What is the State of Patient Self-Management Support Programs? An Evaluation
What is the State of Patient Self-Management Support Programs?
Chronically Ill Patients Could Use Some Help
Managing a chronic illness is time consuming, complex, and difficult. "Self-management" can be defined as "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" (Adams 2004). 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, diabetics should monitor their blood glucose regularly, but only 60% report that they self-monitor their blood glucose at least once per day (Centers for Disease Control and Prevention 2006).
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"(Institute of Medicine 2003).
While early 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 changing behavior (Krichbaum et al. 2003). Self-management behavior was found to be 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 follow-up 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 healthcare 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 (Krichbaum et al. 2003).
Most programs draw on psychological models of behavior change related to persuasion, skills training, providing information, stages of change, modeling of behavior, goal-setting, and problem-solving around barriers and difficulties. Such models include Social Cognitive Theory with its focus on self-efficacy (Bandura 1977); the Transtheoretical Model (Prochaska et al. 1992; Prochaska et al. 1997); the Health Belief Model (Bond et al. 1992); the Locus of Control Theory (Tillotson et al. 1996); and Personal Models (Hampson et al. 1995; Glasgow et al. 1997; Skinner et al. 2000).
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 (Improving Chronic Illness Care, 2007; Wagner et al. 1996a; Wagner et al. 1996b; Wagner 1998). 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, supported 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)" (Disease Management Association of America 2007a).
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 (Norris et al. 2001; Weingarten et al. 2002; Norris et al. 2002; Warsi et al. 2004; Chodosh et al. 2005; Guevara et al. 2003; McAlister et al. 2004; Gibson et al. 2005; Gibson 2003; Bravata DM 2007). (The Appendix provides 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 (Bandura 1998). 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 (Renders et al. 2001). 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 healthcare 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 will likely 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 Relative Effectiveness of Various Program Components
The evidence on the effectiveness of specific self-management support program components is still sparse and diverse. The Appendix includes some 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 (Sarol et al. 2005), patient collaboration (Norris et al. 2001), regular reinforcement (Norris et al. 2001), additional contact time between the diabetes educator and the patient (Norris et al. 2002), computer-assisted patient education (Balas et al. 2004), and group-based education (Deakin 2005). 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 (Gibson et al. 2005), and interventions customized to the individual patient (Guevara et al. 2003). The reviews' findings on the effectiveness of asthma action plans were not consistent (Gibson et al. 2003; Toelle 2004), but action plans were found to have a positive effect on the knowledge and self-care behavior of persons with chronic obstructive pulmonary disease (Turnock 2005). A quantitative review of computer-based interactive health communication applications found evidence for their effectiveness (Murray et al. 2004).
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 (Chodosh et al. 2005).