for career development and research. TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �02 CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Recommendation 5 Funding opportunities for interdisciplinary training should be provided for scientists at all stages of their careers. • Implement career development programs that encourage junior faculty to engage in interdisciplinary research. Junior faculty need to be successful in the early phases of their research, so they are less likely than senior faculty to pursue interdisciplinary research. • Support midcareer investigators in developing expertise needed for interdisciplinary research. These programs should include sabbaticals, career development awards, and university- based, formal courses for faculty development to enhance interdisciplinary and/or translational research. • Continue funding for workshops, symposia, and meetings to bring together diverse fields to focus on a particular scientific question. In such an environment, cross training of the investigators and encouragement of collaboration would develop naturally. • Support consortia and multi-institutional programs that provide integration of research efforts from multiple disciplines. Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003) Recommendation � Improve professional education and training regarding the late effects of childhood cancer and their management for both specialty and primary care providers. • Professional societies should act to improve primary care providers’ awareness through professional journals, meetings, and continuing education opportunities. • Primary care training programs should include information about the late effects of cancer in their curriculum. • The NCI should provide easy-to-find information on late effects of childhood cancer on its website (e.g., through the Physician Data Query [PDQ]), which provides up-to-date information on cancer prevention, treatment, and supportive care. • Oncology training programs should organize coursework, clinical practicums, and continuing education programs on late effects of cancer treatment for nurses, social workers, and other providers. • Oncology professional organizations should, if they have not already, organize committees or subcommittees dedicated to issues related to late effects. • Oncology Board examinations should include questions related to late effects of cancer treatment. • Interdisciplinary professional meetings that focus on the management of late effects should be supported to raise awareness of late effects among providers who may encounter childhood cancer survivors in their practices (cardiologists, neurologists, fertility specialists, psychologists). TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �0� Report Recommendations Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.3 Improve and expand the workforce providing evidence-based mental health services and supports. Palliative Care Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation 1 The NCI should designate certain cancer centers, as well as some community cancer centers, as centers of excellence in symptom control and palliative care for both adults and children. The centers will deliver the best available care, as well as carrying out research, training, and treatment aimed at developing portable model programs that can be adopted by other cancer centers and hospitals. Activities should include but not be limited to the following: • formal testing and evaluation of new and existing practice guidelines for palliative and end-of-life care; • pilot testing “quality indicators” for assessing end-of-life care at the level of the patient and the institution; • incorporating the best palliative care into NCI-sponsored clinical trials; • innovating in the delivery of palliative and end-of-life care, including collaboration with local hospice organizations; • disseminating information about how to improve end-of-life care to other cancer centers and hospitals through a variety of media; • uncovering the determinants of disparities in access to care by minority populations that should be served by the center, and developing specific programs and initiatives to increase access; these might include educational activities for health care providers and the community, setting up outreach programs, etc.; . . . • providing in-service training for local hospice staff in new palliative care techniques. Recommendation 5 Organizations that provide information about cancer treatment (NCI, the American Cancer Society, and other patient-oriented organizations [e.g., disease-specific groups], health insurers, and pharmaceutical companies) should revise their inventories of patient-oriented material, as appropriate, to provide comprehensive, accurate information about palliative care throughout the course of disease. Patients would also be helped by having reliable information on survival by type and stage of cancer easily accessible. Attention should be paid to cultural relevance and special populations (e.g., children). TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Reimbursement Improving Palliative Care for Cancer (IOM and NRC, 2001) Recommendation � Private insurers should provide adequate compensation for end-of-life care. The special circumstances of dying children—particularly the need for extended communication with children and parents, as well as health care team conferences— should be taken into account in setting reimbursement levels and in actually paying claims for these services when providers bill for them. Research Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 5.� Develop the knowledge base in four understudied areas: mental health disparities, long-term effect of medications, trauma, and acute care. Public Health From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) Recommendation 6 Congress should support the CDC, other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans. Other Crossing the Quality Chasm (IOM and NRC, 2001) Recommendation 1 All health care organizations, professional groups, and private and public purchasers should adopt as their explicit purpose to continually reduce the burden of illness, injury, and disability, and to improve the health and functioning of the people of the United States. Recommendation 2 All health care organizations, professional groups, and private and public purchasers should pursue six major aims; specifically, health care should be safe, effective, patient- centered, timely, efficient, and equitable. TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C 405 Report Recommendations Recommendation 4 Private and public purchasers, health care organizations, clinicians, and patients should work together to redesign health care processes in accordance with the following rules: 1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face- to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits. 2. Customization based on patient needs and values. The system of care should be designed to meet the most common type of needs, but have the capability to respond to individual patient choices and preferences. 3. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making. 4. Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information. 5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place. 6. Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors. 7. The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system’s performance on safety, evidence-based practice, and patient satisfaction. 8. Anticipation of needs. The health system should anticipate patient needs rather than simply reacting to events. 9. Continuous decrease in waste. The health system should not waste resources or patient time. 10. Cooperation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care. Recommendation 11 The Health Care Financing Administration and the Agency for Healthcare Research and Quality, with input from private payers, health care organizations, and clinicians, should develop a research agenda to identify, pilot test, and evaluate various options for better aligning current payment methods with quality improvement goals. TABLE C-2 Continued continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� CANCER CARE FOR THE WHOLE PATIENT Report Recommendations Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003) Recommendation 5 HRSA’s Maternal and Child Health Bureau and its partners should be fully supported in implementing the Healthy People 2010 goals for Children with Special Health Care Needs. These efforts include a national communication strategy, efforts at capacity building, setting standards, and establishing accountability. Meeting these goals will benefit survivors of childhood cancer and other children with special health care needs. Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003) Recommendation 2.2 Involve consumers and families fully in orienting the mental health systems toward recovery. Recommendation �.2 Improve and expand school mental health programs. REFERENCES IOM (Institute of Medicine). 1999. Ensuring quality cancer care. Edited by M. Hewitt and J. V. Simone. Washington, DC: National Academy Press. IOM. 2000. Bridging disciplines in the brain, beha�ioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. IOM. 2006. Impro�ing the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2000. Enhancing data systems to impro�e the quality of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Interpreting the �olume-outcome relationship in the context of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Impro�ing palliati�e care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. IOM and NRC. 2003. Childhood cancer sur�i�orship. Impro�ing care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. C. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer sur�i�or: Lost in transition. Edited by M. Hewitt, S. Greenfield, and E. Stovall. Washington, DC: The National Academies Press. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical prac- tice guidelines for the psychosocial care of adults with cancer. http://www.nhmrc.gov. au/publications/synopses/_files/cp90 . TABLE C-2 Continued Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html APPENDIX C �0� NCCN (National Comprehensive Cancer Network). 2006. Distress management—�ersion 1.200�. http://www.nccn.org/professionals/physician_gls/PDF/distress (accessed Sep- tember 14, 2007). New Freedom Commission on Mental Health. 2003. Achie�ing the promise: Transforming mental health care in America. Final Report. DHHS Publication No. SMA-03-3832. Rockville, MD: Department of Health and Human Services. Pirl, W. F. 2004. Evidence report on the occurrence, assessment, and treatment of depression in cancer patients. Journal of the National Cancer Institute Monographs 32:32–39. President’s Cancer Panel. 2004. Li�ing beyond cancer: Finding a new balance. President’s Can- cer Panel 2003–2004 annual report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services. Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �0� Index A Academic Chronic Care Collaborative, 202, 319, 365 Academy of Certified Social Workers, 302 Academy of Psychosomatic Medicine, 313 Accreditation, 14, 18, 268, 270, 277, 278, 283, 284, 289, 290, 291, 293, 297, 298, 301-302, 303, 304-305, 307, 308, 309, 311-312, 320, 321-322, 341, 374, 382, 384, 397 Accreditation Council for Graduate Medical Education (ACGME), 245, 294, 311, 313 Outcome Project, 293 Activities of daily living (ADLs) assessment instruments, 172 n.12, 174, 336 n.1 defined, 29 family and informal supports, 260-261, 262-263 fatigue and 28, 29, 104 limitations in performing, 3, 23, 26, 28, 29, 82, 359, 364 personal care services, 10, 82, 104, 230, 236, 262-263, 364 policies supporting service availability, 260-263 provider workforce, 285 Adenocarcinoma, 30 n.7 Adherence to treatment regimens. See also Illness self-management case management and, 192-193 coordination of care and, 259 emotional distress and mental illness and, 3, 5, 37, 51, 52, 55, 57, 59, 60, 63 n.7, 204 material and logistical resources and, 34, 103 as outcome measure, 238, 364 psychological distress from nonadherence, 59, 63, 69 rates of nonadherence, 58, 68 Adjustment disorder, 3 n.2, 30, 56, 67, 95, 167, 332 Adjuvant therapy, 58, 92, 162, 196 Administration on Aging, 96 n.5, 137, 249, 263, 365 Adolescent cancer patients developmental problems, 32-33 psychopharmacological services, 95 remote services, 229 Adult survivors of childhood cancer chronic illness, 27 cognitive impairment, 27-28 employment problems, 36 functional limitations, 2, 29 information resources, 110 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �10 INDEX psychological distress, 167 quality of care and quality of life, 2, 6, 42, 361, 372, 395-396, 402-403, 406 research recommendations, 398, 400 screening for psychosocial health needs, 167 smoking cessation, 99 Advance care planning, 157, 173 Advocacy. See Patient advocates and advocacy organizations Aetna, 250 Affinity Health System, 243 Age of patients and caregivers, and need for services, 25-26 Agency for Healthcare Research and Quality (AHRQ), 12, 13, 15, 18, 28, 29, 85, 195, 196, 198, 219, 239, 242, 270, 277, 321, 329-330, 340, 341, 371, 390, 392, 394, 395, 397, 398, 405 CAHPS, 16, 17, 243, 245, 248, 271, 272, 278, 339 Questions Are the Answer Campaign, 243, 245 Alcoholics Anonymous, 89 Alliance for the Mentally Ill of Greater Kansas City, 226 Alzheimer’s disease, 107 AMC Cancer Research Center, 127 America’s Health Insurance Plans, 17, 257, 340 American Academy of Family Physicians, 285 American Academy of Orthopedic Surgeons, 243 American Academy of Pediatrics, 285 American Association of Colleges of Nursing, 297, 298, 299 American Association of Pastoral Counselors, 309 American Board of Family Medicine (ABFM), 294 Maintenance of Certification Program for Family Physicians, 296 American Board of Internal Medicine (ABIM), 293-294 Practice Improvement Module, 296 American Board of Medical Specialties, 268, 284-285, 295, 296 Maintenance of Certification initiative, 243, 245, 248 American Board of Pediatrics (ABP), 294, 295 American Board of Professional Psychology, 305 American Board of Psychiatry and Neurology, 295, 296 American Cancer Society (ACS), 4, 34, 89, 103, 108, 190, 194-195, 229, 230, 233, 267, 273, 303, 365, 385, 389, 391, 392, 394, 396, 400, 403 Cancer Reference Information, 109 Cancer Survivors Network, 125 Hope Lodge, 135 I Can Cope Program, 119 Look Good . . . Feel Better Program®, 112, 119, 129 Man-to-Man Program, 125 Navigator program, 223, 247 Reach to Recovery program, 88, 118, 126 Road to Recovery, 39, 136 American College of Physicians, 285 American College of Surgeons, 372, 385, 391, 394 Commission on Cancer, 13, 17, 200, 270, 277, 340, 365 American Institute of Cancer Research, 109, 119 American Medical Association, 250 n.5, 289 American Nurses Association, 300 American Nurses Credentialing Center, 300 American Psychiatric Association, 30, 285, 355, 356, 365 American Psychological Association, 251, 252, 286, 304, 306, 313, 355, 360, 365 American Psychosocial Oncology Society (APOS), 13, 17, 118, 206, 266, 277, 318, 340, 355, 365, 385, 389, 391 American Society of Clinical Oncology (ASCO), 6, 13, 17, 34, 165-166, 239, 277, 285, 340, 365, 382, 385, 389, 391, 396 People Living With Cancer, 115, 228 Quality Oncology Practice Initiative, 271 American Society of Pediatric Hematology/ Oncology, 285 Americans with Disabilities Act, 10, 104, 107, 264, 364, 393 Anthracycline chemotherapy, 102 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �11 Antidepressants, 94, 95, 271 Anxiety disorders, 3, 4, 7, 30-31, 38, 54, 56, 57, 58-59, 61, 68, 81, 88, 91, 92, 94, 95, 156, 163, 167, 168, 170, 179, 203, 251, 300, 315, 332-333, 357, 364, 381, 388 Anxiolytics, 94, 95 Appearance-related resources. See also Prostheses and wigs information resources, 112, 116 AQA Alliance, 271 Arthritis, 4 n.3, 33 n.9, 37, 52, 55 n.3, 56, 65, 86, 96, 196, 336, 358 Asian and Pacific Islander National Cancer Survivors Network, 109 Ask Me �™ initiative, 243, 245 Assessment. See Needs assessment Association of American Medical Colleges, 202, 288, 289 Academic Chronic Care Collaborative, 319 Curriculum Management and Information Tool, 291 Medical School Objectives Project, 290 Association of Cancer Online Resources, 109, 126, 365 Association of Community Cancer Centers, 354 Association of Oncology Social Work (AOSW), 34, 37, 38, 39, 286, 303, 365, 389 Association of Pediatric Oncology Social Workers, 286, 303 Association of Psychology Postdoctoral and Internship Centers, 306 Association of Social Work Boards, 302 Association of State and Provincial Psychology Boards, 305 Asthma, 33 n.9, 37, 52, 56, 86, 196, 202, 233, 251, 258, 272, 319, 330, 336 Attention-deficit disorder, 105 B Beck Depression Inventory-Short Form, 167, 177 Behavioral change