Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences.

Abstract

Background: Multiple sclerosis is a neurodegenerative and neuroinflammatory disease causing a variety of symptoms, involving physical and cognitive domains. Previous research has demonstrated that racial disparities are prevalent in multiple sclerosis neurological outcomes, with Black individuals facing worse disease outcomes than their White counterparts.

Objective: To examine the race- and place-based differences in experiences with multiple sclerosis care among Black and White participants.

Methods: Qualitative data were collected from 20 adults with multiple sclerosis during four focus groups and ten individual semi-structured interviews. Focus groups and interviews were audio-recorded, transcribed, and coded in NVivo. Thematic analysis was used to identify dominant themes.

Results: Thematic analysis resulted in the following themes: health care quality, health literacy, patient-provider communication, multiple sclerosis, place, and race. Similarities and differences between Black and White participants were identified that may be fruitful areas for intervention to reduce existing disparities.

Conclusions: Both Black and White participants described positive experiences they have had with their multiple sclerosis care. However, only Black participants discussed the role of health insurance and facing discrimination. Only White participants reported residing in an area with access to many providers.