Integrating a Prospective Surveillance Model for Rehabilitation
Into Breast Cancer Survivorship Care*
Lynn H. Gerber, MD1; Nicole L. Stout, MPT, CLT-LANA2; Kathryn H. Schmitz, PhD, MPH3; and Carrie T. Stricker, PhD, RN4
At some point during or after treatment, breast cancer may be considered a chronic illness, presenting many choices for managing
the disease, its adverse treatment-related effects, other medical comorbidities as well as the biobehavioral burden of having a life-
threatening disease, even for individuals with potentially curable breast cancer. Health care models, such as the chronic care model,
the medical home, and the shared care model, provide a context for building survivorship health care models. Goals and characteris-
tics of recently proposed shared care models for cancer survivorship health care delivery closely align with the goals and concepts of
the prospective surveillance model (PSM) proposed elsewhere in this supplement to the journal Cancer. Given these similarities, along
with the growth and expansion of survivorship care models and impending mandates for delivery, there is merit to considering how
implementation of the PSM can be integrated with models of survivorship care delivery. The PSM model will likely face many similar
challenges and barriers that have impeded widespread dissemination of other survivorship models of care. There exist opportunities
to integrate lessons learned as well as to align efforts to achieve greater impact on the shared goal of improving health outcomes for
breast cancer survivors. Cancer 2012;118(8 suppl):2201–6. V
C 2012 American Cancer Society.
KEYWORDS: breast neoplasms, rehabilitation, surveillance, physical function, prospective surveillance.
An important new challenge facing health care professionals, patients, families, and their support networks results from
the significant progress made in prolonging survival after breast cancer treatment.1At some point during or after treat-
ment, breast cancer may be considered a chronic illness, and this presents many choices for managing the disease, its
adverse treatment-related effects, and other medical comorbidities as well as the biobehavioral burden of having a life-
threatening disease with chronic implications.2The myriad of medical and functional impairments faced by patients dur-
ing and after treatment can be challenging to manage and requires vigilance and resourcefulness on the part of the patient,
family, and provider along with a concomitant network of care to enable breast cancer survivors to return to and continue
ated with poor overall survival.4Models for health care delivery, cancer survivorship care plans, clinical practice
guidelines, and consensus on outcomes have been identified as mechanisms that may aid in streamlining a more compre-
hensive approachto qualitycare deliverythroughout the survivorship period.
In this supplement issue of Cancer, a novel prospective surveillance model (PSM) for rehabilitation after breast can-
cer treatment is introduced. This model proposes a standardized framework for interval assessment from the point of
breast cancer diagnosis through survivorship in an effort to promote early identification and intervention for physical
impairmentsthat mayimpede apatient’sfunctionalability.Considerationshould be givento integration of the PSMwith
emerging effortsin cancersurvivorshipcaredelivery.Thepurpose ofthisarticleis 3-fold: first,to reviewseveralhealthcare
models that have informed the burgeoning literature on cancer survivorship care to provide historic context; second, to
DOI: 10.1002/cncr.27472, Received: October 21, 2011; Accepted: November 7, 2011, Published online April 6, 2012 in Wiley Online Library
Corresponding author: Lynn H. Gerber, MD, George Mason University, Center for the Study of Chronic Illness and Disability, 4400 University Dr., MS 2G7, Fairfax,
VA 22030; Fax: (703) 993-2695; email@example.com
1George Mason University, Center for the Study of Chronic Illness and Disability, Fairfax, Virginia;2Breast Cancer Center, National Naval Medical Center, Walter
Reed National Military Medical Center, Bethesda, Maryland;3Division of Clinical Epidemiology and Biostatistics, University of Pennsylvania, Perelman School of
Medicine, Abramson Cancer Center, Philadelphia, Pennsylvania;
4Abramson Cancer Center, University of Pennsylvania School of Nursing, Philadelphia,
The articles in this supplement were commissioned based on presentations and deliberations at a Roundtable Meeting on a Prospective Model of Care for Breast
Cancer Rehabilitation, held February 24-25, 2011, at the American Cancer Society National Home Office in Atlanta, Georgia.
The views expressed in this article are those of the authors and do not necessarily reflect the official positions nor policies of the US Navy, the Department of
Defense, or the US Government.
The opinions or views expressed in this supplement are those of the authors, and do not necessarily reflect the opinions or recommendations of the editors or
the American Cancer Society.