interventions. See also Cognitive-behavioral therapy availability, 262-263 diet and physical activity, 100-102 effectiveness, 7, 98-102 needs and services, 10, 83, 106, 355 tobacco control, 98-100 Behavioral Risk Factor Surveillance System (BRFSS), 16, 339 Bladder Cancer Advocacy Network, 109, 120, 126 Bloch Cancer Foundation, 110, 126 Board of Oncology Social Work Certification, 286, 303 Bone marrow transplantation, 28, 166, 168 Brain Tumor Society, 110, 120, 127, 132 Brain tumors, 27, 30 n.7, 105, 110, 115, 120, 127, 132 Breast cancer adherence to medical regimens, 58 and cognitive impairment, 27-28, 104-105 coping mechanisms, 60 delivery of care, 41, 192, 196, 197, 272 educational interventions, 87, 123, 125, 234, 236, 385 emotional distress in caregivers and family, 4, 31, 184 evaluation of interventions, 391 exercise interventions, 102 and fatigue, 28 information resources and needs, 110, 116, 117, 118, 122, 123, 178, 180, 184, 186, 236 mortality, 41 nutrition interventions, 100 physician–patient communication, 162 prostheses and wigs, 102, 103, 138 and psychological distress, 4, 30, 31, 166, 168 n.6, 357, 382 psychosocial interventions/services and, 66, 87, 89, 90, 100, 110, 116, 117, 118, 122, 126, 127, 128, 331, 354, 357 quality-of-life assessment, 358-359 social supports and, 54, 66, 89, 90, 110, 126, 127, 128, 132, 380 treatment protocols, 24, 58, 162 Brief Symptom Inventory-18©, 167, 169, 177 Brief Zung Self-Rating Depression Scale, 167 Bristol-Meyers Squibb Foundation, 318 British Columbia Cancer Agency, 170 Brown Cancer Center, 96 n.6 Building Health Systems for People with Chronic Illnesses, 155, 201 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �12 INDEX C C3: Colorectal Cancer Coalition, 11 C-Change, 312, 314-315 Cancer. See also Adult survivors of childhood cancer; specific sites and chronic illness, 26-27 prevalence, 2 psychological stress and incidence of, 63-64 reach and influence, 2-4, 24-26 survival rates, 2, 26, 66, 98, 100, 102, 107, 192, 363, 375, 388, 403 trajectories, 24, 25, 68 Cancer Action, 226, 227, 229 Cancer Hope Network, 127 Cancer Information and Counseling Line, 127 Cancer Information Service, 229, 230, 233, 235 Cancer Institute (Australia), 192 Cancer Legal Resource Center, 136, 265 Cancer Networks (UK), 203 Cancer Patient Need Questionnaire (CPNQ), 174-175, 177, 188 Cancer Patient Need Survey (CPNS), 174- 175, 188 Cancer Rehabilitation Evaluation System (CARES), 174-175, 188, 358 Cancer Research and Prevention Foundation, 110 Cancer Support Network, 224-225 Cancer Survival Toolbox, 164, 243, 245 Cancer Survivors Network, 125 CancerCare, 4, 33-34, 39, 89, 103, 108, 110, 118, 120, 128, 133, 134, 137, 229, 230, 232, 233, 267, 318, 373 Candlelighters Childhood Cancer Foundation, 110 Cardiovascular disease, 3 n.2, 4 n.3, 24, 27, 33 n.9, 35, 37, 52, 54, 55 n.3, 56, 57, 58, 61, 62-63, 65, 94, 96, 100, 202, 233, 251, 330, 334, 336, 358 Care coordination. See also Case management; Collocation and integration of services; Referral for psychosocial health services competency of providers and, 287, 299, 303, 310, 313, 314 complexity of services and, 260 definition, 195 demonstration projects, 248, 259, 384, 392 economics of, 238, 256, 258 effectiveness, 98, 195-196, 198-199, 207, 225, 241 information technology and, 197-198, 201, 314, 395 mechanisms for, 155-157, 197-198, 203, 222-223, 227, 228, 336-337 Medicare program, 172, 191, 246, 248, 253-254, 255-258, 259, 274-275 multidisciplinary team care, 155-157, 195, 197 recommendations of prior reports, 379, 381, 384, 386, 387, 391, 392, 395, 405 reimbursement policies, 12, 241, 242, 246, 248, 250, 253-258, 268, 274- 275, 276, 337, 384 research needs, 333, 336-337, 338 as standard of care, 7, 8, 9, 15, 41, 153, 154, 158, 199, 203, 220, 222 workforce supply and, 287 written care plans, 173 Care management. See Case management Care/system navigators, 114, 190, 193-195, 196, 197, 223, 247, 254, 257-258, 260, 285, 287-288, 303, 314, 315, 316, 334, 336, 337, 388 Caregivers. See Families and caregivers Case management competency of providers, 299, 303, 315, 316 components, 199 demonstration projects, 259 depression, 154, 191, 205 effectiveness, 191-193, 196, 197 free services, 135 for high-cost beneficiaries, 256, 259 model programs and examples, 155, 157, 201, 205, 206, 207, 222 recommendations of prior reports, 384 reimbursement policies, 246, 249, 256, 257, 259 research needs, 227 training, 316 transportation issues, 39 workforce, 285, 287 Catholic Charities, 226 Center for Patient Partnerships, 236 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �1� Centers for Disease Control and Prevention (CDC), 260, 263, 366, 380, 392, 394, 396, 404 BRFSS, 16, 339 National Comprehensive Cancer Control Program, 200 Centers for Medicare & Medicaid Services (CMS), 12, 13, 17, 18, 219, 239, 242, 259, 277, 321, 339, 340, 341, 372, 392. See also Medicaid; Medicare Central nervous system cancers, 36 Charlson Comorbidity index, 168 n.6 Chemotherapy, 3, 24, 26, 28, 58, 102, 105, 196, 227, 228, 251, 271 Child care services, 34, 102, 132, 133, 172 n.12, 194, 336 n.3, 354, 357 Children. See Adolescent cancer patients; Adult survivors of childhood cancer; Pediatric cancer patients Children’s Hospital of Philadelphia, 307 Chronic Care Model, 155, 201-202, 358, 373 Chronic Disease Self-Management Program, 96 CINAHL (Cumulative Index to Nursing and Allied Health Literature), 15, 84, 85, 330, 363 Clinical practice guidelines Australian Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer, 156, 203, 354, 380, 381, 383, 385, 389 inadequacies in, 41 incorporating tested interventions in, 92 NCCN Distress Management, 155, 169, 202-203, 356, 357, 379, 380, 382, 386, 389, 391 needs assessment, 171 n.10 psychopharmacological services, 95 recommendations of prior reports, 379- 383, 385, 386, 389, 391, 395, 398 Clinical trials design, 89, 91, 93, 94, 392 evidence of intervention effectiveness from, 92, 94, 101 information on, 109, 110, 111, 112, 113, 114, 115, 116, 117, 134 needs assessment instruments, 174 palliative care in, 403 recommendations, 392 referrals to, 128, 134 Clinician and Group Survey Instruments, 243 Cochrane Collaboration, 191 Cognitive-behavioral therapy, 92, 93, 95, 96, 99, 100. See also Behavioral change interventions Cognitive impairment in adults, 27-28, 104-105, 331 breast cancer and, 27-28, 104-105 in children, 27, 105-106 effectiveness of services, 104-106, 331 emotional distress/mental illness and, 5, 58-59 services to address, 10, 82, 104-106, 264-265 Collaborative care model, 204-205 Collaborative Care of Depression, 156 Collocation and integration of services, 158, 190, 195 n.17, 196, 201 approaches, 220-225 communication between providers, 193, 221 economics of, 238 education and training of clinicians and, 14, 41, 283, 310, 320, 322 effectiveness, 193, 221, 241, 336-337 mental health clinicians, 13, 268 recommendations of prior reports, 384, 399 and reimbursement policies, 241, 267- 268, 275, 276-277 Colon cancer, 24, 30 n.7, 94, 110, 127 Colon Cancer Alliance, 110, 127 Colorectal cancer, 28, 110, 194, 272 Colorectal Cancer Network, 110 Commission of Rehabilitation Counselor Certification, 308 Commission on Collegiate Nursing Education, 297 Commission on Rehabilitation Education, 308 Commission on the Accreditation of Counseling and Related Educational Programs, 308 Communication. See Patient–provider communication Communities effects of failure to address psychosocial needs of patients on, 67, 68 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� INDEX Community Cancer Centers Pilot Program, 195, 198, 403 Community care, 6, 44, 374 Community Tracking Study Household Survey, 35 Comprehensive Breast Cancer program, 168 n.6 Comprehensive Health Enhancement Support System (CHESS), 232-233, 235-236 Congestive heart failure, 27, 196, 202 Consolidated Standards of Reporting Trials, 91, 94 Consumer Assessment of Healthcare Providers and Systems (CAHPS), 16, 17, 243, 245, 248, 271, 272, 278, 339 Coping skills avoidant, 60-61 and health behaviors, 52, 57, 58, 60, 61 and information needs and resources, 10, 38, 82, 87, 113, 115, 116, 117, 119, 121, 123, 364 interventions, 10, 82, 88-95, 96, 106, 127, 309 logistical resources and, 39 and morbidity and mortality, 64, 66 needs assessment, 174, 188, 251, 336 n.1 physiological effects, 66, 334 positive mechanisms, 60 provider competency issues, 292, 300, 301, 318 psychological stress and, 5, 52, 54-55, 60, 88-95 