Been there done that: Time since diagnosis and multiple sclerosis.

TitleBeen there done that: Time since diagnosis and multiple sclerosis.
Publication TypeJournal Article
AuthorsJohnson KL, Weir VG, Verrall A, Stephens A, Henderson L, Amtmann D
JournalInternational Journal of MS Care
Management of activities of daily living in MS, Quality of Life in MS, Service delivery in MS

Background: Those who have been diagnosed with multiple sclerosis (MS) for a longer period have been found to adopt more successful coping and self-management strategies than the newly diagnosed. This group therefore may be less reliant on or interested in programs and services supported by health-promoting organizations. Objectives: To look at disparate needs of the newly diagnosed, those diagnosed in the last 5 years, and those who have been living and coping with MS for a longer time to inform individualized programming. Methods: Partnering with the Greater Northwest Chapter of the National Multiple Sclerosis Society, a crosssectional needs assessment was administered via telephone to adults with MS (N = 440). Underrepresented groups were targeted, including men, those with progressive MS, those living in rural areas, and those under 30 years old. Results: Mean (SD) duration of time living with MS was 14.6 (9.8) years; 17.5% of participants were diagnosed in the last 5 years. Chi-square tests show significant associations between being newly diagnosed and wanting to participate in programs about emotional/social support (P = .001), employment (P < .001), and physical activities (P = .003), in contrast to those who were not newly diagnosed. PROMIS measures show the newly diagnosed to have significantly higher anxiety (P = .003) and depression (P = .026) scores. Participants living with MS for 5 years or more are also significantly less likely to have attended a program or service in the last 2 years (P = .003). Conclusions: As MS is a characteristically progressive disease, differing needs present a unique challenge to serving people living in different stages of MS. Intervening early in the disease course (within the first 5 years), when individuals are more anxious and depressed, could set up a lifetime of successful self-management strategies. Targeting programs to the newly diagnosed in a variety of formats including in-person, group, and online would best address the higher level of need and interest of this group.

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