*A Prospective Surveillance Model for Rehabilitation for Women with Breast Cancer, Supplement to Cancer.
April 15, 2012
provide a brief overview of current constructs for imple-
mentation and delivery of survivorship care plans; and
third, to explore a potential mechanism for incorporating
prospective surveillance for physical impairments related
to breastcancer treatmentinto thesemodels.
Health Care Models for Managing Complex
Chronic Health Issues
The concept of using a health care model for managing
complex chronic conditions is not a new idea. Models
have evolved as guiding constructs in health care and serve
to outline broad concepts and features that are essential to
providing comprehensive care for a wide array of disease
states.5-8The primary features of health care models are to
strive to achieve high-quality care as well as to promote
health maintenance, effective illness intervention, and
enhanced efficiency of care delivery.9,10Common key ele-
ments within a model serve to guide care delivery and
include describing which health care providers are involved
with care delivery, outlining the operational processes of
care delivery, and identifying anticipated clinical outcomes
In the United States, the concept of the medical
home was proposed in the 1960s as an approach to man-
aging the complex health care needs of special needs chil-
dren.11The concept has evolved as an effort to facilitate a
partnership with individual patients, their physicians, and
families to improve the delivery of health care.12The
National Committee for Quality Assurance has used the
medical home model to identify important tenants of
care, including appropriate provider involvement, opti-
mal process for patient-centered care, accurate and rele-
vant data capture, suitable communication strategies
between patients and providers, and ideal quality metrics
for outcomes assessment. This strategy identifies needed
components of care that specifically relate to chronic ill-
prehensiveness, coordination, continuity of care, and
Although implementation of this model is in its early
stages, and demonstrations tend to be focused toward
managing a single chronic condition (rarely inclusive of
cancer screening or oncology conditions), the medical
home model, with adaptation, may offer a construct for
The chronic care model (CCM), which was intro-
duced by Wagner et al in 1996, is another framework that
was designed to improve the management and health out-
comes of individuals with chronic illnesses and was
derived from the concept of the medical home.8Wagner
et al observed that effective interventions tend to include
ganization of practice systems and provider roles to align
with the protocol, improve patient education, and
increase access to expertise through specialty care pro-
viders; and greater availability and sharing of clinical
information among providers and patients.9Services and
treatments must be consumer and family centered.
Although the CCM was designed to address care at the
macrosystem level, this approach has spawned modifica-
tion of the model to emphasize 1 or another specific
aspect(s) of disease management. The CCM was per-
ceived as applicable to healthy aging: It was used as the
basis for the active aging model and has been adapted to
address mental illness through the behavioral model.15-17
as a chronic disease and can serve to address survivorship
issues. Furthermore, many CCM features are comple-
mentarytothe keycomponentswithinthe PSM.
Another model that was designed to manage com-
plex health issues is the shared care model. This model
relies on joint participation in care management between
primary care and specialty care physicians. It is informed
by an education program and information exchange that
is more robust than simply making referrals to special-
ists.18Through this approach, primary care providers and
specialists share joint responsibility for an individual’s
care and monitoring and freely exchange patient data and
share skills and knowledge to facilitate optimal care. It has
been used in a wide variety of settings (community, clinic,
etc) and diagnostic groups (eg, arthritis, diabetes, mental
illness, cancer).7,19Shared care models for collaborative
cancer care, to date, have been primarily theoretical and
have offered little in the way of recommended interven-
Studies have tested the clinical effectiveness of these
macrosystem models on various chronic disease condi-
tions, and most have demonstrated positive clinical out-
comes, including enhanced efficiency of care delivery,
improved disease management, and improved patient sat-
isfaction16,20-23; whereas cost-effectiveness studies have
demonstrated mixed results.24,25However, these health
care delivery models can succeed only when health care
providers are aware of the model’s clinical benefits and
are willing to actively collaborate with other providers
and enhance the extent of shared clinical duties in an
effort to optimize patient care.26-29Additional barriers to
implementation includeinsufficient resources, poor infra-
structure, and poor or lacking provider incentives to
April 15, 2012
Currently, to our knowledge, no model for care
delivery exists or has been studied related to the chronic
functional health issues of cancer survivors. Understand-
ing the evolution and extrapolation of these chronic dis-
ease models has relevance to cancer survivorship, because
it enables health care providers and patients to contextual-
ize a framework for ongoing surveillance. The PSM takes
a first step toward outlining a model for functional assess-
ment and ongoingcareforthebreastcancersurvivor.