screening instruments, 166, 172 n.12 social supports and, 53, 88, 89, 90, 127 with treatment and cancer effects, 24-25, 26, 357 Coronary artery disease, 62, 65 Council on Social Work Education, 301, 302, 303 Counselors licensed, 93, 226, 283, 284, 286, 303, 304 n.18, 308 pastoral, 284, 286, 309, 374 peer, 110, 127 workforce, 286 CureSearch, 110 D Dane County Latino Health Council, 236 Dartmouth-Hitchcock Medical Center, 168 n.6 Decision making on treatment aids, 15, 86, 87, 112, 113, 118-119, 121, 123, 162-163, 164, 235, 311 competency of professional, 298, 310, 314, 317, 333, 337 coordination/integration of care and, 192, 198, 201, 204, 205 older adults, 26 and outcomes, 161-162, 358, 384-385 patient preferences, 11, 26, 86, 160, 161, 176, 184 patient–provider communication and, 159, 160-162, 163, 238, 243, 271, 333, 337 support services, 85, 86, 203, 233, 235, 405 Definitions. See Nomenclature standardization Delivery of psychosocial health services. See also Clinical practice guidelines ambulatory care setting, 13, 18, 41, 44 n.19, 198, 221, 224, 228, 243, 251, 270, 271, 272, 277, 284, 292, 337, 340 approaches, 220-236 common components, 154, 155-157, 242 coordinating psychosocial and biomedical care, see Care coordination for depression, 204-206 empirically validated models, 153-159, 201-207 examples, see Standard of care follow-up, 8, 99, 116, 154, 155-157, 158, 169, 172, 173, 194, 197, 199, 201, 204, 205, 206, 222, 223, 226, 227, 228, 229, 230, 232, 242, 246, 255, 256, 257, 258, 271, 275, 375, 382, 383, 386, 387, 392, 395, 396 identifying patients with needs, 83, 153, 154, 164-173, 242, 246, 249-253; See also Needs assessment; Screening psychosocial problems interventions for, see Psychosocial interventions Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �1� linking patients to services, 83, 98, 190- 195, 242, 246; See also Care/system navigators; Case management; Collocation and integration of services; Referral for psychosocial health services with local resources, 98, 225-229 monitoring progress, 16-18 patient–provider communication, 159- 164, 243-249 payment and policy environment and, 6, 12-13, 41; See also Reimbursement policies planning care, 157, 173, 246 policy supports, see Policy supports and constraints recommended demonstration and evaluation of approaches, 12, 17, 238-239 remote providers, 229-236 research needs, 93-94, 333-337 self-management support, see Illness self-management standard-of-care recommendation, 199-200 supportive and palliative care for adults, 203-204 unifying model for, 7-8, 154, 158-199 Department of Health and Human Services (DHHS), 16, 17, 18, 321, 339, 340- 341, 365, 366, 384, 397 Department of Veterans Affairs, 247, 373 Depression in caregivers and family members, 4, 31, 32, 67 case management, 191, 205 chronic diseases and, 3 n.2, 56, 61-62 and cognitive impairment, 5, 58-59, 105 collaborative care model, 204-205 community effects of, 68 competency/expertise of clinicians, 267- 268, 300, 301 and coping abilities, 54, 57 delivery of services for, 94, 191, 196, 204-206, 363 and disease development, 61-62, 64 effectiveness of services and interventions, 7, 81, 90, 91, 92-93, 94-95, 154, 191, 196, 204, 206, 332-333 and financial pressures, 4, 33 n.9, 55 n.3, 68 and functional impairment and disability, 5, 57 and health behaviors, 5, 37, 52, 57, 58, 59, 204 health services for, 69, 88, 95, 196, 301 and immunocompetence, 63, 64, 65 insurance coverage, 250, 256, 268 medications, 94-95 and morbidity and mortality, 52, 61-62, 63, 64 patient–provider communication and, 161, 315 and physical symptoms, 5, 57, 62 prevalence in cancer patients, 1, 30, 56- 57, 62 prevention, 95 provider failure to recognize and address, 5, 23, 40, 165 psychological stress and, 1, 54, 61-62 quality-of-care measures, 270, 271, 272, 363, 364 recommendations of prior reports, 372, 381, 388, 392 research methods and needs, 332-333, 392 screening and assessment, 154, 156, 157, 165, 166, 167, 168, 169, 170, 192, 203, 204, 226, 247, 250, 354, 381, 392 social supports and, 54 in survivors post-treatment, 388 treatment models for primary care settings, 204-206 Derdiarian Informational Needs Assessment (DINQ), 178-179, 189 Developmental problems, 32-33 Diabetes, 3, 4, 24, 33 n.9, 35, 37, 52, 55 n.3, 56, 58, 65, 86, 94, 96, 191, 196, 198, 202, 251, 258, 259, 272, 319, 330, 334, 336, 358 Diabetes Self-Management Assessment Tool, 334 Diet and nutrition, 5, 15, 52, 57, 58, 60, 61, 98, 100-102, 109, 111, 114, 117, 119, 169, 338, 355 Disability age and, 26 competency of service providers, 299, 305, 401 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� INDEX delivery of support services, 201, 404 and depression, 5, 57, 62 emotional distress and mental illness and, 57, 59-60 and employment, 389 financial assistance, 10, 266, 364 financial stress and, 55 formal support services, 10, 82, 104, 107, 108, 135, 264, 265, 266, 364 functional, 3, 5, 26, 52, 59-60; See also Activities of daily living legal protections, 10, 82, 104, 107, 264, 265, 364, 393 likelihood in cancer patients, 23, 24-25, 26-28, 68 peer support programs, 89 psychosocial factors, 2, 4, 5, 55, 57, 59-60 self-management programs, 96, 358 treatment-related, 26, 68 Discrimination, 33, 356, 388 Disfigurement, 33, 89 Distress Thermometer, 166-167, 168-169, 170, 230, 334 E Education. See Informational support; Patient and family education Education and training in biopsychosocial approaches. See also specific types of pro�iders accreditation and licensure standards, 283, 289-290, 291-292, 297, 298, 301-302, 304-305, 308, 311-312 barriers to, 40-41, 308, 310-319 communication skills, 163-164, 311, 315, 317-318 core competencies, 290-291, 297, 299, 307-308, 311-316, 319-320 current practice environment and, 310-311 faculty needs, 316 gender, ethnic, and behavioral considerations, 292 interactive, multicomponent program, 318 interdisciplinary, experiential, statewide program, 318-319 learning collaborative, 319 licensure, 14, 254, 255, 283, 285, 286, 289, 291-292, 296, 298, 300, 301, 302, 303, 304, 305, 306, 307, 308, 309, 312, 316, 320, 321-322, 374 monitoring progress in, 18, 291, 309, 320, 340-341 recommendations, 13-14, 18, 283-284, 320-322 specialty certification, 14, 18, 225, 245, 248, 268, 283, 284, 285, 286, 293-294, 296, 300-301, 302-303, 305-306, 307, 308, 309, 316, 320, 321-322, 341, 390, 391 teaching practices, 316-319 Effectiveness research agenda, 330-333 behavioral change interventions, 7, 98-102 challenges, 330-331 cognitive and educational assistance, 104-106 committee approach, 83, 353-370 CONSORT criteria, 91, 95 counseling and psychotherapy, 91-94 family and caregiver support, 106-107 identifying effective services, 331, 360- 363, 365-366 on information support, 85-87 legal protections and services, 107-108 material and logistical resources, 7, 102-103 mental health therapies, 7, 81, 88-95, 154, 191, 196, 204, 206, 332-333 needs, 93-94, 95 outcomes of interest, 90, 91, 101-102, 107, 363-365 on peer support groups, 38, 84, 88-90, 99 personal care services, 104 populations and scenarios, 331-332 psychopharmacological services, 94-95, 332-333 recommendations, 12, 17, 85, 238-239 robustness of methods, 332-333 self-management and self-care interventions, 95-98 taxonomy and nomenclature issues, 83-85 Electronic health records, 197-198 EMBASE, 15, 84, 85, 330, 363 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �1� Emotional distress and mental illness. See also Coping skills; Depression; Psychological stress and cognitive impairment, 5, 28, 58-59 economic costs of, 68 effects on cancer patients, 56-60 financial pressures and, 56 and health behavior, 3, 5, 57-58 insurance coverage, 261-267 and motivation, 5, 59-60 needs and services, 10 physical stressors and, 24-25 screening for, 168 and somatic problems, 5, 24-25, 28, 56- 60, 94 Emotional support. See also Peer support programs; Psychotherapy and counseling beneficial effects, 8, 53, 54, 66, 88-95, 107 competency of providers, 314 counseling and psychotherapy, 10, 91-94 defined, 53 effectiveness of services, 7, 81, 88-95, 154, 191, 196, 204, 206, 332-333 for families and caregivers, 106, 107 formal services, 92, 93, 94, 158, 231 free services, 125-132 health services, 82, 83, 241 informal sources, 83, 90, 261 information resources, 114, 115, 125-132 pharmacological therapies, 10, 94-95 remote providers, 229, 232-233, 235 Employee Assistance Programs, 249 Employment changes, 3, 10, 29, 33, 34, 35, 