Self-management support for patients with chronic disease: potential and questions

Helping patients help themselves works: but questions remain about what works and for whom

Health systems around the world are struggling to adapt to the increasing prevalence of chronic conditions in ageing populations. Chronic diseases are the leading causes of both death and disability in Australia, and are responsible for the larger part of its health costs.1 It is estimated that more than 11 million Australians have at least one of eight common long term conditions: arthritis, asthma, back pain and related problems, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes, and mental health conditions.1

In many chronic conditions, the individual’s own behaviour is an important influence on outcomes. Self-management support is defined by the United States Institute of Medicine as “the systematic provision of education and supportive interventions to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support.”2 Self-management is a key feature of models of chronic disease care, including the Kaiser Pyramid3 and the Chronic Care Model,4 and is seen as one approach to improving the effectiveness of health systems supporting people with long term conditions. A range of models of chronic disease self-management support (CDSMS) have been developed and evaluated5 since the pioneering work of health educators such as Lorig and colleagues6 first explored their potential. However, despite more than 15 years of research, questions remain about what works, for whom, and in which context.

In this issue of the Journal, Reed and colleagues7 add to the literature on CDSMS with their report of the results of a randomised trial of a clinician-led CDSMS program for older patients with multiple chronic conditions. The CDSMS program, based on the Flinders Chronic Condition Management Program, was delivered to patients recruited from general practices in South Australia by a health professional with qualifications in nursing or psychology who was not a member of the general practice staff. The investigators applied a structured intervention that encouraged and supported the setting of priorities and developing individual care plans, an approach that may help older people with multiple conditions manage complexity and their sometimes overwhelming or competing health and illness priorities.8 Multi-morbidity is more the norm than the exception in primary care, but evidence that CDSMS programs are effective for patients with multiple morbidities has been scarce. Reed and his colleagues make a useful contribution in this regard.

An ongoing problem with the CDSMS literature is the comparative value of generic and disease-specific programs. The former have appeal because they can be offered to people with a range of conditions and those with multiple morbidities, with less risk of burdening people with multiple programs. The study by Reed and his co-authors found that a generic program can indeed improve patients’ quality of life. This is consistent with the findings of the evaluation of the Expert Patients Programme in the United Kingdom.9 A recent systematic review, however, found that the small improvements in health outcomes and health service utilisation achieved could not be attributed to specific models of CDSMS.5

The study by Reed and colleagues is a valuable addition to the CDSMS literature, but a number of research questions it did not examine need further research. As with preventive medicine, the inverse care law often applies: people who most need systematic, chronic disease management and support for self-management are the least likely to receive it. The reported study relied on postal invitations and included only those who understood English; people from culturally and linguistically diverse backgrounds and those with lower health literacy may have been under-represented. The follow-up period for this study, as with many studies of this type, was short; it is important to look at long term effects and whether the improved quality of life is maintained.

Finally, we need evidence about what works in primary care, where most of the care for patients with long term medical conditions is provided. In our systematic review of interventions for patients with long term conditions, we found that self-management support programs delivered in primary care by primary care health professionals were effective in improving outcomes for patients with a range of diseases, but particularly for those with diabetes, heart disease, or hypertension.10 Embedding CDSMS programs in primary care is important for improving their reach and sustainability.11 As acknowledged by Reed and his co-authors, their study does not help in this regard, as the clinician providing CDSMS was not part of the primary care team. Their study nevertheless provides evidence that should inform the design of future interventions that could be delivered by members of the primary care team.