Models for Managing Health Issues of Breast
Addressing the complexities of health care for long-term
cancer survivors is a relatively new phenomenon. In 1986,
the National Coalition for Cancer Survivorship was
formed as the first organization dedicated to addressing
cancer survivors’ issues.30In 1996, the National Cancer
Institute established the Office of Cancer Survivorship,
providing federal resources to target survivorship initia-
tives.31Only in the past decade have survivorship issues
received widespread attention: The President’s Cancer
Panel32was among the first efforts to focus on this period
in the cancer care continuum. The seminal 2006 Institute
of Medicine (IOM) report, From Cancer Patient to Cancer
Survivor: Lost in Transition, has played a key role in accel-
erating both research and clinical efforts to understand
and improve the quality of care and long-term outcomes
for a growing population of cancer survivors, including
the development of models of care to meet their needs.2
That report was preceded and informed by a 2003 IOM
report focused on the needs of childhood cancer survi-
vors.33The IOM identified 4 components of survivorship
care as ‘‘essential’’: 1) prevention of recurrent and new
cancers and other late effects; 2) surveillance for cancer
spread, recurrence, second cancers, and other late effects;
3) intervention for consequences of cancer and its treat-
ment; and 4) coordination between care providers to
ensure survivor needs are met. A concomitant goal is to
eliminate the fragmentation of care and gaps in how these
needs are addressed during the post-treatment survivor-
ship period. These goals align closely with those of the
PSM and encourage consideration about how such a
modelcanbe integratedwithsurvivorship caredelivery.
As a result of the IOM report, models of cancer sur-
vivorship care delivery have been described in greater
detail in the medical literature.10,34-36These efforts have
explored the possibilities of extrapolating both the CCM
and the shared care model to the cancer care continuum
by outlining cancer-specific, evidence-based interven-
tions, by delineating the support and resources necessary
to assist primary care providers in directing care, and by
enabling cancer survivors in self-management and health
promotion.8,11,18By using the shared care model as a tem-
plate, Oeffinger and McCabe34demonstrated how care of
cialist (oncology physician/nurse practitioner/advanced
practice provider) and the primary care physician (PCP).
The model promotes improved communication between
care providers and enhanced use of primary care and other
health care professional resources, and it provides a struc-
The shared care model also potentiates better use of
primary care resources for ongoing care. It is anticipated
thataprojected shortageofoncologists, compounded bya
rising demand for oncology services, will shift follow-up
cancer care to primary care domains.37,38Clear role delin-
eation will be needed for both oncology practitioners and
PCPs to streamline follow-up care of cancer survivors and
can be realized through the shared care construct.39,40
Furthermore, given theprojected imbalance betweenphy-
sician supply and service demand, it is critical to proac-
tively integrate a wide array of health care professionals
into cancer survivorship care. For example, a growing
number of centers use nurse practitioner-led models of
survivorship care.10,35,41-43Not only is it crucial to con-
sider how the PSM will tie into these diverse models of
survivorship care, but it is important to recognize that
the PSM offers the opportunity to integrate another
complement of professionals into the routine delivery of
survivorship care: specifically, physical and occupational
Although randomized trials in the setting of breast
cancer have demonstratedthat PCP-ledfollow-up care for
survivors is equivalent to oncology specialist follow-up
care with regard to identifying recurrence-related, serious
clinical events and improving health-related quality of
life, evidence also highlights disparities between these 2
provider groups regarding the provision of cancer care
and adherence to cancer care guidelines.44-46In addition,
uncertainty exists about the role of different providers in
(Fig. 1),2survivorship care plans (SCPs) have received the
most attention,48resource development,49-51and effort to-
ward integration into clinical practice.42,43,52-60SCPs and
mechanisms for their dissemination have become a central
clinical focus of oncology care providers.34,35,40,41,54,57,58,60
nication from the oncology team to the PCP at a recom-
mended set of specific time points to communicate an SCP.