36-37, 39, 57, 67-68, 82, 114, 314, 359, 365, 375, 383, 385 Empowering Older People to Take Control of Their Health Through Evidence- Based Prevention Programs, 96 n.5, 249 End-stage renal disease, 58, 59, 206 European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, 358 Examination for Professional Practice in Psychology, 305, 307 Exercise/physical activity, 355, 358 assessment/monitoring, 82, 169, 364 benefits of, 28, 101-102, 106-107 and depression, 5, 57 information resources, 109, 114, 224 interventions, 10, 15, 95, 98, 100-102, 106-107, 224, 226, 338 as performance measure, 271 psychological stress and, 52, 60, 61 as response to cancer diagnosis, 57-58 F Facing Our Risk for Cancer Empowerment, 110, 127 FAMCARE, 182-183, 189 Families and caregivers depression in, 4, 31, 32, 67 effectiveness of services, 106-107 morbidity and mortality in, 4, 32, 67 needs assessment, 172, 182-187 nomenclature, 43 provider communication with, 159 psychological stress in, 31-32, 66, 67, 98 screening instruments, 169-170 support services, 10, 82, 106-107, 137, 262-263 value of nonreimbursed care, 21-32, 260-261, 263, 265, 267 Family and Medical Leave Act, 10, 82, 104, 107, 264, 364, 393 Family Inventory of Needs, 184-185, 189 Fatigue in cancer patients ADL limitations, 28, 29, 104 assessment instruments, 167, 224, 226, 335 assistance services, 104 caregiver’s mental health and, 4, 31 competency of service providers, 300 definition of, 28 emotional distress and mental illness and, 5, 24-25, 28, 56-60, 94 information resources, 113 and management of illness and health, 37 mechanisms and manifestations, 28 pain and, 29 physical activity and, 101 prevalence rates, 28 psychosocial effects of, 28, 29, 364 treatment/management of, 28, 92, 96- 97, 101, 113, 336, 358, 364, 372 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �1� INDEX fertileHope, 111 Financial stress. See also Health insurance clinical practice guidelines, 203 and illness management, 55 medical debt, 33-34, 39, 55 problems of patients and families, 3, 4, 33-34, 37, 55-56 support services, 7, 10, 34-35, 82, 85, 108, 110, 111, 114, 119, 132-135, 194, 227, 229, 264-265, 266-267 uninsured patients, 35, 55 Functional Assessment of Cancer Therapy, 358 G Geisinger Health System, 243 Gilda’s Clubs, 89, 120, 128, 229 H Head and neck cancers, 30 n.7, 36, 99, 116, 131 Health behaviors. See also Adherence to treatment regimens; Behavioral change interventions; Diet and nutrition; Exercise/physical activity coping skills and, 60 depression and, 5, 37, 52, 57, 58, 59, 204 financial stress and, 34, 55 screening for, 168 self-efficacy and, 38, 59, 66, 87 Health care providers. See also Education and training in biopsychosocial approaches; Workforce; specific types of pro�iders information resources for, 115 knowledge of psychosocial resources, 5-6, 7, 11 recommendations for, 10-11, 237 Health insurance. See also Reimbursement policies absent or inadequate coverage, 3, 4, 34, 37, 55-56, 237, 261-267 and access to care, 261-268 accreditation standards, 268 capitated payment, 257 and delay in treatment, 34 and emotional/physical well-being, 56 incentives for effective delivery of services, 13, 16, 41 legislation, 267 monitoring progress, 17 recommendations, 12-13, 17, 275-277 research needs, 337 resources, 10, 85, 108, 110, 111, 114, 264-265 Health maintenance organizations, 190, 250 Health Resources and Services Administration, 321, 373, 396, 406 Health services. See Psychosocial health services Health services research agenda comprehensive illness and wellness management interventions, 336 improving patient–provider partnership, 333 linking patients with services and coordinating care, 336-337 needs assessment, 335-336 reimbursement arrangements, 337 screening tools, 334-335 Healthplan Employer Data and Information Set (HEDIS), 271 Hershey Medical Center, 318 Hill-Burton Program, 133, 267 HIV/AIDS, 3, 52, 56, 57, 58, 59, 60, 61, 63, 89, 90, 93, 191, 233 Hodgkin’s disease, 30 n.7 Home Care Study-Caretaker Form (HCS-CF), 184-185, 189 Home Care Study-Patient Form (HCS-PF), 176-177, 188 Home Caregiver Need Survey (HCNS), 184- 185, 189 Hope Lodge, 135 Hospital Anxiety and Depression Scale (HADS), 167, 168, 169 Housing, 135 I I Can Cope Program, 119 Illness self-management case management and, 192-193 definitions, 84, 95, 195, 357-358 effective models of care delivery, 96-97, 155-157, 201, 202, 204, 205, 221, 223, 224, 313, 376 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �1� health behaviors and, 169 informational support and, 86, 95, 231- 232, 233 need for services, 10, 364 patient–provider communication and, 37 policy support for, 248, 258, 259 research needs, 336 screening tools and approaches, 334 self-efficacy and, 38, 59, 88, 89, 95 social supports and, 55 Stanford model, 96, 358 support programs, 10, 38, 82, 86, 95- 98, 106, 195, 204, 221, 223, 224, 249, 275, 357-358 Immune function, 5, 51, 52, 54, 61, 64-66, 101, 333 Improving Chronic Illness Care program, 202 Improving Mood—Promoting Access to Collaborative Treatment for Late-Life Depression (IMPACT) project, 157, 205-206 Improving Supportive and Palliative Care for Adults with Cancer, 156, 203-204 Income. See Employment changes; Financial stress Individual Cancer Assistance Network, 318 Individuals with Disabilities Education Act, 107, 265 Information and Support Needs Questionnaire, 186-187, 189 Information Needs Measure, 180-181, 189 Informational support. See also Patient and family education availability, 81, 82, 85-86, 109-117, 262-263 benefits of, 53, 86, 87, 95 decision-support tools, 87, 112 definition, 53 dissatisfaction with, 5, 37-38 effectiveness of, 38, 85-87 free sources on psychosocial health services, 81, 82, 85-86, 109-117 Internet, 87, 109-117 methods of delivery, 38, 86-87, 88 needs, 3-4, 10, 11, 37, 38, 82, 85, 87 for providers, 11, 197-198, 201, 314, 395 Institute for Healthcare Communication, 164, 243, 245 Institute for Healthcare Improvement, 202 Instrumental support, defined, 53 Insulin-like growth factor, 102 Insulin-like growth factor binding protein 3, 102 Interferon, 95 International Association of Laryngectomees, 111 International Myeloma Foundation, 111, 121, 123 J Joint Commission on Accreditation of Healthcare Organizations, 13, 18, 274, 277, 278, 340, 397 Speak UpTM initiatives, 245 K Kaiser Permanente, 243, 373 Kansas City Cancer Center, 225-227 Kansas City Community Foundation, 227 Kansas City Free Health Clinic, 226 Kidney Cancer Association, 111, 121 L Lance Armstrong Foundation, 111, 128, 134, 230, 273, 274, 366 Legal Information Network for Cancer, 265 Legal protections and services, 10, 38, 82, 104, 107-108, 136, 159, 264-265, 356, 359, 383, 385, 388, 389 Lehigh Valley-Allentown Cooperative Cancer Center, 318 Leukemia, 24, 30 n.7, 36, 89, 112, 121, 128, 133 acute lymphoblastic, 27, 105, 251, 267, 366 Leukemia & Lymphoma Society, 89, 112, 121, 128, 133, 267, 366 Liaison Committee on Medical Education (LCME), 289-290 Liver cancer, 30 n.7 LIVESTRONG Survivorship Center of Excellence Network, 274 Li�eStrong® Survivorship Notebook, 227 Living Beyond Breast Cancer, 118, 122, 128 Living with Breast Cancer program, 236 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �20 INDEX Long-term care, 201 Look Good . . . Feel Better Program®, 112, 119, 228 Lung cancer, 28, 30 n.7, 94, 98, 112, 114, 129, 330 Lung Cancer Alliance, 112, 129 Lung disease, chronic, 37, 52, 56, 57, 58, 96, 336, 358 Lustgarten Foundation for Pancreatic Cancer Research, 113 Lymphoma, 27 n.4, 28, 30 n.7, 36, 89, 112, 118, 121, 122, 128, 129, 133, 134, 136, 366 Lymphoma Foundation of America, 112, 118, 122, 129, 136 Lymphoma Research Foundation, 112, 122, 129, 134 M MacArthur Initiative on Depression and Primary Care, 205 Man-to-Man Program, 125 Management of illness. See Illness self-management Management of psychosocial stressors health care system deficits, 40-42 information and education deficits, 37-38 knowledge and skills of health professionals and, 37-38 logistical resources, 39-40 obstacles to, 37-42 Mastery, 52, 107 Material and logistical resources, 7, 10, 82, 102-103, 137, 168, 194, 227. See also Financial stress; Transportation for patients and families Maternal and Child Health Programs for Children with Special Health Care Needs, 247 Mayo Clinic, 373 Medicaid, 13, 81, 103, 104, 228, 242, 243, 244, 248, 262, 264, 266 Early Periodic Screening, Diagnosis, and Treatment, 246, 264 Medical Outcomes Short Form (SF-8), 168 n.6 