Download Document

1
Index of Acronyms
ACoS
American College of Surgeons
ACS
American Cancer Society
ASCO
American Society of Clinical Oncology
CDC
Centers for Disease Control and Prevention
CoC
Commission on Cancer
CPGs
Clinical Practice Guidelines
IOM
Institute of Medicine
NAPCS
National Action Plan for Cancer Survivorship
NCCN
National Comprehensive Cancer Network
NCCS
National Coalition for Cancer Survivorship
NCI
National Cancer Institute
OCS
Office of Cancer Survivorship
QOL
Quality of Life
QOPI
Quality Oncology Practice Initiative
SCP
Survivorship Care Plan
2
Abstract
Cancer affects an estimated one in three individuals during their lifetime, either through their
own diagnosis or through that of a loved one (ACS Facts & Figures, 2015). Moreover, through
improved access to effective screening, diagnosis, and treatment, as well as an aging
population, impressive progress has been made in the number of cancer survivors. There over
14.5 million cancer survivors alive in the United States today, representing approximately 4
percent of our nation’s population. It is estimated the number of cancer survivors will reach 19
million by 2024 (ACS Facts & Figures, 2015).
Several cancer advocacy organizations and professional medical organizations have developed
survivorship guidelines and recommendations for quality of survivorship care. Taking a lead role
are organizations such as the American Cancer Society (ACS), the National Comprehensive
Cancer Network (NCCN), the Institute of Medicine (IOM), and American Society of Clinical
Oncology (ASCO). These organizations have worked persistently over the years to develop
standards and frameworks describing the essential components of survivorship care.
Cancer and cancer treatment affects a cancer survivor’s long-term health as well as their quality
of life (QOL), and many survivors will continue to face ongoing health risks. Transitioning from
active treatment to post-treatment care is critical to a cancer survivor’s long-term health. If this
care transition is not appropriately planned and coordinated, cancer survivors may be left
unaware of the long-term health risks they face and without a comprehensive follow-up plan of
action to help them move forward (Hewitt, Greenfield & Stovall, 2006). In the IOM’s seminal
report, From Cancer Patient to Cancer Survivor: Lost in Transition, the panel rightly noted that
“doctors alone, no matter how hard they are trying, are going to fall short if systemic issues
1
such as care coordination, patient-centered care delivery, financing, informatics, and
accountability for quality care are not enjoined” (Hewitt et al., 2006, preface xxiv ). The goal of
this paper is to research the most commonly used models of survivorship care delivery and
determine if these models meet the standards of delivering high quality survivorship care as
developed and articulated by the aforementioned organizations.
Introduction
The increasing number of cancer survivors presents a national challenge to develop and
institute models of care that can address the needs of survivors, and ensures appropriate
transition from active treatment to follow-up care. According to the Centers for Disease Control
and Prevention (CDC) the number of cancer survivors increased from 3 million in 1971 to 9.8
million in 2001 and 11.7 million in 2007 (CDC, 2007). This trend can be attributed to earlier
detection, improved treatments, and an aging population, and the 14.5 million survivors alive
today will likely grow to 19 million by 2024 (ACS Cancer Facts & Figures, 2015).
As part of a national movement to assure quality patient care, there has been increased
effort in the oncology community, and primary care more recently, to develop and implement
quality improvement measures (Mayer et al., 2015). Tools such as clinical practice guidelines
(CPGs), quality metrics, and performance improvement initiatives are used across healthcare
organizations and practices (Mayer et al., 2015). These measures are intended to assess quality
from the perspective of the patient-survivor, the provider, the healthcare organization, and the
entire health system. Additionally, two professional societies have developed cancer measures
that include survivorship specific metrics. ASCO, as part of its Quality Oncology Practice
2
Initiative (QOPI) measures quality cancer care and assesses adherence to guidelines across
academic and community practices. In addition, the American College of Surgeons (ACoS)
encourages adoption of patient-centered care through its Commission on Cancer (CoC) Cancer
Program Standards (Mayer, Shapiro, Jacobson, & McCabe, 2015). Although several
organizations have adopted cancer specific quality measures, survivorship has not formally
been included in their assessments (Mayer et al., 2015).
The focus on assuring quality cancer care, along with the recognition of cancer survivorship
as a distinct phase on the cancer continuum (Figure 1) presents an opportunity for leaders in
the oncology community and public health to create innovative solutions for the delivery of
high quality care for all cancer survivors (Mayer et al., 2015). Public health can play an
important role in this effort through utilization of at least one of its essential services: research
for new insights and innovative solutions to health problems. To help facilitate this purpose,
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 policies that address cancer issues (CDC, 2004).
An assessment focused on the commonly used survivorship care delivery models will be
conducted to make a determination about which have the potential to be most successful in
the effort to meet the cancer survivorship standards, as outlined by leading professional
organizations in the field of oncology and cancer survivorship. This analysis will be followed by
conclusions and recommendations.
3
Cancer Control Continuum
Prevention
Early Detection
Diagnosis
Treatment
Survivorship care
End-of-Life-Care
-Tobacco control
-Diet
-Physical activity
-Sun exposure
-Virus exposure
-Alcohol use
-Chemoprevention
-Cancer screening
-Awareness of
cancer signs and
symptoms
-Oncology
consultations
-Tumor
staging
-Patient
counseling
and decisionmaking
-Chemotherapy
-Surgery
-Radiation therapy
-Adjuvant therapy
-Symptom
management
-Psychosocial care
-Long-term followup/surveillance
-Late effects
management
-Rehabilitation
-Coping
-Health promotion
-Palliation
-Spiritual issues
-Hospice
Figure 1: Cancer control continuum
Source: Adapted from the National Cancer Institute figure on the Cancer Control Continuum (NCI, 2005)
4
History of Cancer Survivorship
The term cancer survivor entered the medical lexicon in 1986 when a small group of
individuals who founded the National Coalition for Cancer Survivorship (NCCS) met to discuss
the postcancer treatment challenges patients faced (Ganz, 2009). This group recognized early
on the importance of addressing the unmet needs of this growing population of cancer
survivors (Ganz, 2009). Traditionally, a cancer survivor has been defined as an individual who
lives beyond five years after diagnosis with no evidence of disease; survivorship is now being
described as extending from the time of diagnosis through the balance of a person’s life (ASCOCancer.net, 2015).
