Perceptions of people with multiple sclerosis on social determinants of health: Mixed methods.

OBJECTIVE

To explore the social determinants of health (SDOH) in people with multiple sclerosis (MS) with SDOH, elucidating the SDOH variables of highest salience in this geographical region.

METHODS

Focus groups and a structured survey of Massachusetts residents with SDOH and a diagnosis of MS were conducted by a neurologist and staff, December 2022-July 2023, via Zoom™. Twenty-one consecutively-recruited, convenience-sampled adults participated in four groups. A thematic inductive approach was taken.

RESULTS

Participants (average age 45 years old; average time since MS diagnosis 13.7 years; 14 cisgender female, 1 transgender female, 5 cisgender male, 1 non-binary; 33 % white, 57 % black, 5 % Asian, 5 % other; 18 % Hispanic/Latinx; modal response of 5 SDOH) identified the following key SDOH: (1) race and ethnicity, related to (a) diagnostic delays in MS, (b) limited familiarity with MS and its etiology, and (c) value of ongoing MS care; (2) gender, focused on limited published data in African American men and transgender people; (3) social and community contexts; and (4) financial burdens, related to (a) out-of-pocket costs of MS disease modifying therapies, (b) lost work time, and (c) transportation. Lower frequency SDOH variables were access to public toilets, lost job promotions, environmental exposures, and concern about discrimination. Unmet needs emphasized (1) public understanding of MS; (2) financial support for DMT costs, closer access to infusion centers, and culturally competent care; (3) support for research participation; (4) reliable transportation; and (5) patient awareness of extant services and support programs.

CONCLUSIONS

This in-depth assessment of people with MS who possess multiple SDOH identified the most salient and commonly experienced SDOH, common themes related to the SDOH in MS, unmet needs, and future opportunities.