Medical Outcomes Study, 358 Medical supplies, 262-263 Medicare. See also Reimbursement policies assistance in negotiating care from, 135 care coordination program, 172, 191, 257-258, 259 Care Management for High-Cost Beneficiaries, 259 claims paid, 253 coverage for psychosocial services, 13, 17, 35 n.12, 104, 228, 241, 249-250, 257-258, 260, 261, 262, 264, 266, 340 Health Outcomes Survey, 272 Health Support Demonstration, 259 monitoring quality of care, 397 payment rates, 254, 256 Physician Group Practice Demonstration, 259 prescription drug benefit, 393 relative value units, 255 technology assessment and coverage, 242 Melanoma, 30 n.7, 97, 113, 271 Melanoma Research Foundation, 113 Memorial Sloan-Kettering Cancer Center, 313, 317, 373 Men Against Breast Cancer, 123 Mental health providers. See also Counselors; Psychologists education and training, 303-309 workforce supply, 288 Mental illness. See Depression; Emotional distress and mental illness Metabolic syndrome, 102 Methylphenidate, 105 Metro CARE, 226 Moffitt Cancer Center, 268, 373 Moores Cancer Center, 222-224, 229 Motivation, 5, 28, 57-58, 59-60, 88, 206, 369 Mucositis, 97 Multiple Myeloma Research Foundation, 113, 123 N National Association of Social Workers, 286, 302, 303, 318 National Board for Certified Counselors, 308 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �21 National Breast Cancer Centre (Australia), 95 National Cancer Control Initiative (Australia), 92, 95 National Cancer Institute, 11, 12, 13, 16, 17, 113, 160, 161, 163-164, 219, 237, 239, 242, 260, 263, 277, 330, 338, 339, 385, 387, 388, 389, 390, 391, 392, 394, 395, 396, 397, 398, 399, 400, 403 Cancer Information Service, 229, 230, 233, 235 Community Cancer Centers Pilot Program, 195, 198, 403 Metathesaurus, 84 Outcomes Research Branch, 273 Patient Navigation Research Program, 194-195 Physician Data Query, 204 Quality of Cancer Care Initiative, 200 Research Symposium on Consumer– Provider Communication, 245 website, 233 National Cancer Plan (UK), 203 National Coalition for Cancer Survivorship, 114, 123, 366, 385 National Committee for Quality Assurance, 13, 17-18, 274, 277, 278, 340, 397 National Comprehensive Cancer Network, 12, 17, 95, 154, 200, 277, 340, 366 Clinical Practice Guidelines for Distress Management, 155, 169, 202-203, 356, 357, 379, 380, 382, 386, 389, 391 Distress Thermometer, 166-167, 168- 169, 170, 230, 334, 357 National Council Licensure Examination, 298 National Council of State Boards of Nursing, 298, 301 National Family Caregiver Support Program, 137 National Health Care Quality Report, 272 National Health Information Infrastructure, 197 National Health Interview Survey, 27, 29, 36, 334 National Health Service (UK), 197 National Institute for Clinical Evidence, 172, 203 National Institutes of Health, 6, 15, 16, 17, 18, 23, 43, 85, 321, 329, 338, 340, 341, 353, 355, 372, 394, 399 Medical Scientist Training Program, 401 Office of Behavioral and Social Science Research, 42, 289 PROMIS initiative, 335 National Latino Cancer Research Network, 236 National League for Nursing Accrediting Commission, 297, 298 National Library of Medicine. Medical Subject Headings (MeSH), 15, 24 n.3, 84, 85, 330, 363 National Lung Cancer Partnership, 114 National Lymphedema Network, 114 National Ovarian Cancer Coalition, 114, 129 National Prostate Cancer Coalition, 114 National Quality Forum, 13, 17, 270, 272, 274, 277, 278, 340, 366, 397 National Survey of U.S. Households Affected by Cancer, 5-6, 34, 35, 38, 40, 55 Nausea/vomiting, 92, 96 Need Evaluation Questionnaire, 176-177, 188 Need Satisfaction Scale, 186-187, 189 Needs assessment caregivers, 182-187 case management, 192 definition, 171 domain comparison across instruments, 173, 188-189 effectiveness, 154, 165, 172 follow-up, 154, 169, 172, 199 instruments, 172-173, 174-189, 335-336 model programs, 156, 157 and patient–provider communication, 172 policy supports and barriers to, 247, 251-253 research needs, 173, 335-336 screening contrasted, 171 stage-specific, 180-183 Needs Near the End-of-Life Care Screening Tool (NEST), 182-183, 189 Needy Meds, 114 New Freedom Commission on Mental Health, 288 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �22 INDEX New York Legal Assistance Group, 107, 108 Nomenclature standardization committee definitions, 43-44, 359-360, 363 conceptual framework, 355-359 confounding in research, 44, 363 defining psychosocial services, 43-44, 353-360 DMS-IV-TR, 355-357 in effectiveness research, 83-85, 363 existing definitions, 254-255 face validity of, 359 “fatigue,” 29 health-related quality of life, 358-359 illness self-management programs, 97, 98, 357-358 monitoring progress in, 18 NCCN, 357-358 recommendation, 14-15, 18, 85, 98 North American Brain Tumor Coalition, 115 Northland CARE, 226 Nurse Licensure Compact Agreement, 300 Nurse practitioners, 220, 225, 226, 227, 250 n.5, 254, 255, 286, 297, 300, 301, 388 Nurses associate and baccalaureate education, 297-298 delivery of interventions, 41 n.18, 89, 96, 97-98, 99, 190, 192, 194, 224, 226 faculty, 316 licensure, 298, 300 registered, 296-301 reimbursement policies, 247, 249, 254 specialty certification and continued competency, 300-301 workforce, 286, 288 Nursing care, 106 Nutrition. See Diet and nutrition O Older adults communication with providers, 159, 162 depression, 56-57 developmental problems, 32 immune response to stress, 65 need for services, 25-26, 254 Older Americans Act, 81, 104, 247 Oncology Nursing Certification Corporation, 300 Oncology Nursing Society, 13, 17, 34, 277, 286, 340, 366, 382, 385, 389, 391 Optimism, 52, 60 Oral Cancer Foundation, 115, 130 Osteopenia/osteoporosis, 100 Outcome Project, 293 Ovarian cancer, 66, 114, 115, 129 Ovarian Cancer National Alliance, 115 Overweight/obesity, 100 P PACE (Patient Assessment, Care, and Education), 169 Pain age and coping with, 26 assessment of, 167, 172 n.12, 182, 188- 189, 224, 226, 251, 271, 314-315, 335, 336 n.1, 357 competency and education of health professionals, 300, 301, 306, 310, 314, 318 effectiveness of interventions, 92, 96, 364 emotional distress and mental illness and, 5, 25, 30, 57, 59, 62, 231 and fatigue, 29 information resources, 86, 113, 224- 225, 231 and limitations in ADLs, 29, 104 and management of stressors, 37, 38 in pediatric patients, 251 psychosocial effects, 25, 29 treatment/management, 29, 60, 86, 92, 96-97, 107, 113, 196, 220, 224-225, 300, 301, 306, 310, 314, 336, 358, 372 Palliative care, 6-7, 43, 114, 180, 182, 183, 203, 206, 224, 296, 303, 313, 355, 399, 403 Palliative Care Assessment, 180-181, 189 Pancreatic cancer, 30 n.7, 113, 115, 119, 124, 130 Pancreatic Cancer Action Network, 115, 119, 124, 130 Partners in Care, 157, 206 Patient Advocate Foundation, 128, 134, 135, 267 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �2� Patient advocates and advocacy organizations, 11, 89, 164, 193, 237, 238, 257. See also indi�idual organizations Patient and Caregiver Education program, 113 Patient and family education. See also Informational support free services, 119-125, 229 interventions, 10, 87, 89, 97, 10, 106, 194, 227, 232, 234 monitoring progress in, 16-17, 339 providers, 220 recommendations, 11, 237-238 reimbursement policies, 248 Patient and Liaison Services, 115 Patient Care Monitor, 166, 169, 170, 224, 334 Patient Health Questionnaire, 167, 168 n.6, 226, 250 Patient information. See Informational support Patient Information Need Questionnaire, 178-179, 189 Patient Navigation Research Program, 194-195 Patient Needs Assessment Tool, 176-177, 188 Patient–provider communication. See also Decision making on treatment barriers to, 40-41 coached care, 162 cross-cultural, 244-245, 315 current, 160-161 and depression, 161, 315 effective model for, 159-164 and illness self-management, 37, 97 importance, 161-162 interactive videos, 162-163 interventions to improve, 97, 114, 162- 163, 243-245 key aspects, 159-160 needs assessment and, 172 passive patients, 161 performance measures, 272 policy support, 243-245, 248-249 poor or lack of, 3-4, 5, 37, 38, 40 promoting behavioral change, 98, 99 remote resources, 230, 231 research needs, 161, 333 training providers in, 163-164, 311, 315, 317-318 Pediatric cancer patients. See also Adult survivors of childhood cancer cognitive impairment, 27 communication with providers, 159 developmental problems, 32-33, 332 and health outcomes, 161-162 information resources, 110 psychological stress in families and caregivers, 31, 59, 169-170 