Report from the first multiple sclerosis self-management research conference.

Background: Health education and disability management research supports the efficacy of self-management programs related to health outcomes of individuals with chronic illness. The emphasis is on actual patient self-management activity versus health systems intervention or basic patient education (Barlow et al., 2002). The primary tasks in self-management are generally threefold: medical symptom management, community role management, and emotional management. Across a number of studies, the Arthritis Self-Management Program (Lorig et al., 2005) and the Chronic Disease Self- Management Program (Lorig et al., 2005) have shown significant health and disability outcomes within 1 month through 4 years post-intervention. The self-management research in multiple sclerosis (MS), however, has been very limited (Devins & Shnek, 2000) and more narrowly focused to a degree on health and physical functioning (Stuifbergen et al., 2003), reduction of depression (Mohr et al., 2000, 2005), or energy conservation (Finlayson & Holberg, 2007). Objectives: Due to the lack of comprehensive self-management research in MS and a number of unanswered questions in the generic self-management research, funding was secured from the Consortium of Multiple Sclerosis Centers and National Institute on Disability and Rehabilitation Research (NIDRR) to sponsor an MS self-management research conference involving 50 international self-management experts and MS psychosocial researchers in November 2010 in Washington, DC, in order to set an optimal research agenda. Methods: International conference, expert presentations, and workgroups format. Results: This presentation initially summarizes the “take-home points” from the international speakers on generic disability self-management research concerns (eg, ethics, measuring program outcomes, consumer-generated programs) and the unique concerns and efforts within the MS population. Of particular importance are the recommendations from the day’s four research workgroup meetings relating to self-management techniques, methodologies, impact measurement, and translation to consumers. Conclusion: Key considerations and innovative research directions are summarized in order to move the self-management field forward in MS.