Managing a chronic illness is a time consuming and complex process. Yet, often it is chronically ill patients themselves who are called on to manage the broad array of factors that contribute to their health. Individuals with diabetes, for example, provide close to 95 percent of their own care. Common sense suggests—and health care experts agree—that the chronically ill should receive support to help them manage their illnesses as effectively as possible.
Programs that provide this support—so-called "self-management support"—have been developed in recognition that treating chronic illness requires a new model of care. In 2003, the Institute of Medicine defined self-management support as "the systematic provision of education and supportive interventions by health care staff to increase patients' skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support." Self-management support programs are expected to reduce costly health crises and improve health outcomes for chronically ill patients with conditions such as asthma, cardiovascular disease, depression, diabetes, heart failure, and migraine headaches.
Many policymakers, providers, insurers, employers, and payers
such as Medicaid are enthusiastic about the new model. But a limited evidence
base related to these programs translates into uncertainty about programming
features and wide variation in the way they are designed, delivered, and
evaluated. This situation is challenging for providers who are developing
funding announcements for programs, negotiating contracts with program vendors,
or planning or managing their own self-management support programs.
The Agency for Healthcare Research and Quality (AHRQ) commissioned
this report to identify and examine the factors that purchasers and builders of
programs should consider when they are deciding on program components. The
report was prepared for AHRQ by the RAND Corporation. The authors conducted a
literature review and interviews with self-management support experts to
identify and evaluate the range of program models and their features. They also
identified measures that are used to judge the effectiveness and efficiency of
the programs. Key findings and recommendations for developing a
self-management support program are discussed here.
Self-Management Support Programs Aim to Change Patient Behavior
Self-management support programs assume a complex sequence
of effects. Developers expect these programs to change patients' behavior by
increasing the patients' self-efficacy and knowledge. Improved behavior is
expected to lead to better disease control which should, in turn, lead to
better patient outcomes and reduced utilization of health care services, particularly
preventable emergency room visits and hospitalizations, and ultimately to reduced costs.
This sequence of assumptions gives self-management support programs multiple objectives and multiple endpoints for evaluation. The pivotal objective, however, is to change people's behavior.
Basic Models Will Differ According to Program Position
An initial step in choosing or building a self-management
support program is to decide where in the health care system the program will
be positioned. Will it be managed and administered within the patient's primary
care setting or external to it? This distinction often has important
ramifications for the degree to which the self-management support is integrated
with other aspects of the patient's chronic care and thus who the players are,
the quantity and kind of data available to support it, and the nature of
administrative oversight and support.
Where a program is located may depend to some extent on
where in the health care system the purchaser or developer is located. A health
plan or employer whose eligible population is thinly spread across numerous
independent primary care settings might well consider an external model for
practical reasons. A medical group or independent delivery system is likely to
have more options for organizing the self-management support program either
within or outside the primary care setting.
Programs Should Provide Both Coaching and Patient Education
Other decisions about the program will pertain to factors such as:
- Content of the support.
- Patient population served.
- Information support.
- Protocols for how staff members are to provide the support.
- Staff training.
- Communication with patients.
- Communication between primary care physicians and self-management support staff.
For a program that seeks to change patient behavior, a key
underlying consideration is the need to include both supportive coaching
interventions and educational interventions as part of the program content.
While patient education is necessary, it alone is not sufficient. Rather than
being prescriptive or hierarchical, coaching interventions should be
patient-centered and tailored to the needs and concerns defined by the patient
and his or her situation. As coaches, the care managers therefore must have timely
access to information on patients' behaviors, priorities, skills, and needs. In
addition to information, they may need to provide such support as skills
training, collaborative decisionmaking and goal setting, problem solving,
motivation and confidence building, reinforcement, and followup.
Staffing decisions should take into account the need for
coaches who have the psychosocial skills to facilitate a patient's change in
behavior, as well as teaching skills. The information a coach needs for an
educational intervention may be disease-specific, but the core skill set needed
for coaching may be the same no matter what the disease or condition. Providers
and program developers might consider differentiating the self-management
support tasks and looking for people with different skills for different tasks.
Training and protocols for the care managers are important
program components. Training is especially important since many coaching skills
are not taught in professional schools such as nursing schools. Protocols bring
consistency to the way the program is delivered, provide a structure within
which care managers can apply their coaching skills, and enhance the managers' training.
Measures Are Needed to Evaluate the Success of the Program
The measures used to assess the success of the program
should align with the goals of the program. If the pivotal objective of
self-management support is to help patients change their behavior and manage
their disease, then evaluation should start with measures of patients' behavior
changes. For example, whether or not patients comply with their medication
regimen is a better indicator of a program's success than whether a physician
prescribes medication, since a change in provider behavior usually is not the
primary objective of self-management support. In addition, measuring only
patient visits to the hospital or the costs of various aspects of patient care
would be overly narrow, especially in the short term.
Likewise, the measurement timeframe needs to match the
timeframe in which the self-management support objectives can be attained. Some
changes happen sooner, some later. For example, patient self-efficacy and
behavior need to change before reduced hospitalizations and costs can be
realized. To evaluate the success of a program based on hospitalizations and
costs before evaluating and improving patient self-efficacy and behavior might
result in premature and unnecessarily negative results. Match measurement to
the time course in which change is happening, with longer, realistic time
allowances for the long-term outcomes.
The best approach is a portfolio of measures that address the different, sequential objectives of self-management support. This approach should include measures of whether patients get better at managing their disease and allow sufficient time to assess if patients' changed behaviors lead to the hoped-for long-term outcomes.
Finally, it is important to carefully consider the potential for bias when selecting measures of patients' changed behavior. Whenever possible, rely on information that is directly available from an objective source (e.g., pharmacy records) rather than a patient's own report. When it is necessary to rely on patient self-report, try to avoid collecting this information through the coaches (some patients may exaggerate their good behavior in an effort to please their coaches) or only from those who agreed to participate in the program (to avoid selection bias).
The research evidence base for the design of self-management support programs and their evaluation is very limited, and more and better research in most of the areas discussed above is sorely needed. Further research will provide critical guidance to those who are struggling to design optimal self-management support programs, to change behavior, and to improve the health of the chronically ill.
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