The first inroads made in the area of cancer survivorship were accomplished through a
grassroots effort led by survivors themselves, family members, and caregivers. National
organizations such as the ACS, the NCCS, the Lance Armstrong Foundation, and the Office of
Cancer Survivorship (OCS) advanced survivorship goals by conducting research and developing
recommendations to make policy change in the area of cancer survivorship (GW Cancer
Institute, 2014). In 1996, the NCCS published the report, Imperatives for Quality Cancer Care:
Access, Advocacy, and Action & Accountability. This report addressed, for the first time, the
mechanisms of health coverage and the quality of cancer care from the patient perspective
(NCCS, 1995). Also, during this time period the National Cancer Institute (NCI), OCS was
established (NCI, 2014). This organization’s stated mission is to enhance the quality of life of all
persons diagnosed with cancer and to minimize or stabilize the adverse effects experienced
during cancer survivorship (NCI, 2014). In 2004, the Lance Armstrong Foundation and the CDC
5
developed the report, National Action for Cancer Survivorship: Advancing Public Health
Solutions. This report described the need for a more effective and systematic delivery of public
health services for cancer survivors and identified the necessary elements of survivorship care:
building a research base to improve evidenced-based practice, training professionals in a way
that improves care, and designing comprehensive programs that are culturally sensitive and
patient centered (CDC, 2004). In 2005, the IOM published the seminal report on survivorship,
From Cancer Patient to Cancer Survivor: Lost in Transition (IOM, 2005). This report outlined the
essential components of survivorship care (Table 1).

Prevention of recurrent and new cancers and other late effects

Surveillance for cancer spread, recurrence, or second cancers, and psychosocial late
effects

Intervention for later conditions arising from cancer and its treatment

Coordination of care between oncology specialists and primary care providers (IOM,
2005).
The IOM report inspired leading cancer organizations to begin engaging in a national
discourse regarding the importance of survivorship care -- a discussion that continues today. In
2008, the IOM released another report, Cancer Care for the Whole Patient: Meeting the
Psychosocial Health Needs (IOM, 2007). This report highlighted concerns from cancer patients
that providers did not understand their psychosocial needs and did not consider psychosocial
support an integral part of their care. In 2010, the passage of the Affordable Care Act increased
access to health coverage, along with the elimination of pre-existing condition exclusion, which
further expanded cancer survivors’ access to healthcare (IOM, 2007). Finally, in 2013 the IOM
released another report, Delivering High-Quality Cancer Care: Charting a New Course for a
6
System in Crisis. In this report, the IOM argued that cancer care is not always meeting the
standards of being patient-centered, coordinated, or evidence-based (IOM, 2013).
Table 1: Essential Components of Survivorship Care
Care Component
Goal
Example
Screening for new cancers
(prevention)
Early detection of any new,
developing cancers
Surveillance for cancer
recurrence (surveillance)
Early detection of cancer
recurrence
Identification and
interventions for the
long-term and late
effects of cancer and its
treatment (Intervention)
Early intervention for therapy
or cancer related
complications when they are
most amenable to treatment
Health promotion strategies
(Intervention)
Reduce morbidity and
mortality in cancer survivors
Coordination between
oncology specialists
and
primary care providers
(Coordination)
Psychosocial support
(Intervention)
Improve communication and
education between providers
and patients
Regular mammograms for
young women treated with
chest radiation to allow for
early detection of radiationrelated breast cancer
Regularly scheduled
colonoscopies for colon
cancer survivors
Certain treatments can affect
the heart and put cancer
survivors at a higher risk for
heart ailments. These
individuals can take steps to
keep their heart healthy and
receive regular medical checkups to monitor heart function
Education provided regarding
the common factors that
increase cancer risk such as
inactivity and unhealthy diets
Survivorship care plan is
shared between providers to
promote coordinated care
Optimize psychosocial
functioning and improve the
quality of life of cancer
survivors
Services and support are
provided to cancer survivors
to help manage the effects of
cancer e.g. stress &anxiety
Adapted from IOM Essential Components of Survivorship Care (Hewitt et al., 2006) (Landier, 2009)
7
Key Issues in Survivorship Care
Long Term and Late Effects
A cancer survivor’s health care will be forever changed. Cancer survivors can face ongoing
complications such as fatigue, pain, sleep disturbance, peripheral neuropathy, and
cardiovascular issues (NCI, 2014). They may also experience psychosocial concerns such as
anxiety, depression, and fear of recurrence (NCI, 2014). Survivors can also face different needs
and challenges related to diet and nutrition, and many cancer survivors seek nutrition
information to optimize their health, reduce their risk of recurrence, and improve their quality
of life. Evidence is increasing that obesity is related to at least eight types of cancer and can
affect a patient’s survival, yet the link between obesity and cancer remains mostly unknown by
cancer survivors, as well as the general public (ASCO, 2015). Unfortunately, because of the
nonsystematic and non-personalized way follow-up care for survivors is often accessed
throughout our healthcare system, opportunities to intervene with these health issues are
often overlooked or missed (Hewitt et al., 2006).
Health Monitoring
The routine approach to disease prevention, screening, and treatment may not be
applicable to cancer survivors. Cancer and cancer treatment related changes could lead to
premature development of age-related medical health conditions, along with an increased risk
of developing these health issues (Trent, 2014). Additionally, the growing number of older
survivors presents a unique challenge to the healthcare system (AARC, 2013). The higher
incidence of coexisting comorbidities in the elderly may become further exacerbated because
8
of their treatment (Trent, 2014). The NCI Office of Cancer Survivorship estimates that 25% of
cancer survivors aged 65-74 years have 5 or more comorbidities and see as many as 12
physicians a year (Kappel, 2013).