PTSD/PTSS in, 54 research needs, 331, 332 school re-entry and reintegration programs, 105-106, 265, 331 screening and needs assessment, 169- 170, 246 social functioning, 33 Peer support programs availability, 4, 10, 38, 82, 262-263, 364 competency of providers, 312 components and uses, 88-90 counseling services, 98, 99, 118, 374 defined, 88 delivery of services, 232 effectiveness, 38, 84, 88-90, 99 emotional support services, 126, 127, 128, 129, 130, 131 information resources, 38, 110, 112, 232 nomenclature/terminology issue, 84 outcome measures, 89 provider involvement, 89 provider knowledge of and referrals to, 38, 232 provider workforce, 284 research needs, 90 transportation issues, 39, 55 virtual, 87, 90, 232 Pennsylvania Cancer Control Program, 318 People Living With Cancer, 115, 228 Performance measurement adopted/endorsed, 271-272 ensuring use of, 270, 272 as incentive, 274 infrastructure, 274 instruments and initiatives, 243, 269-272 leadership role, 273-274, 278 mental health care, 269-270 patient–provider communication, 243 monitoring progress in, 340 in quality oversight, 13, 18, 242, 269- 274, 277, 340 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �2� INDEX recommendations, 13, 17-18, 277-278 reimbursement linked to, 12, 242 Personal care services, 10, 82, 104, 230, 236, 262-263, 364 Personal health records, 198 Pew Health Professions Commission, 297 Pharmacotherapies, 94-95, 105, 114, 227, 262-263, 268, 271, 332-333 Phone Buddy Program, 129 Physical stressors, cancer-induced. See also Disability; Fatigue in cancer patients; Management of psychosocial stressors; Pain health impairment, 26-28 limitations in ADLs, 3, 29 screening for, 169 Physician assistants, 220, 250, 254, 388 Physicians. See also Patient–provider communication continuing education and certification, 18, 164, 296 family medicine, 294 graduate medical education, 164, 293-296 internal medicine and oncology subspecialty, 293-294 medical licensure, 291-292 pediatric training programs, 294-295 psychiatry residency program, 295-296 supply, by specialty, 284-285 undergraduate medical education, 289-291 Picker Institute, 321 Planet Cancer, 115, 130, 232 Policy supports and constraints. See also Performance measurement; Reimbursement policies for availability of services, 260-268 on identifying psychosocial needs, 249-253 information resources on, 115 for interventions, 246-259 on patient–provider communication, 243-245, 248-249 on self-management of illness, 258-259 Post-traumatic stress disorder, 3, 30, 31, 54, 56, 95, 167, 168 n.6, 332-333 Post-traumatic stress symptoms, 30, 31, 54, 56, 167 Preferred provider organizations, 250 Pregnant With Cancer, 130 President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry, 276 President’s Cancer Panel, 40 Press-Ganey Oncology Outpatient patient satisfaction survey, 223 Primary Care PTSD Screen, 167, 168 n.6 PRO-SELF program, 97 Problem Areas in Diabetes (PAID), 334 Projects in the Promoting Excellence in End-of-Life Care Program, 157, 206-207 Prostate cancer, 24, 30 n.7, 55-56, 89, 94, 97, 114, 115, 117, 124, 125, 131, 178-179, 188, 235, 330 Prostate Cancer Foundation, 115 Prostate Cancer Needs Assessment, 178- 179, 188 Prostheses and wigs, 34, 85, 102, 103, 138, 223, 233 Psychological stress. See also Emotional distress and mental illness adherence to treatment regimen and, 59, 63 n.7, 69 chronic, 65 clinician awareness of, 6 and disease, 61-64 in families and caregivers, 31-32 manifestations in patients, 30-31 measures of, 63 n.7 and morbidity and mortality, 32, 52, 53- 54, 61-62, 63, 64, 67, 88-89 psychosocial resources and, 52, 54, 60, 332 physiological effects, 52, 61, 64-66 prevalence, 30 screening for, 6 Psychologists accreditation, 304-305 certification, 305-306 competencies and curricula, 307 graduate training, 306 licensure, 305 pre/postdoctoral internships, 306-307 reimbursement, 251-253 self-assessment model, 313 workforce, 286 Psychoneuroimmunology, 5, 64-65 Psychosocial Assessment Tool©, 169-170 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �2� Psychosocial health services. See also Collocation and integration of services; Delivery of psychosocial health services; Effectiveness research; Psychosocial interventions; indi�idual ser�ices availability, 7-8, 81-83, 108-138, 260- 261, 262-267, 379-380 deficiencies, 5-6 definition, 9, 43-44, 69, 82-83, 359-360 diversity, 82-83 evidence of, effectiveness 7, 81, 85-108 examples of needs and services, 10 free programs, 118-138 importance, 8-9, 66, 68-69 interventions to secure services, 69; See also Care/system navigators; Case management; Referral for psychosocial services; Screening psychosocial problems provider knowledge and attitudes about, 5-6, 7, 11, 40, 41 utilization rates, 190 workforce shortages and maldistribution, 41 Psychosocial interventions. See also Care coordination; Needs assessment; Referral for psychosocial services; Screening psychosocial problems common components, 7 constraints on, 242-259 defined, 9, 354-355 informational, see Informational support needs, 82 Psychosocial Needs Inventory, 178-179, 188 Psychosocial Screen for Cancer, 170-171 Psychosocial services, defined, 9, 84, 354 Psychosocial stressors, 2. See also Emotional distress and mental illness; Psychological stress; Social problems effects on community, 67-68 effects on families, 67 effects on patients, 53-60 obstacles to managing, 37-42 physical, 3, 4-5, 26-29 Psychosocial support, defined, 354 Psychosomatic medicine, 13, 268, 276, 291, 295, 313 Psychotherapy and counseling. See also Peer support programs availability, 118, 262-263 child and adolescent, 88 n.1, 108-109 cognitive-behavioral, 92, 93 competency of providers, 94 effectiveness, 91-94, 106 family and couples, 93 free programs, 118 interpersonal, 92-93 remote resources, 93-94 research needs, 93-94 supportive, 92-93, 98 utilization rates, 192 PsycINFO, 15, 84, 85, 330, 363 PTSD Checklist-Civilian Version, 167 Q Quality improvement initiatives, 200, 206, 268. See also Performance measurement Quality of Cancer Care Initiative, 200 Quality of care. See also Performance measurement; Standard of care measurement, 269-270 needs assessment, 172 oversight, 1, 12, 13, 14, 16, 17, 18, 41, 44, 241, 277, 288, 309, 320, 338, 340 status of, 269 Quality of life conceptual models, 356, 358-359 effectiveness of interventions, 60, 92, 96, 101, 192, 202, 206, 235-236 information resources, 117, 120, 122 interventions, 393 logistical and material resources and, 103 outcome measure, 101, 332, 382, 392, 396 provider education issues, 299, 300, 318, 390 psychosocial stressors, 56 research needs, 400 screening and assessment, 169, 170, 171 n.10, 172, 192, 224, 334, 335, 358-359 Quality of Life Breast Cancer Instrument, 358 Questions Are the Answer Campaign, 243, 245 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �2� INDEX R Radiotherapy, 3, 26, 58, 97, 105, 196, 221, 225 RAND Corporation, 202 Reach to Recovery program, 88, 118, 126 Recommendations access to care, 394 to assure provision of services, 379-380 caregiver (informal) support, 387-388 for continuity of care, 382-384 coordination of care, 386 data systems, 394-395 demonstration and evaluation of delivery approaches, 12, 17, 238-239 employment, 388-389 health care providers, 10-11, 237 illness self-management, 385 monitoring progress in delivery of services, 16-18 nomenclature standardization, 14-15, 18, 85 palliative care, 403 patient and family education, 11, 16-17, 237-238, 385 patient-centered care, 381 of prior reports, 6-7, 379-406 public education, 386 public health, 404 for quality improvement, 382, 395-396, 404-406 quality measurement, 397-398 quality oversight, 13, 17-18, 277-278 reimbursement policies, 12-13, 17, 233- 239, 241-242, 275-277, 386-387, 404 research and demonstrations, 14, 15-16, 320-330, 337-338, 391-393, 398- 400, 404 standard of care, 9, 16, 199-200 workforce education and training, 13- 14, 18, 320-322, 389-391, 401-403 Referral for psychosocial health services, 5, 9, 69, 113, 118, 120, 129, 136, 155, 156, 166, 171, 190-191, 193, 194, 203, 221, 229, 254, 300, 319, 336, 360, 384, 385, 386, 388, 389, 391, 396 Reimbursement policies capitated payments, 257, 275 for care coordination, 12, 241, 242, 246, 248, 250, 253-254, 255-258, 268, 274-275, 276, 337, 384 for case management, 246, 249, 256, 257, 259 collocation and integration of services and, 241, 267-268, 275, 276-277 CPT codes, 246, 247, 248, 249, 250, 251-252, 253, 254, 255 n.10, 258 