265946 Disparities in Needs and Inequities of Services and Programs for People with Multiple Sclerosis

Tuesday, October 30, 2012

Aimee Verrall, MPH , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Kurt L. Johnson, PhD , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Dagmar Amtmann, PhD , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Virginia Weir, BA , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Introduction. Social determinants may contribute to the inequities or the unfair and avoidable differences in delivery of services and programs by consumer organizations. People living with multiple sclerosis (MS) may be marginalized not only by their chronic condition, but also by socioeconomic factors. This more vulnerable group of people living with MS may have different needs and face additional inequities as they seek help through consumer organizations, such as the National MS Society. Methods. A cross-sectional needs survey (n = 440) was conducted by telephone with community-dwelling adults with MS living in Alaska, Montana, and Washington as part of a needs assessment for the Greater Northwest Chapter of the National MS Society. Vulnerability was defined as satisfying any one of the following: MSPSS score of 4 or less (social support), receiving SSI, dual Medicare/Medicaid insurance, household income of $25k or less, or high school diploma or less. Results. Fifty percent of participants met the operational definition for vulnerability. The vulnerable group preferred to receive information by mail (not email) and to participate in programs in-person or by phone and expressed higher interest in accessible housing and transportation. In addition, the vulnerable group was more concerned about finances and wanted help finding services / programs in their local area. Conclusion. Consumer organizations supporting people living with MS should be cautious about relying too heavily on online / web-based dissemination and programs since these may not be effective in reaching key target audiences. Alternative outreach and service provisions should be available.

Learning Areas:
Assessment of individual and community needs for health education
Chronic disease management and prevention
Social and behavioral sciences

Learning Objectives:
List 4 possible symptoms experienced by people living with MS. Describe what services and programs are provided by consumer organizations which are not available (or reimbursable) through health care providers.

Keywords: Chronic Illness, Disability

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the research manager for a rehabilitation research and training center (RRTC) on Multiple Sclerosis. My public health interests are in disability as well as chronic conditions. Other scientific interests include hearing, social support, quality of life, and social determinants of health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.