Costs and Burdens to the Healthcare System
Although the rising survival trend is encouraging, it comes at a cost to the healthcare
system. The annual medical costs incurred by a cancer survivor are approximately twice the
cost of a patient without cancer (AARC, 2013). The cost of survivorship care is estimated to rise
along with the number of survivors, increasing costs 27 percent by 2020 (AARC, 2013). National
expenditures for cancer in the United States totaled nearly $125 billion dollars in 2010 and
could reach $156 billion in 2020 (NCI, 2015). These numbers underscore the enormous impact
cancer survivorship has, and will continue to have, on healthcare by placing increased burdens
on an already fragile healthcare system. These burdens are not only financial in nature but also
stress the system by overwhelming a healthcare force that is not adequately prepared to
manage the volume, as well as the complex needs, of this growing group of cancer survivors.
According to a 2007 workforce study commissioned by ASCO, it is projected that there will be a
significant shortage of oncologists in the United States by 2020 (ASCO, 2007). Demand for
oncology services is expected to rise 48 percent between 2005 and 2020. This increase in
demand is mainly attributable to an aging population and a growing population of cancer
survivors. However, due to factors such as retirement and a limited number of new oncologists
entering the field, the supply of those services is expected to grow by just 14 percent, resulting
in a shortage of oncologists estimated to be between 2,550 and 4,080 providers by 2020 (ASCO,
9
2007). Addressing this challenge will require a multifaceted approach that would likely include
nonphysician clinicians and primary care physicians having an increased role in survivorship
care.
Quality of Care and Disparities
Because cancer is a complex disease, requiring the expertise of many specialists
practicing in different settings, it rightly illustrates the “quality chasm” that exists within our
healthcare system and the inconsistencies that exist in the delivery of high quality healthcare to
everyone (IOM, 2001). To illustrate this point, a 2015 report from ASCO revealed there is an
uneven distribution of oncology specialists in rural areas. Only 5.5 percent of physicians
practice in rural areas, yet nearly 19 percent of Americans live in these areas (ASCO, 2015).
Even more concerning, the report also revealed that more than 70 percent of the U.S. counties
analyzed in the report had no medical oncologists. Additionally, inconsistencies in survivorship
care may be attributed to lack health insurance or restrictions on survivors’ healthcare policies
(McCabe et al., 2014). This health care gap and divide underscores the need for reform and
innovation in survivorship healthcare delivery (IOM, 2001) (Hewitt et al., 2006) (Trent, 2014).
Although many cancer survivors are experiencing improved survival and quality of life, there
remain persistent public health issues related to disparities and equity in healthcare, especially
in underserved populations.
Other issues
Cancer survivors face other personal and health issues related to cancer such as access
to information and resources, employment issues, and legal issues (Fairly et al., 2009). The
10
problems cancer survivors face in securing comprehensive and coordinated care are similar to
those faced by persons with chronic disease conditions requiring lifelong management, such as
diabetes and heart disease (Hewitt et al., 2006). People living with a chronic condition or
disease will generally need healthcare services from more and different healthcare providers
than needed by those without a chronic condition. Navigating across different systems can be
confusing and frustrating for patients and their families, often attributable to the disjointed and
myopic care that exists within the healthcare system (AHRQ, 2012).
Literature Review
In this literature review, guidelines and policy for survivorship care, public health
concerns regarding survivorship care, and the differences between frameworks of the most
commonly used care delivery models are discussed. Key features of each delivery care model
are highlighted to help inform the discussion. The review will look at each model through the
lens of the defined standards of high quality survivorship care derived from the leading
authorities on survivorship care such as the IOM. Additionally, a public health approach is
presented to demonstrate methods for linking the four domains of public health: surveillance
and applied research, communication, education, and training, programs, policies, and
infrastructure, and access to high quality care and services into survivorship care delivery
thereby creating a more robust survivorship care delivery system. Specifically, the purpose of
this paper is to research the most commonly used models of survivorship care delivery and
determine if these models meet the standards of delivering high quality survivorship care as
11
developed and articulated by the leading experts in the area of cancer survivorship, and explore
utilizing a public health approach in the context of survivorship care.
Methodology
A systematic review and appraisal of the literature for structure of services and a model
of survivorship delivery care was conducted through several internet searches and databases:
EBSCOhost, Pub Med, Google Scholar, Web of Science, and Lexis Nexis. Online academic Ejournals were also utilized. Reports and information from organizations such as the Centers for
Disease Control and Prevention, American Cancer Society, National Cancer Institute and the
American Society of Clinical Oncology were obtained directly from their site. Key words used:
cancer survivorship, survivorship, care model, delivery structure, survivorship guidelines,
survivorship care models, follow-up care for cancer survivors, public health. Articles chosen for
inclusion ranged from 2006 -2015.
Survivorship Policy & Frameworks
In 2013, both the ASCO and the NCCN offered recommendations and guidelines for
improving the quality of cancer survivorship care (McCabe et al., 2013). The NCCN presented a
framework for management of the possible long-term and latent effects of cancer and
treatment (NCCN, 2013). This framework focuses on eight major survivorship issues: anxiety
and depression, cognitive function, exercise, fatigue, immunization and infections, pain, sexual
function, and sleep disorders (NCCN, 2013). ASCO developed a comprehensive agenda to assist
the oncology community in the delivery of survivorship care (McCabe et al., 2013). Key features
of the agenda included:
12

Development of clinical guidelines to standardize the long-term follow-up care of
survivors

Evaluation of delivery care models to optimize the care transition process, expansion of
survivorship educational programs for those involved in the care of cancer survivors

Assessment of survivorship research and identification of gaps not addressed in
current studies

Advocacy for legislation to assure access to survivorship care and funding for
survivorship research (McCabe et al., 2013).
