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

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.