Rehabilitation Model for Breast Cancer/Gerber et al
April 15, 2012
The SCP is a dynamic document intended to provide
comprehensive summaries of cancer treatments and their
inherent risks to both the primary care provider and the
patient, thus guiding follow-up survivorship care and
providing a tangible opportunity for integration with
The delivery of SCPs has become a quality cancer
care measure, like the American Society of Clinical Oncol-
ogy (ASCO) Quality Oncology Practice Initiative61; how-
ever, to date, payer and regulatory mandates for such plans
are pending. However, the American College of Surgeon’s
Commission on Cancer, which accredits approximately
80% of cancer centers in the United States, has proposed
holding accredited cancer centers accountable for the wide-
spread delivery of survivorship care plans by 2015.62Thus,
as clinical implementation of SCPs continues to increase,
Integrating the Prospective Surveillance Model
Into Existing Models of Survivorship Care
The goals and characteristics of survivorship care delivery
models closely align with the goals and concepts of the
PSM proposed in the accompanying article by Stout et al
in this supplement.63Given these similarities, along with
the growth and expansion of survivorship care needs,
increasingly limited resources, and impending mandates
for care delivery,62it is necessary to consider how the
PSMcan beintegratedwithmodelsof survivorship care.
An obvious symbiosis exists between these con-
structs, because the PSM provides many of the elements
noted as vital in the IOM conclusions, including educa-
tion regarding the likely course of treatment toxicities,
provision of ongoing health maintenance care and guid-
ance for healthy behaviors, description of periodic func-
tional tests and measures, education regarding possible
late and long-term effects of treatment, and referrals to
mous with the preferences for SCP content identified by
patients in qualitative studies.56,60,64-67Furthermore, the
goals also meet the needs cited by PCPs for concrete guid-
ance on signs and symptoms of late effects and resources
The model focuses on identifying symptoms and
functional issues amenable to rehabilitation and linking
these to interventions. Inclusion of the PSM involves inte-
gration of an in-person rehabilitation evaluation and pro-
be considered in ongoing patient assessment. This approach
enables an individualized plan for ongoing surveillance and
management of physical impairments best treated by reha-
bilitation specialists, and it also incorporates recommenda-
tions for physical activity and exercise. In a recent study of
SCPs delivered to breast cancer survivors across the LIVE-
STRONG Network of Survivorship Centers of Excellence,
it was reported that SCPs did not consistently incorporate
content on recommended healthpromotion behaviors,such
as exercise, nor were individualized referrals routinely incor-
porated.43,68Integration with the PSM, to a great extent,
would help to overcome these deficits by providing ongoing
Figure 1. The Institute of Medicine (IOM) recommendations for developing a survivorship care plan are listed (adapted from:
Hewitt M, Greenfield S, Stovall E, eds. Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Aca-
demies Press; 20062).
April 15, 2012
The PSM will face many challenges and barriers
similar to those experienced by other health care delivery
models, including provider awareness, resource availabil-
ity, infrastructure needs, and cost considerations, as noted
above. There are opportunities to integratethe PSM using
lessons learned from the historic perspective of other
health care delivery models as well as through aligning
efforts with the growing implementation of SCPs to
achieve greater impact. Integration of the PSM offers
added value to the patient and provider team, because it
adds a critical dimension to survivorship care planning
The model of shared survivorship care offers an
obvious platform for prospective surveillance for physical
impairments. The PSM functional assessment then
becomes an integrated part of the SCP, which is commu-
nicated to all members of the medical team and serves to
inform and promote follow-up care and communication
points between oncologists and primary care providers.34
Current ASCO templates for baseline documentation and
communication51also easily could be modified to incor-
porate baseline PSM assessments, interventions, and plans
Summary and Conclusion
Features of the survivorship care models presented here
bilitation toward the goal of improving the overall health
of breast cancer survivors. Prospective surveillance for
physical impairments needs to be an integrated part of the
care plan to enable identification of key clinical signs and
symptoms that require evaluation and treatment. The
PSM offers specific delineation of the sequelae likely to
contribute to functional decline and highlights tests and
measures for the identification of physical impairment
and recommendations for referral to specialty rehabilita-
Optimal survivorship care constructs are still being
to be developed and tested. Thus, it is an opportune time
for proponents of the PSM to collaborate with leaders in
survivorship care models to integrate these complemen-
tary approaches. Our shared goal is to develop the evi-
dence base to support clinical practice guidelines and
improve the medical and functional health of all breast
Support for this meeting and supplement was provided by the
American Cancer Society through The Longaberger CompanyV
a direct selling company offering home products including hand-
crafted baskets made in Ohio, and the Longaberger Horizon of
Campaign, which provided a grant to the American
Cancer Society for breast cancer research and education.
CONFLICT OF INTEREST DISCLOSURES
The authors made no disclosures.
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