Additionally, survivorship care planning is recognized as a key feature in the patientcentered standards developed by the ACoS-CoC (ACoS-CoC, 2014). A survivorship care plan
(SCP) is critical for care coordination and for sharing a concise patient history that summarizes
the diagnosis, course of treatment, surveillance plan, and management for the effects of
cancer and treatment (Mayer et al., 2015). Collectively, these guidelines and recommendations
will help to pave the way, and ensure delivery of comprehensive and coordinated care to
cancer survivors, as well as provide the oncology community with the tools and resources it
needs to implement this care (McCabe et al., 2013).
Survivorship as a Public Health Concern
A public health effort to support cancer survivors is in line with the Healthy People 2020
objective to increase the proportion of cancer survivors who are living five years or longer after
diagnosis (CDC-Healthy People 2020, 2011). Although there are many public health initiatives
that work to prevent and control cancer, public health has not firmly established itself in the
area of cancer survivorship (Hewitt et al., 2006).
13
Public health has a role in influencing the healthcare system, providers, and policy
makers and emphasizing collaborative community based activities through utilization of the
essential services in public health, specifically: research for new insights and innovative
solutions to health problems, development of policies and plans that support individual and
community health efforts, mobilization of community partnerships to identify and solve health
problems, informing, educating, and empowering people about health issues, and linking
people to needed personal health services and ensure the provision of healthcare when
otherwise unavailable (Turnock, 2012). Public health is already playing a role in addressing the
challenges cancer survivors face through the CDC’s Division of Cancer Prevention and Control
(DCPC) (CDC-DCPC, 2015). The DCPC helps cancer survivors, especially the underserved at risk
for health disparities, by using an interdisciplinary approach to address their through applied
research, public health surveillance and data collection, education and health promotion (CDCDCPC, 2015).
It is important for public health to be a key contributor to the process of finding
solutions to survivorship care because of the tremendous impact cancer survivorship has on
population health in the United States. The years of life lost, the economic impact of lost
productivity, the costs related to illness and treatment, and the long-term effects of cancer and
cancer treatment on the quality of life of survivors all take a tremendous toll at the population
level (CDC-DCPC, 2015). Adopting a whole-population approach perspective to tackle these
issues and challenges would include utilizing a public health approach of assessment, action,
and evaluation (Stone, 2012). This would involve defining the health problem of cancer
survivorship, the nature, scale, consequences, and costs of the problem (Stone, 2012). This can
14
be achieved by conducting a needs assessment that involves the analysis and interpretation of
epidemiological data (Stone, 2012). The information collected is distilled down to plan and
create effective interventions that are targeted to meet the needs of cancer survivors (Stone,
2012). Finally, ongoing evaluation is conducted of all activities and interventions to determine
their impact and outcomes, strengths and weaknesses, and ensure continuous quality
improvement of services (Stone, 2012).
Assessment
The core function of assessment calls for public health agencies to regularly and
systematically collect and analyze pertinent data related to the health of the community and
make that data available to the public (Turnock, 2012). Data is collected via cancer registries,
tumor boards, and national and state surveys (Hewitt et al., 2006). Cancer registries such as
National Program of Cancer Registries (NPCR), and Surveillance, Epidemiology, and End Results
(SEER) Program, have information systems that collect and maintain data on each newly
diagnosed case of cancer in the United States (Hewitt et al., 2006). National surveys, such as the
National Interview Health Survey (NIHS) and the Behavioral Risk Factor Surveillance System
(BRFSS), provide information on health attitudes and beliefs that are useful in gaining a better
understanding of the issues related to the patient’s perspective on cancer survivorship (Hewitt
et al., 2006). In recent years cancer related questions were added to the BRFSS and additionally
states may choose to ask the questions on the Cancer Survivorship Module (CDC, 2014). In 2010
a set of questions specific to cancer survivorship were added to the NIHS (CDC, 2014). This
15
information provides much needed data on how cancer survivors are doing in the United States
and informs the development of policies and programs at the national level (CDC, 2014).
Interventions (Policies, Programs & Infrastructure)
The core function of intervention in public health is the mechanisms by which change
can be facilitated through interventions. Programs are the actual implementation of specific
interventions that address problems at the population level. Programs can be developed that
address the identified issues of cancer survivorship such as those medical or psychosocial in
nature. Interventions such as the NCI’s Cancer Information Service, (1-800-4-Cancer) where
trained cancer information specialists provide reliable, easy to understand, information on
cancer and cancer survivorship, as well as emotional support to callers (NCI, 2015). Policies
would include legislation, regulations, and guidelines that establish an environment conducive
for the implementation of survivorship programs and other changes specific to survivorship
(Hewitt et al., 2006). An example of a policy relevant to cancer survivorship is the Cancer
Survivors’ Bill of Rights. The Bill was written by a cancer survivor for cancer survivors and calls
public attention to the needs of cancer survivors (NCCN, 2009). Infrastructure is comprised of
the resources and facilities in place to address survivorship and includes components of the
healthcare and public health system. Infrastructure such as survivorship care plans help to
improve communication amongst providers by disseminating and sharing pertinent survivor
information, thus helping in the coordination and continuity of care between different
providers (Hewitt et al., 2006).
16
Assurance/Monitoring and Evaluation
The core functions of assurance, monitoring, and evaluation are key features in program
development. These processes assess program implementation, outcomes, and demonstrate
accountability. Effective evaluation includes the development of quality indicators for the
programs and services implemented (McCabe et al., 2014). Evidenced based guidelines serve as
the foundation from which quality metrics can be developed. The process allows care models to
be continuously assessed and improved upon, while also allowing comparison to different
survivorship models and programs. (McCabe et al., 2014) (Turnock, 2012). Metrics to consider
in comparing different models would include adherence to surveillance for cancer recurrence,
screening for the late effects of cancer and treatment, and coordination of care between
healthcare providers (McCabe et al., 2014).