Evaluation and Management (E/M) services, 246, 247, 248, 249, 250, 253, 254, 255, 256, 258, 262 H/B codes, 251-253, 258, 262 information technology, 242, 257 managed care plans, 247, 249, 257-258, 268 Medicare Advantage, 242-243, 246, 250 Medicare fee-for-service, 228, 242, 244, 246, 248, 249-250, 252, 253-257, 274-275, 276, 337, 367, 374 mental health services, 261-268 monitoring progress in, 339-340 patient/family education, 248-249, 258 and patient–provider communication, 244-245, 248-249 performance incentives, 12, 241, 242, 248-249, 259 recommendations, 12-13, 17, 233-239, 241-242, 275-277, 386-387, 404 research needs, 238-239, 337 for screening or needs assessment, 231, 246-247, 249-250, 264 for telephone calls, 254 Remote providers counseling and psychotherapy, 93-94 implementing use of, 230-232 model program, 229-230 obstacles to use, 236 resources, 232-236 Reproductive aspects of cancer, 111 Research. See also Effectiveness research; Health services research agenda evaluation of impact of this report, 338-341 recommended priorities, 14, 15-16, 320- 330, 337-338 scope of this study, 6-7, 42-44, 366-370 scope of work of this study, 370-376 study methods for this report, 353-376 taxonomy and nomenclature issues, 83- 85, 329-330, 353-360 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �2� Respite care services, 106, 107, 137 Road to Recovery, 39, 136 Robert Wood Johnson Foundation, 201, 319, 366 Depression in Primary Care Initiative, 256 Improving Chronic Illness Care program, 202 Projects in the Promoting Excellence in End-of-Life Care Program, 206 Rotterdam Symptom Checklist, 167, 179 S Samuel Rodgers Health Center, 226 San Diego Hospice, 223 Sarcoma Foundation of America, 116 Science of Caring Program, 222-224 Scope of study, 6-7, 366-370 Screening for cancer detection, 194 Screening psychosocial problems. See also specific instruments clinical practice guidelines, 203 competency of providers, 165, 311, 313, 314 current practice, 6, 164, 165-167, 247 defined, 165, 171 for depression, 154, 156, 157, 165, 167, 205, 226, 247, 250 domains, 334-335 effectiveness, 154, 167, 231 with follow-up, 154, 199, 223, 232 information resources, 114 instruments, 15, 52, 165, 166-171, 176, 182, 224, 226, 230, 249, 250, 334- 335, 337 limitations, 167 n.5, 168 in model programs, 155, 156, 201, 222, 223, 224, 226, 228 needs assessment contrasted, 171 non-English-speaking, 169, 170 performance measures, 270, 272 policy supports and barriers, 246, 247, 249-250 for PTSD, 167, 168 n.6 recommendations of prior reports, 380- 381, 384, 391 reimbursement for, 231, 239-250, 264 research needs, 15, 333, 334-335, 337 in self-care programs, 98 Second opinions, 112 Self-efficacy, 38, 59, 66, 87, 88, 89, 90, 95 Self-esteem, 31, 52, 90 Self-management. See Illness self-management Services. See Psychosocial health services Sexual dysfunction, 31, 33, 54, 93, 96, 97, 172 n.12, 174, 176, 188, 300, 301, 314, 336, 388 Shop Well With You, 116 Short Form (SF) Health Survey instruments, 358 Skin Cancer Foundation, 116 Sleep, 5, 28, 57, 58, 61, 101, 200, 231, 358 Social integration, 53, 54 Social isolation, 11, 15, 31, 51, 54, 62, 66, 238, 334, 338 Social networks, 33, 53, 61, 88-89, 170, 172 n.12, 178, 260, 336 n.1, 368 Social problems. See Employment changes; Financial stress; Health insurance; Social supports Social role functioning, 5, 30, 32, 33, 51, 54, 56, 57, 68, 102, 104, 169, 172, 192, 206, 299, 309, 358, 359 Social Security Disability Income, 10, 82, 108, 134, 264, 267, 364 Social supports. See also Peer support programs availability, 7 and coping abilities, 54 definition and dimensions, 53 and health practices, 55 informal, 39-40, 102-103, 260-261, 263, 265, 267 and mental illness, 54 morbidity and mortality effects, 53-54, 62-63, 65, 66 screening for, 168 weaknesses in, 39-40, 53-55 Social workers, 39 baccalaureate and master’s degrees, 301-302 licensure, 286, 302 recommendations for training, 374, 390, 391, 401, 402 reimbursement, 223, 254 specialization and continuing education, 302-303, 318, 319 support services of, 89, 112, 113, 194, 222, 223, 224, 228, 254, 255, 283, 284, 315, 316, 337, 388 workforce, 286 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html �2� INDEX Society for Pediatric Psychology, 307 Somatic problems. See Fatigue in cancer patients; Pain; Psychosomatic medicine; Sleep Spanish, intervention/services in, 112, 117, 169, 232, 233, 236 Spiritual issues and needs, 31, 169, 172, 178, 182, 184, 188, 203, 207, 226, 297, 299, 300, 309, 315, 334, 336 n.1, 354-355, 357, 359 Standard of care. See also Delivery of psychosocial health services; Performance measurement collocated, integrated care, 221-225 dissemination and uptake, 17, 339 examples of implementation approaches, 220-236 monitoring compliance with, 16 performance rewards, 13, 16 recommendations, 9, 237-239 Stanford University, 96, 358 Starlight, Starbright Children’s Foundation, 130 State Children’s Health Insurance Program (SCHIP), 243, 244, 246, 248, 262, 264, 266 State policies. See also Medicaid Primary Care Case Management, 246 Stroke, 54, 56, 57, 94, 96, 105 n.8, 196, 334, 336, 358 Substance Abuse and Mental Health Services Administration (SAMHSA), 321, 373 Sun protection, 98 Supplemental Security Income (SSI), 10, 82, 108, 134, 264, 267, 364 Support for People with Oral and Head and Neck Cancer, 116, 131, 262 Support Team Assessment Schedule, 182- 183, 189 Supportive Care Needs Survey (SCNS), 176- 177, 188 Supportive Care Network, 169 Survivor care plans, 190 Susan G. Komen for the Cure, 116, 273 Swope Parkway Health Center, 226 T Tahoe Forest Cancer Center, 227-228 Tahoe Forest Hospital, 228 Tamoxifen, 58 Telepsychiatry, 93 Terminology. See Nomenclature standardization Testicular Cancer Resource Center, 116, 131 Three Component Model (�CMTM), 157, 205 Thyroid Cancer Survivors’ Association, Inc., 117, 124, 131 Tobacco use assessment/monitoring, 10, 82, 168 n.6, 169, 271, 364 cessation interventions, 15, 98-100, 271, 272, 306, 331, 338, 355 depression and, 5, 57 mortality, 54 motivation to quit/use, 57, 60, 61 as outcome measure, 271 research needs, 331 screening for, 168 n.6 Toronto Informational Needs Questionnaire-Breast Cancer, 180- 181, 189 Transportation for patients and families grants and services, 7, 33-34, 39, 136, 194, 260 and illness management, 55 need for, 3, 4-5, 39, 55, 102 Turning Point: The Center for Hope and Healing, 226-227 U Ulman Cancer Fund for Young Adults, 131 University of Louisiana, 96 n.6 University of Pennsylvania, 318 University of Pittsburgh, 318 University of Wisconsin Comprehensive Cancer Center, 236 URAC (Utilization Review Accreditation Committee), 13, 18, 277, 340 U.S. Medical Licensing Examination (USMLE), 291-292 U.S. Preventive Services Task Force, 164 US Too, 89, 117, 124, 131 V Veterans Health Administration, 263 Employee Education System, 243 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html INDEX �2� National Cancer Strategy, 200 National Symposium on Clinician- Patient Communication, 245 W Washington State University, 243 Weight reduction, 98, 100, 102 Weight Watchers, 100 Wellness Community, 89, 125, 132, 223- 224, 229, 230, 232, 236, 373, 385 West Clinic, 224-225 Wings Cancer Foundation, 224 Women’s Cancer Network, 117, 132 Women’s Healthy Eating & Living Study, 100 Women’s Intervention Nutrition Study (WINS), 100 Workforce. See also Education and training in biopsychosocial approaches; Health care providers forecasting supply, 387-388 licensed providers, 284-285 nonphysician providers, 285-287 size and diversity, 6, 108-109, 283, 284-288 volunteer and peer support component, 284, 287 Workforce Development Collaborative on Psychosocial Care During Chronic Medical Illness, 14, 18, 320, 321 WyJoCARE, 226 Y Y-ME National Breast Cancer Organization, Inc., 117, 125, 132, 138 Copyright © National Academy of Sciences. All rights reserved. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://www.nap.edu/catalog/11993.html Front Matter Summary 1 The Psychosocial Needs of Cancer Patients 2 Consequences of Unmet Psychosocial Needs 3 Psychosocial Health Services 4 A Model for Delivering Psychosocial Health Services 5 Implementing the Standard of Care 6 Public- and Private-Sector Policy Support 7 Preparing the Workforce 8 A Research Agenda Appendix A: Committee Member Biographies Appendix B: Study Methods Appendix C: Recommendations from Prior Selected Reports Index

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