CMSC analyses patient self-management in Multiple Sclerosis

Consortium of Multiple Sclerosis CentersOct 26 2009

The Consortium of Multiple Sclerosis Centers (CMSC) released a white paper, written by a panel chaired by CMSC member Robert T. Fraser, Ph.D., of the University of Washington Rehabilitation Research and Training Center in Seattle, Washington, analyzing patient self-management in Multiple Sclerosis (MS) to develop recommendations for best practices aimed at improving patients' lives.

An initial literature review revealed that the basis for most self-management intervention techniques is the work of Kate Lorig, RN, Dr.P.H., and her colleagues at the Stanford Patient Education Research Center at Stanford School of Medicine in Palo Alto, CA, who divided patient responsibilities for their own care into three distinct areas: managing medical symptoms, role management (including behavior and daily responsibilities), and managing emotional aspects to their disease. The training involves development of key skill sets such as problem-solving, decision-making, resource utilization, forming patient-provider relationships, action planning, self-tailoring and self-management.

Studies in a similar self-management program in arthritis showed improvement in outcomes measured by reduction in pain and visits to the doctor, and higher self-efficacy, evident in as little as a month after implementation, and sustained for up to 4 years.

The full impact of MS on a patient's life is highly variable and unpredictable. Disease management requires a multidisciplinary approach from a team of trusted healthcare professionals. Patients need to be prepared not only for the changes brought on by the disease itself, but also for the challenges presented by disease-modifying therapies (DMTs) and rehabilitation. The CMSC white paper notes a limited base of study into self-management outcomes in MS patients, despite a tremendous need for such interventions, and reports that techniques are generally limited to patient education, without including the comprehensive range of skill-building and resource acquisition techniques.

Based upon the review of self-management outcomes in other disease states, and the understanding of the unique challenges presented by MS, the CMSC offered a number of recommendations to the MS healthcare provider for promoting self-management:

1. Raising awareness within the MS professional community
2. Assessing unmet needs in MS
3. Promoting diverse aspects of MS self-management research
4. Eliminating practice barriers
5. Developing evidence-based practice to encourage financial support
6. Promoting self-management via the CMSC-NARCOMS global registry
7. Leveraging healthcare plans to promote financial support strategies
8. Encouraging CMSC members to promote self-management among the broader MS community

Dr. Fraser has obtained a research and training grant to develop the "Self-Management Consensus Conference," to be held in April of 2010 in Seattle. The white paper is designed to stimulate interest in funding research for educational programming for people with MS. "The work in MS has chiefly been related to physical conditioning and we need a more holistic perspective on a wellness intervention," Dr. Fraser suggested.