The increased recognition of cancer survivorship as a distinct phase on the cancer care
continuum has led to the development of public health-related strategies and plans to address
the needs of cancer survivors (Fairly et al., 2009). In 2004, the CDC and the Lance Armstrong
Foundation developed A National Action Plan for Cancer Survivorship: Advancing Public Health
Strategies (NAPCS) (CDC, 2004). The objective of this plan was to provide a guide to public
health and cancer survivorship organizations working to address the needs of cancer survivors
(Smith et al., 2013). This plan identified, prioritized, and proposed strategies to address cancer
survivorship within the context of the four common domains of public health (Fairly et al.,
2009).
17
Standards of Survivorship Care
Along the cancer care continuum the greatest focus traditionally has been on the
diagnostic and treatment phases, and follow-up care has been mainly focused on surveillance
for cancer recurrence and management of acute symptoms (McCabe & Jacobs, 2012). With the
number of cancer survivors expected to rise, along with a more thorough understanding of the
issues survivors face post-treatment, groups such as LIVES-TRONG Survivorship Centers of
Excellence have been working to synthesize what is known about cancer survivorship and
establish standards for survivorship care (McCabe & Jacobs, 2012). Additionally, the IOM’s
seminal report: From Cancer Patient to Cancer Survivor: Lost in Transition provides a
comprehensive review of the long-term risks and models of care, and recommends delivery
care models designed to provide seamless coordination between providers (McCabe & Jacobs,
2012). However, implementation of these models has been a challenge for many organizations
and practices. Leaders in the field of cancer survivorship have acknowledged that putting these
care models into practice has been far more challenging than originally anticipated. Some
identified obstacles affecting implementation are poor communication and a level of distrust
amongst providers (McCabe & Jacobs, 2012).
These challenges can be addressed through a public health approach that emphasizes
assessed needs matched with effective interventions that are monitored and evaluated. In
addition, the aforementioned four core public health components can service as conduits
through which strategies can be developed to address the obstacles that are preventing these
recommendations being actualized. For example through the core public health component,
18
communication, education, and training, the obstacle of mistrust amongst providers can be
improved by educating healthcare providers about cancer survivorship from diagnosis through
long-term treatment and end-of-life care (CDC, 2015). The goal of such work is the
establishment of a system of services that enhance and create partnerships and instill trust
among private and public agencies. Implementing a systematic and coordinated survivorship
care broadly will require commitment to move past the lack of adoption of cancer survivorship
standards and towards collaboration and shared decision making from both public health and
healthcare providers (McCabe & Jacobs, 2012).
Models and Delivery Systems of Survivorship Care
How different survivorship care delivery models affect outcomes related to quality of
care for cancer survivors is a relatively unexplored area. Multiple models of survivorship care
delivery exist, and each of these models has some variation regarding the method by which the
care is delivered (National Cancer Survivorship Resource Center, 2008). There is no one “ideal”
model and many variables will determine which model is the best fit for any particular intuition,
or survivor population. Additional research in survivorship care models will be important to
help guide healthcare planning and policy decisions regarding implementation of survivorship
care (Howell et al., 2012). (ASCO, Models of long-term follow-up care 2015
http://www.asco.org/practice-research/models-long-term-follow-care ) (Table 2)
19
Models of Survivorship Care
Table 2
Model/Subtype
Examples
Academic/Oncology Based Care
Cancer Centers, community oncology practices
Disease/Treatment-Specific Survivor Clinic
Follow-up care for a common diagnosis, e.g. breast
cancer, Prostate, and bone & marrow stem cell
transplant.
All cancer survivors regardless of diagnosis or
treatment
General Survivorship Clinic
Community-Based Care
Primary Care Practices
Family Practice/Internal Medicine-Based
Survivors of adult and childhood cancers
Shared-Care
Shared primary and oncology care
Without transition
Survivor is seen periodically at the cancer center and
co-followed by PCP for primary care needs
Survivor is seen at cancer center for predetermined
amount of time, and then care is transferred to the PCP
who maintains periodic contact with cancer center.
With transition
Survivorship Care Systems of Delivery
Care Delivery Type
Example
Consultative

One-time comprehensive visit

Multi-visit
Ongoing
Integrated
Survivor attends a specialized follow-up program
for a one-time, comprehensive visit, receiving a
detailed care plan that is implemented by PCP.
Care is shared between oncologist and PCP.
Survivor is typically seen yearly by oncologist and
by PCP on an ongoing basis.
Survivor is followed in an academically based
specialized program for cancer survivors; care is
often NP or PA led or provided by a
multidisciplinary team.
Survivorship care is embedded within the oncology
care team; care may be ongoing, or transitioned to
PCP when deemed appropriate
20
Table 3: The most common used models of survivorship care & survivorship care criteria
Criteria-The
Screening Surveillance Identification Health
Psychosocial
essential
for
for
&
promotion support
components
new
recurrence
interventions strategies
of
cancers
long-term
survivorship
& late
care
effects
of
cancer/treat
ment
Model
Model
Primary
Definition
Professionals
Utilized
Coordination
between
oncology
specialists
and
primary care
providers
AcademicOncology
based
Organized by
Providers in X
X
X
X services
X services are -treatment/
academic
provided or provided or
type cancer
cancer
referrals are referrals are
resource
center
made
made
intensive
Shared-care Specialists
Primary Care X
X
X
X
X
x
work
Provider
inconsistent inconsistent
collaboratively
(PCP) &
with primary
Oncologists
care providers
Community Care provided
PCP and
X
X
X
X
X
by
PCP
and
various
or
not
-based
patient is
specialists
reported
referred to
various
specialists as
needed
Note X indicates a characteristic of this type model - indicates component is not characteristic of the model or was not reported
Data for table collected from:
Viswanathan et. al., (2014). Effective Health Care Program. Technical Brief #14 Models of Cancer Survivorship Care
Jefford et. al., (2011). Development and pilot testing of a nurse-led post-treatment and support package for bowel cancer survivors
21
Knowles et. al., (2007). Developing and piloting a nurse-led model of follow-up care in the multidisciplinary management of
colorectal cancer
Curcio et. al., (2012). Evaluation of a survivorship protocol: transitioning patients to survivors
Howell et. al., (2012). Models of care for post-treatment follow-up of adult cancer survivors
Analysis
Cancer survivorship is now solidified as a distinct phase of cancer care, but the process
of determining how to deliver survivorship care is one that continues to evolve. Research
continues to identify the type of care cancer survivors need, but there is a wide gap in the
delivery of that care to survivors. Additionally, because cancer survivors are a large and diverse
group, specific individual needs will vary considerably making delivery of care more challenging.
