Can't See the Forest for the Care Plan:
A Call to Revisit the Context of Care Planning
- Corresponding author: Carla Parry, National Cancer Institute, National Institutes of Health, Behavioral Research Program, Division of Cancer Control and Population Sciences, 6130 Executive Blvd, Executive Plaza North, Room 4085, Bethesda, MD 20892-8336; e-mail: carla.parry@nih.gov.
+ Author Affiliations
In its 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition,”1
the Institute of Medicine (IOM) provided suggestions for improving
transitional and follow-up care for the growing population
of cancer survivors. The IOM recommended that all
patients completing primary treatment for cancer be provided with a
comprehensive
treatment summary and follow-up care plan, together
referred to as a survivorship care plan (SCP).1,2 The IOM recommended that the SCP be reviewed with the patient during an end-of-treatment consultation, in the hope that use
of an SCP and consultation would foster improved care coordination and communication.1
The IOM panel acknowledged the lack of an evidence base for
survivorship care planning but concluded that “some elements
of care simply make sense—that is, they have strong
face validity and can reasonably be assumed to improve care unless and
until evidence accumulates to the contrary.”1p5 However, the IOM report went on to call for health services research to assess the impact, cost, and acceptability of SCPs
with regard to patients and providers.1
Nearly 7 years later, evidence regarding the impact of SCPs on care delivery and survivor outcomes remains limited and is
primarily characterized by descriptive, exploratory, and pilot studies.3–9 Grunfeld et al5
conducted the single published randomized controlled trial testing the
efficacy of care planning in care coordination and
patient-reported outcomes, which showed no effect.
However, the validity and generalizability of the 2011 study findings
have
been questioned because of concerns about the
appropriateness of the primary outcomes, aspects of the research design
that
may have affected results, and difficulty translating
the findings from Canada to the United States.10–14
Another shortcoming of existing research on survivorship care planning
is that it has not adequately addressed the diverse
sociocultural backgrounds that survivors bring with
them to the care context. Implementation problems compound the
challenges
posed by the lack of a robust and compelling evidence
base. The development and delivery of SCPs is currently a
resource-intensive
activity that lacks adequate integration with
technology platforms, clear reimbursement pathways, and clarity
regarding who
is responsible for generating and communicating the
care plan to patients and providers.4,15,16
Despite these limitations, the American Society of Clinical Oncology
has recommended adoption of chemotherapy treatment summaries
as a 2008 Quality Oncology Practice Initiative
indicator, and the American College of Surgeons Commission on Cancer has
called
for implementation of SCPs by January 2015.17,18
The flurry of commentaries after the publication of the results of Grunfeld et al5 generated a lively dialogue about next steps and urged us not to jump to conclusions about the efficacy or feasibility of
survivorship care planning until further research was generated.10–13
To that end, researchers have called for studies of survivorship care
planning to determine what information should be provided
in SCPs and to whom, develop appropriate metrics to
evaluate the efficacy of SCPs, and identify outcome constructs and
measures
more congruent with survivorship care planning
intervention content and targets.12,13,15 Proposed outcomes for investigation include health and functional outcomes, lifestyle changes, under- and overuse of health
care, and acquisition of support for unmet needs.7,10,12
Call for Context
We agree that if SCPs are to become a
standard of care, their efficacy and viability in real-world settings
must be thoughtfully
and rigorously evaluated. But questions remain.
What constructs should be evaluated? With which measures? What outcomes
can
reasonably be expected of survivorship care
planning interventions? We argue that problems with the nascent science
in this
area stem from the conceptual divorcing of SCPs
from the context of care and specifically from the process of care
planning.
In short, we have confused care plans with care
planning. By focusing on the document rather than the processes and
models
of care in which SCPs are imbedded, we have
taken care plans out of context and lost sight of the proverbial forest
for the
trees. Care plans exist in the context of
processes of care, models of care, and technologies that can aid and
impede care
coordination and communication. Much like
electronic health records, care plans are vehicles for communication and
coordination
of care, nothing more. We cannot expect a
document to do the work of a process, and we certainly cannot expect it
to fix a
flawed process. It is only through revisiting
the context of care plans that we can improve the quality of cancer
follow-up
care.
Toward a Conceptual Framework
Without a guiding framework, problems
are likely to persist in identifying relevant constructs and measures
that map onto
survivorship care planning activities. The
pathways through which we might hope care plans would affect patient,
provider,
and systems outcomes need to be described. The
scant research literature, in conjunction with IOM goals and recommended
content
for SCPs, suggests a conceptual framework
incorporating the constructs shown in Figure 1. Although not intended to be definitive or exhaustive, we propose the framework described here as a starting point for building
testable scientific models in care planning research.
Fig 1.
Conceptual framework for survivorship care planning research. QOL, quality of life.
In the concentric circle on the left
side of the model, care plans are shown imbedded within the models of
care, processes
of care, and technology platforms that would
ideally support the generation and sharing of SCPs. Models of care
include the
ways in which care is organized, the
stakeholders involved in care, and the role expectations associated with
those individuals.
Processes of care are distinguished from models
of care by the focus of the former on how various stakeholders operate
and
interact within the care system. Both models and
processes of care should outline and attend to the settings and
providers
(eg, primary care, oncology, and other
specialties) involved in the delivery and coordination of survivors'
care. Technology
platforms include, but are not limited to,
electronic medical records, electronic and mobile health applications,
and social
media. The individuals involved in the
generation and use of SCPs (patients, family members, and an array of
health care providers)
are represented in the middle ring of the
circle. The intertwined circles to the right of the concentric circle
represent
the two intermediary constructs through which
the IOM postulated survivorship care planning might affect survivor- and
system-level
outcomes: care coordination and communication.
