Exploring unmet needs in multiple sclerosis: Who needs what?

TitleExploring unmet needs in multiple sclerosis: Who needs what?
Publication TypeJournal Article
AuthorsAskew RL, Amtmann D, Weir VG, Johnson KL
JournalInternational Journal of MS Care
Comprehensive care and MS, Service delivery in MS

Background: The Greater Northwest Chapter of the National Multiple Sclerosis (MS) Society in collaboration with the University of Washington conducted a needs assessment survey to better understand the current needs of people with MS in Washington, Alaska, and Montana. Objectives: The purpose of this study was to analyze the responses to a question about services participants needed and could not get. Methods: 440 participants were 69% female, 92% Caucasian, 29% employed, 81% with some college or more, 41% living in a primarily rural area, and 32% with a progressive form of MS; average EDSS score was 4.7. Participants were asked to indicate which of 15 services listed they needed and could not get. The list included emotional support, accessible housing and transportation, physical activities/wellness programs, and help finding and accessing services. Latent class analysis was used to identify groups with differing unmet needs. Demographics and symptoms were also collected. Results: Four groups of respondents were identified: (1) high symptom burden, high unmet needs (20%, n = 88); (2) moderate symptom burden, unmet access and advocacy needs (9%, n = 39); (3) moderate symptom burden, unmet wellness and fitness needs (42%, n = 184); (4) lower symptom burden, low unmet needs (29%, n = 129). The first group reported high unmet needs for most services, had the lowest levels of education and income, and had the highest levels of pain, fatigue, depression, and anxiety. The second group indicated high unmet needs for accessible housing, transportation, and home health services; had a higher proportion of rural participants; and had a higher proportion of wheelchair users. The third group indicated needing help with physical health and wellness activities and reported slightly lower symptom levels, but, similar to group 2, was a little younger and mostly urban. Group 4 wanted more information about MS programs and services and help accessing services, but even those were endorsed at low levels. Group 4 tended to live in urban areas, had more education, and reported the lowest levels of symptoms. Conclusions: Each group had significantly different profiles of unmet needs. Care providers and MS support organizations should not assume that all individuals living with MS have similar unmet needs.


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