Multiple models of survivorship care delivery exist, each with considerable variation regarding
the type of model, the mode of delivery, and components of care. It is apparent from the
literature review that there is no one “right” model of care and models of survivorship care
tend to be highly idiosyncratic to the particular institution or practice (Viswanathan, Halpern,
Swinson, Berkin, Mayer, & Basch, 2014). This reviews looks at the three most commonly used
models of care delivery and assesses how well they comport with providing the IOM’s essential
components of survivorship care. While the IOM has detailed information regarding how these
different models should ideally operate, there was very little evidenced based research on how
these models were actually being utilized. It is apparent from my review of the literature that
the institution or practice will determine the type of survivorship care delivered, and it is
contingent upon available resources, personal, and patient population.
Table 3 represents the most commonly used models of survivorship care, the academiconcology based, shared-care, and community-based model (Viswanathan et. al., 2014). The
22
models were reviewed in this analysis to see if the IOM’s essential components of survivorship
were characteristic of each particular model. According to the literature I reviewed, screening
for new cancers, surveillance for recurrence, and identification and interventions for the longterm effects of cancer, was characteristic of the academic-oncology based model. Health
promotion strategies and psychosocial support either were not addressed or these services
were available through a referral process. Coordination between oncology specialists and
primary care providers was not characteristic of the academic-oncology model. The shared-care
models reviewed in this analysis demonstrated the components of screening for new cancers,
surveillance for recurrence; however and identification and interventions for the long-term
effects of cancer. Health promotion strategies and psychosocial support were all inconsistently
addressed. Coordination between oncology specialists and primary care providers was
consistently demonstrated in this model. The community-based model demonstrated the
components of screening for new cancers, surveillance for recurrence; however, and health
promotion strategies. Identification and interventions for the long-term effects of cancer and
psychosocial support were all inconsistently addressed. Coordination between oncology
specialists and primary care providers was not consistently demonstrated in the communitybased model.
The shared-care model, as implied, involves care shared and coordinated between two
or more healthcare providers in different settings or locations. In most instances, the primary
care physician will continue to provide routine healthcare for the cancer survivor. This is an
important aspect of this model because of the known increased risk survivors’ face in
developing premature age-related medical health conditions and their increase risk of
23
exacerbation of existing commodities due to treatment. Depending on the risk of recurrence,
the survivor may transfer back to exclusive primary care after a defined period. The primary
care provider may refer survivor back to the oncologist for specific problems or periodically.
The survivorship care plan will play a key role in communicating pertinent information between
providers. This model appears to have potential in improving the quality of survivor care
delivery because it involves more than one provider participating in the care of the cancer
survivor.
In the Academic-oncology based model, follow-up care is typically provided by the
treating oncologist. The advantage to this model is that it provides continuity of oncology care
for the survivor, but may result in a survivor’s primary care needs being unmet. In addition,
communication between healthcare providers is not a key feature of this model resulting in
vital healthcare information not being shared. This model of care may be best suited for those
survivors considered to be at the highest risk for recurrence.
Community-based model can be situated in a community healthcare system or private
practice. An advantage to this type of model is that it integrates a survivor back into primary
care and commonly there is an emphasis on wellness. However, providers in this type model
may not be knowledgeable about the long-term and late effects of cancer and cancer
treatment.
The IOM’s 2005 seminal report: From Cancer Patient to Cancer Survivors: Lost in
Transition describes and recommends survivorship care delivery models that are designed to
provide the essential components of survivorship with seamless coordination between
24
providers. Despite this landmark effort by the IOM, cancer survivors still find the healthcare
system to be unpredictable and fragmented.
Recommendations
The number of cancer survivors is expected to reach 19 million by 2024 (ACS
Cancer Facts & Figures, 2015). This number underscores the healthcare magnitude of cancer
survivorship and the importance of finding effective ways to address survivor’s needs. Seeking a
solution through a collaborative effort, using the capabilities of public health and healthcare,
innovative solutions can be created for this important issue. I have identified some key areas I
believe will require immediate focus.
Research
Research is needed to expand the evidence base in survivorship care so a definition of
optimal care delivery can be determined for all cancer survivors. Although the
recommendations from the IOM and other leading organizations form an important framework
for examining survivorship care, they are largely based on expert consensus, not evidencedbased research (Viswanathan et. al., 2014). Public health can be instrumental in this research
effort through its essential core function of: research for new insights and innovative solutions
to health problems. The National Institutes of Health (NIH) and CDC should make cancer
survivorship care delivery a priority and conduct research to help implement public health
policies that address this and other survivorship issues (CDC, 2004). Additionally, there is a need
for research on how to best structure the post-treatment care for cancer survivors. There is a
lack of guidance on the management of survivors with diverse cancer types, leading to a one25
size-fits-all approach for many survivors. It may be appropriate to develop a system where
cancer survivors are stratified based on risk of recurrence when determining the level of
survivorship care that is necessary. In an attempt to help clarify this ambiguity, the National
Action Plan for Cancer Survivorship (NAPCS) endorses, as part of taking a public health
approach in survivorship care, establishing, and supporting clinical practice guidelines for each
stage of cancer survivorship. This should become a priority of national cancer organizations
such as NIH and NCI.