The rectangles to the right represent potential short-term and long-term
outcomes.
The first column holds three groupings of
potential short-term outcomes of care planning: adherence to follow-up
care protocols
and provider management or self-management of
late and long-term effects and comorbid conditions; health care resource
use;
and organizational effects of care planning,
such as staff time and financial resources associated with the
generation, sharing,
and updating of care plans. The far right column
includes two potential groups of long-term outcomes: physiologic and
psychosocial
morbidity and cost implications (savings or
losses) of care planning for patients, providers, systems, and payers.
It is not
yet known whether the initial expenditures
associated with the creation and delivery of SCPs will be balanced by
long-term
gains in communication and care coordination or
if such gains will translate to net cost savings.
Developing an Evidence Base
The proposed framework facilitates the
examination of survivorship care planning using diverse methodologies
and speaks to
the need for studies that will identify models
and processes of care that may promote effective survivorship care
planning
and evaluate the impact of survivorship care
planning on survivor-, provider-, and system-level outcomes. However,
lack of
standardization and consensus regarding the
content of SCPs and of congruence with IOM-recommended components poses a
challenge
to the interpretation, comparison, and
application of results.15
Therefore, studies should carefully describe the content and method of
generation of the SCP and processes associated with
the care planning intervention so that results
can be interpreted in a meaningful way. Development of performance
measures
of quality care could also aid in assessing
congruence with recommendations and evaluating outcomes of survivorship
care planning.1
Because of the exploratory stage of the
science, the existing survivorship care planning literature is
characterized largely
by cross-sectional studies. Longitudinal studies
are needed to understand the downstream effects of care planning on
survivors,
providers, and health care delivery systems.
Comparative designs are needed to assess whether care planning provides
added
value beyond usual care. The optimal unit of
analysis to be used in comparative designs is not yet clear and may
include the
patient, clinician, hospital, and health care
system or have a multilevel focus. Both observational and experimental
studies
of the efficacy and implementation of care
planning models and interventions are needed.
At present, survivorship care planning
practices vary greatly. Future research should seek to describe the
setting in which
care planning occurs, the participants in the
care planning process, and the structures and processes in place to
support
quality transitional and follow-up care. Studies
documenting the organizational context and factors that promote or
inhibit
efficacious survivorship care planning are
needed, including studies that explore how reimbursement and insurance
practices
affect the use of SCPs now, and how they will in
the future, under the Affordable Care Act and accountable care
mandates.
It is likely that not all patients require the
same degree and intensity of follow-up care and/or survivorship care
planning.
Risk assessment and stratification may be useful
strategies for tailoring the content of SCPs and determining the
frequency
with which SCPs are revised and revisited with
patients. Such strategies need to be evaluated for efficacy. Future
research
is also needed to understand how sociocultural
diversity may influence survivorship care planning. Do populations
differ in
their preferences for how information is
provided or shared? Are survivors from different sociocultural
backgrounds more or
less likely to receive appropriate and timely
follow-up care? How can providers effectively deliver survivorship care
planning
for individuals from diverse backgrounds? These
and other questions remain to be answered.
Research is needed exploring the
optimal means of using technology to support survivorship care planning.
Researchers and
clinicians are examining how best to use
electronic medical records and extant data repositories, such as state
cancer registries,
to more efficiently abstract and package data
needed for SCPs.19,20 Other efforts are evaluating how technology may facilitate self-management of health after cancer.21
Going forward, research will be needed on ways technology can support
the use of accessible SCP formats that are easily updatable
by a variety of end users (care providers,
patients, family members, and so on) and facilitate survivor adherence
to follow-up
care recommendations.
Further refinement of metrics and
development of consensus on measurement are necessary to support
research evaluating the
efficacy of survivorship care planning. The
National Cancer Institute Grid-Enabled Measures online tool provides a
means for
dialogue and building consensus in this area. It
contains a dynamic library of 124 measures relevant to the evaluation
of
survivorship care planning, organized in domains
such as quality of care, care coordination, and physical and
psychosocial
outcomes.22 Preliminary results of the Grid-Enabled Measures initiative suggest that measurement of patient-level outcomes is fairly
well developed, but metrics are less well developed at the provider and system levels.
Finally, it is important that research
in care planning be patient centered. This will necessitate
understanding which questions
are important to cancer survivors and
understanding whether survivors feel that care planning strategies
render them better
prepared to manage their health and navigate
their care in ways that are consistent with their needs and preferences.
Do survivors
understand what to expect after treatment? Whom
to call, when, and for which problems? What follow-up care to seek and
from
which providers? These may be difficult
questions to answer in a health care context unclear about provider
roles and responsibilities
and reimbursement mechanisms to support
follow-up care. Nonetheless, these and many other questions remain to be
answered.
The question raised by the IOM report was
broader than evaluation of SCPs; the question was how best to deliver
high-quality
transitional and follow-up care to cancer
survivors. This is the question we should seek to answer with our
science on survivorship
care planning. This is the question that allows
us to keep sight of the forest as well as the trees and improve outcomes
for
all cancer survivors.
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Manuscript writing: All authors
Final approval of manuscript: All authors
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