Unmet needs of adults with multiple sclerosis living in the northwest United States

TitleUnmet needs of adults with multiple sclerosis living in the northwest United States
Publication TypeConference Proceedings
Year of Conference2012
AuthorsJohnson KL, Amtmann D, Verrall A, Weir VG
Conference NameEuropean Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)
Conference LocationPoster Presentation at European Committee for Treatment and Research in Multiple Sclerosis (ECTIRMS), Lyon, France

Introduction: We hypothesized that people living with MS may have unmet needs for services and supports that have a negative impact on their perceived quality of life.  We conducted a survey of the National MS Society, Greater Northwest Chapter members to examine quality of life issues, generate symptom profiles and investigate unmet needs based on differing demographic information.

Methods: The telephone-based survey was completed by community-dwelling adults with MS (N=440) residing in Alaska, Montana, and Washington. A purposive sampling plan was used to target under-represented groups including those: with progressive MS, diagnosed within the last 5 years, living in a rural area and men.  Demographic, disease severity (EDSS), and information on access to health care, transportation, housing, and Internet use were collected. Symptom burden (fatigue, pain, anxiety, etc.) were measured using PROMIS and NeuroQol short forms and referenced to the US population means. Descriptive statistics were generated.

Results:  Survey participants included 69% women, 92% Caucasian, 81% with some college education or more, 27% employed, 41% living in a primarily rural area, 32% with a progressive form of MS, with an average EDSS score of 4.7 (SD: 3). Symptoms with greatest deviation from the US population means included fatigue 0.92 SDs higher than the population norm and levels of cognitive function 1.1 SDs below the population norm. Programs to improve physical activity, wellness, and emotional support led by a professional facilitator addressing specific goals were most frequently preferred.  Greater length of time since MS diagnosis and greater age were associated with lower preference for participating in supportive services. A latent class analysis using a set of questions about 15 services respondents needed but could not access revealed 4 groups differing in age, symptom burden, and wellness needs.

Conclusions: Providing services to improve quality of life within this group of diverse consumers is an immense challenge.  Identifying disparate groups based on demographic characteristics in a clinical setting and connecting patients with the services they prefer through consumer organizations or community groups could lead to higher quality of life and reduced symptom burden.  Supporting physical activity or wellness programs in a clinical setting through patient-centered care could also lead to better disease management and better health outcomes.


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