Background
Patients with Chronic Illness Could Use Some Help
Managing a chronic illness is time
consuming, complex, and difficult. Self-management involves "the tasks that individuals must undertake to live well with one or
more chronic conditions. These tasks include having the confidence to deal
with medical management, role management, and emotional management of their
conditions".2 Individuals with chronic illnesses may be asked to:
- Closely monitor symptoms.
- Respond with appropriate actions (adjust
medications, initiate call to a health care coach, schedule a doctor visit)
when symptom levels indicate a problem.
- Make major lifestyle changes (e.g., stop
smoking, reduce alcohol consumption, modify diet, lose weight, and increase
exercise).
- Adhere to medication regimens, some of which are
inconvenient or produce side effects.
- Make office visits for lab tests, physical
exams, and clinician consultations.
Patients often have difficulty performing these
tasks. For example, patients with diabetes should monitor their blood glucose
regularly, but only 60 percent of patients report that they self-monitor their
blood glucose at least once per day.3
Self-Management
Support Is More than Patient Education
Most individuals need help and
encouragement to actively participate in their care and successfully perform a
variety of tasks. So-called "self-management support" is "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."4
Although in the early days, diabetes
self-management support primarily focused on providing information, subsequent
research demonstrated that these educational interventions affected patients'
knowledge but not their self-care behavior. Patient knowledge came to be seen
as a necessary but not a sufficient contributor to behavior change.5 It was found that behavior related to self-management was affected by numerous
other factors such as social support, motivation, environmental obstacles,
emotional adjustment to diagnosis, self-management skills, self-efficacy, and
whether there was followup with the patient to answer any questions or address
obstacles that got in the way of the patient's self care.
Today, the emphases of self-management
support programs have moved away from pedagogical education with educational
content defined by health care professionals to an individualized approach that
addresses needs and concerns defined by the patient and his or her situation.
Patients may interact with a nurse, social worker, or other professional for
some of their treatment rather than relying solely on a physician. The
interaction is likely to include a strong element of coaching, with the goal of
educating and empowering the patient and increasing his or her self-efficacy
for self-management behaviors.5
Most programs draw on psychological models
of behavior change related to persuasion, skills training, provision of
information, stages of change, behavior modeling, goal setting, and problem
solving around barriers and difficulties. Such models include Social Cognitive
Theory with its focus on self-efficacy6;
the Transtheoretical Model7,8; the Health Belief Model9; the Locus of Control Theory10; and Personal Models.11-13
Self-Management Support Has Strong Advocates
Self-management support is strongly
emphasized by the Chronic Care Model, a framework for re-engineering
chronic care delivery systems proposed by Wagner and colleagues at the MacColl
Institute for Healthcare Innovation.14-17 The underlying principle of the Chronic Care Model is that improved outcomes
will result from more productive interactions between informed, engaged
patients and prepared, proactive, practice teams. Enhancements in
self-management support—bolstered by information support, delivery system
redesign, decision support, links with community services, and health system
support—constitute a core feature of the Chronic Care Model.
Existing disease management programs include a strong
emphasis on self-management support as well. The Disease Management Association
of America includes as one of six necessary disease management components
"patient self-management education (may include primary prevention, behavior
modification programs, and compliance/ surveillance)."18
Self-Management Support Can Improve Patient Outcomes and Control Costs
The current enthusiasm for self-management support is based
on a number of arguments, but chief among them are that it improves patient
outcomes and reduces, or at least controls, costs.
Evidence is emerging that self-management support programs
improve a variety of outcomes for different chronic conditions.19-28 Go to Appendix 1 for a bibliography of recent reviews of the research in this
area. Data also show that the patient's sense of engagement and self-efficacy
are strong predictors of outcomes.29 Quality improvement interventions that have attempted to improve the outcomes
of chronic care without a component that supports patient self-management have
not been found to affect patient outcomes.30 Many view self-management support as inherent to
good care processes. The inclusion of recommendations for self-management
support in a number of guidelines solidifies self-management support as a key
dimension of chronic care quality. Institutionalization of clinical practice
guidelines, quality reporting, and pay-for-performance programs encourage the
provision of self-management support.
Another goal of self-management support programs is to reduce health
care costs and workplace costs related to the reduced productivity of
chronically ill workers. Offering patients better support will help them stay
healthier, prevent expensive exacerbations and complications, and decrease
utilization of health care services, thereby reducing costs for providers,
insurers, employers, and other large purchasers of health care services, as
well as for the patients themselves. Similarly, some view self-management
support as a feasible approach to managing the workplace productivity of
chronically ill workers by reducing absenteeism (absence from work) and
presenteeism (reduced performance at work).
Figure 1 illustrates how a self-management
support program may affect both quality of care and costs. The structure of the
program and the support processes provided (A and B) influence the patient's
ability and motivation to improve his or her own care (C), which affect his or
her behavior (D1). The provider may react to the patient's behavior by
improving his or her own behavior (D2). As the patient and provider change
their behaviors, the patient's disease likely will be better controlled (E).
The patient will have fewer exacerbations and make fewer trips to the emergency
room or hospital. Many patients will be healthier as well (F), with increased
productivity and decreased utilization of medical services (G). A healthier
patient more in control of his or her chronic condition, leading a more
productive life and using health care services less, results in cost savings (H
and I).
Much Remains To Be Learned About the Effectiveness of Program Components
Evidence on the effectiveness of specific self-management
support program components is still sparse and diverse. Appendix 1 includes
reviews of specific components of self-management support. They provide some
evidence for the greater effectiveness of specific diabetes program components
such as self-monitoring of blood glucose,31 patient collaboration,19 regular reinforcement,19 additional contact time between the diabetes educator and the patient,21 computer-assisted patient education,32 and group-based education.33 Asthma reviews suggest that the self-management support programs that were most
effective utilized written action plans (individualized plans for
self-management), self-monitoring by patients,26 and interventions
customized to the individual patient.24 The reviews' findings on the
effectiveness of asthma action plans were not consistent,,27,34 but action plans were found to have a positive effect on the knowledge
and self-care behavior of people with chronic obstructive pulmonary disease.35 A quantitative review of computer-based interactive health communication
applications found evidence for their effectiveness.36
A meta-analysis of self-management support programs for
older adults investigated whether self-management support programs with
specific program characteristics were more effective than self-management
support programs without these characteristics. The program characteristics
examined included tailoring of interventions to patients' specific
circumstances, group setting, feedback to patients, psychological emphasis, and
medical care (receiving the self-management support intervention directly from
a physician or primary care clinician). While across-condition analysis
suggested a trend towards increased benefit of programs with these features,
the differences were not statistically significant. The authors discussed their
findings as follows:
We found sufficient evidence to
conclude that chronic disease self-management programs for older adults
probably result in clinically and statistically significant improvements in
blood glucose control and blood pressure control, although this evidence is
tempered by our findings of possible publication bias for these two outcomes.
However, supporters of chronic disease self-management programs need to
acknowledge that the evidence base regarding the necessary components of such
programs is very thin, which limits the ability to design programs for maximal
effectiveness and cost-effectiveness.23
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