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 Model^7,8; 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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