Communication
Communication with providers and patients emerged as a key issue in my literature
review. When information is not shared amongst team members, providers may make medical
decisions based on a survivor’s incomplete medical history. Poor communication amongst
healthcare providers places the onus on the survivor to serve as the “authority” regarding
which team member received which piece of information. Ideally, networks should be created
in which responsibilities between PCPs, oncology specialists, and other healthcare providers are
effectively defined and shared. The survivorship care plan (SCP) will be an invaluable
communication tool in this regard. Helping to facilitate communication and disseminate
information amongst all providers on the healthcare team. Ideally, this SCP would be part of the
electronic medical record, with the capacity to be shared across different institutions and
organizations. Additionally, health care providers must work closely with survivors to develop a
survivorship care plan that also includes the non-cancer related medical care for any
comorbidities or age-related health issues.
26
Training & Education
It is clear that education and training on long-term and late effects of cancer and cancer
treatment will be essential to all those participating in the care of cancer survivors. This will be
an important priority because the literature has revealed that non-oncology providers lack
confidence in providing survivorship care. Likewise, some oncologists have expressed concern
regarding the ability of these other providers to provide survivorship care. Having providers
well educated about survivorship care is especially important because of the anticipated
shortage of oncologists. This predicted shortage will require that alternative approaches to
survivorship care be considered with expanded use of non-oncologist providers including
Advanced Practice Providers (NPs & PA s) as well as utilization of the shared care model. Most
non-oncology professionals will need education on survivorship care. Public health can play a
significant role in educating healthcare providers about survivorship care through the domain
of communication, education and training. This recommendation is in alignment with the NPCS
recommendation of providing survivorship education of healthcare professionals that covers
the span of diagnosis through end-of-life care. This education goal may be accomplished by
establishing educational forums on survivorship care together with professional organizations
such as the CDC, NIH, The American Academy of Family Physicians (AAFP), and the American
Association of Nurse Practitioners (AANP). Additionally, healthcare professionals throughout
local medical communities should receive survivorship care education through grand rounds
tumor boards or other appropriate venues. Finally, survivorship care education should be
incorporated into the professional training curricula of healthcare professionals like physicians
and nurses (Smith et al., 2012). Public health can also play a role in raising awareness and
27
educating cancer survivors, as well as the public, on the key issues of cancer survivorship by
providing access to consistent, scientifically valid survivorship healthcare information through a
centralized information resource center (Smith et al., 2012).
Conclusion
The lack of specific research in the area of cancer survivorship care delivery limits the
ability to make any determinations about the effectiveness of survivorship care models, and
how well they are meeting the standards of care set forth by the IOM and other leading
survivorship care organizations. Future research should focus on survivorship care models with
emphasis on issues such as how, when, and where survivors should be transitioned to
survivorship care. Public health entities can provide assistance and expertise in helping to
facilitate these objectives. It is certain that cancer survivorship care will not be a “one size fits
all” model because of the many factors such as risk of recurrence, availability of resources and
healthcare providers that will influence which model will be most effective in a given situation.
Regardless, survivorship care must be integrated into cancer treatment as part of a survivor’s
continuum of care. If not, survivorship care may be viewed as something “optional” by
providers and patients, and not as an essential component of cancer care.
It is the best interest of the United States to more effectively and systematically address
the issues of cancer survivorship. It will be essential to look at these issues through a public
health lens and utilize a public health approach to help find a solution to this complex and
challenging health issue. Cancer survivors and their increasing numbers, I believe, will prove to
be a sentinel event in our nation’s history and public health is uniquely poised to play a relevant
role in meeting the challenge of assuring optimal survivorship care to the public. Because
28
cancer survivorship imposes a tremendous individual as well as societal burden, and established
guidelines and frameworks are available to address the needs of survivors, a coordinated public
health effort is needed.
References
Agency for Health Care Research and Quality (AHRQ) (2012). Coordinating care for adults with
complex care needs in the patient-centered medical home: Challenges and solutions.
Retrieved from https://pcmh.ahrq.gov/page/coordinating-care-adults-complex-careneeds-patient-centered-medical-home-challenges-and
American Association of Cancer Research (AACR) (2013). AACR cancer progress report 2013.
Making research count for patients: A continual pursuit. Retrieved from
http://cancerprogressreport.org/2013/Documents/2013_AACR_CPR_FINAL.pdf
American Cancer Society (ACS) (2015). Cancer facts and statistics. Retrieved from
http://www.cancer.org/research/cancerfactsstatistics/index
American Cancer Society (ACS)(2015) Cancer Facts & Figures Retrieved from
http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc044552.pdf
American College of Surgeons: Commission on Cancer (ACoS-CoC) (2014): Cancer program
standards. Retrieved https://www.facs.org/quality-programs/cancer/coc/standards
American Society of Clinical Oncology (ASCO) (2007). Forecasting the supply of and demand for
oncologists. A report to the American Society of Clinical Oncology (ASCO) from the
AAMC center for workforce studies. Retrieved from
http://www.asco.org/sites/default/files/oncology_workforce_report_final.pdf
American Society of Clinical Oncology (ASCO) (2015). Models of long-term follow-up care.
Retrieved from http://www.asco.org/practice-research/models-long-term-follow-care
American Society of Clinical Oncology (ASCO) (2015). The state of cancer care in America 2015.
Retrieved from http://www.asco.org/practice-research/cancer-care-america2015/executive-summary
ASCO-Cancer.net (2015). About cancer survivorship: Defining survivorship. Retrieved from
http://www.cancer.net/survivorship/about-cancer-survivorship
29
Aziz, M., Roland, J. (2003). Trends and advances in cancer survivorship research: challenge and
opportunity. Seminars in Radiation Oncology, (13), 248-266.
Bahls, C. (2011). Health policy brief: Achieving equity in health, Health Affairs. Retrieved from
http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=53
Centers for Disease Control and Prevention (CDC) (2004). A national action plan for cancer
survivorship: Advancing public health strategies. Retrieved from
http://www.cdc.gov/cancer/survivorship/pdf/plan.pdf
Centers for Disease Control and Prevention (CDC) (2007). Cancer survivors-United States.
MMWR, 60,220-241.
Centers for Disease Control and Prevention (CDC) (DCPC) (2015). Cancer prevention and
control. Retrieved from http://www.cdc.gov/cancer/dcpc/about/
Centers for Disease Control and Prevention (CDC) (2011). Healthy People 2020. Retrieved from
http://www.cdc.gov/nchs/healthy_people/hp2020.htmm
Fairly, T., Pollack, L., Moore, A., Smith, J. (2009). Addressing cancer survivorship through public
health: An update from the Centers for Disease Control and Prevention. Journal of
Women’s Health, 18 (10), 1525-1531.
Feuerstein, M., Ganz, P. (2008). Health Services for Cancer Survivors: Practice Policy and
Research Springer NY NY
Ganz, P. (2009). Survivorship: Adult cancer survivors. Primary Care Clinical Office Practice, (36),
721-741 doi:10.1016/jpop.2009.08.001
Grunfeld, E., Earle, C., Stovall, E. (2011). A framework for Cancer Survivorship Research and
translation to policy. Cancer Epidemiology Biomarkers Prevention, 20(10), 2099-104.
GW Cancer Institute: The George Washington University (2014). Breast cancer survivorship in
Washington D.C.: A gap analysis and recommendations for action. George Washington
University Cancer Institute city wide cancer survivorship initiative. Retrieved from
http://smhs.gwu.edu/cancercontroltap/resources/breast-cancer-survivorshipwashington-dc-gap-analysis-and-recommendations-action
Hewitt, M., Greenfield, S., Stovall, E. (2006). From cancer patient to cancer survivor: Lost in
transition. Retrieved from http://www.nap.edu/download.php?record_id=11468#
30
Howell, D., Hack, T., Oliver, T., Chulak, T., Mayo, S., Aubin, M.,…Sinclair, S. (2012). Models of
care for post-treatment follow-up of adult cancer survivors: a systematic review and
quality appraisal of the evidence. Journal of Cancer Survivors, 6, 359-371.
Institute of Medicine (2007). Cancer care for the whole patient: Meeting psychosocial health
needs. Retrieved from http://iom.nationalacademies.org/Reports/2007/Cancer-Carefor-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx
Institute of Medicine (2005). Cancer patient to cancer survivor: Lost in transition. Retrieved
from http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-inTransition.aspx.
Institute of Medicine (2001). Crossing the quality chasm: A new health system for the twenty
first century. Retrieved from
https://iom.nationalacademies.org/~/media/Files/Report%20Files/2001/Crossing-theQuality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf
Institute of Medicine (IOM)(2013). Delivering high-quality cancer care: Charting a new course
for a system in crisis. Retrieved from http://www.iom.edu/Reports/2013/DeliveringHigh-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx
Kappel, M. (2013). It’s not the model that matters-still lost in transition. Journal of Oncology
Practice, 9 (3), 128-129.
Landier, W. (2009). Survivorship care: Essential components and models of delivery. Oncology
Nurse Edition, 23 (4), 46-53.
Mayer, D., Shapiro, C., Jacobson, P., McCabe, M. (2015). Assuring quality cancer survivorship
care: We’ve only just begun. American Society of Clinical Oncology ASCO Educational
Book, e583-e591.
McCabe, M., Bhatia, S., Oeffinger, K., Reaman, G., Tyne, C., Wollins, D., & Hudson, M.(2013).
American society of clinical oncology statement: Achieving high-quality cancer
survivorship care. American Society of Clinical Oncology, 5,631-640.
McCabe, M., Jacobs, L. (2012). Clinical update: Survivorship care-Models and programs.
Seminars in Oncology Nursing, 28(3), e1-e8.
National Cancer Institute (NCI) National Institutes of Health (NIH) (2014). Office of Cancer
Survivorship: Facing forward making a difference in cancer. Retrieved from
http://cancercontrol.cancer.gov/ocs/index.html
31
National Cancer Institute (NCI) (2015). About cancer-cancer statistics. Retrieved from
http://www.cancer.gov/about-cancer/what-is-cancer/statistics
National Cancer Survivorship Resource Center (2008). Policy/Advocacy-Expert panel workgroup
overview. Retrieved from
http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc031411.pdf
National Comprehensive Cancer Network (NCCN) (2013). Clinical practice guidelines:
Survivorship. Retrieved from
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#survivorship
National Comprehensive Cancer Network (NCCN) (1995). Imperatives for quality cancer care:
Access, advocacy, action, and accountability. Retrieved from
http://www.canceradvocacy.org/wp-content/uploads/2013/01/NCCS_Imperatives_896.pdf
National Comprehensive Cancer Network (NCCN) (2009). Self-advocacy-a cancer survivor’s
handbook. Retrieved from http://www.canceradvocacy.org/wpcontent/uploads/2013/01/Self_Advocacy.pdf
Oeffinger, K., McCabe, M. (2006). Models for delivering survivorship care. Journal of Clinical
Oncology, 24(32), 5117-5124.
Shad, A., Myers, S., Hennessy, K. (2012). Late effects in cancer survivors: “The shared-care
model”. Current Oncology Report, (14), 182-190.
Smith, J., Pollack, L., Rodriguez, J., Hawkins, N., Smith, T., Rechis, R., Miller, A.,…Stone-Wiggins,
B. (2013). Assessment of the status of a national action plan for cancer survivorship the
USA. Journal of Women’s Health, 18 (10), 1525-1531.
Stone, D. H. (2012). The Growing Global Public Health Crisis and how to address it. London, UK:
Radcliffe Publishing Ltd.
Trent, L. (2014). The state of cancer care in America, 2014: A report by the American Society of
Clinical Oncology. American Society of Clinical Oncology, 2 (10), 119-143. Retrieved
from http://jop.ascopubs.org/content/10/2/119.full
Turnock, B. J. (2012). Public health: What it is and how it works (5th ed.). Burlington, MA: Jones
& Bartlett Learning.
32
Viswanathan, M., Halpern, M., Swinson, T., Birken, SA., Mayer, DK., Basch, E. (2014). Models of
survivorship care. Technical brief 14. Agency for healthcare research and quality.
Retrieved from www.effectivehealthcare.ahrq.gov/reports/final.cfm
33