Healthcare Experiences and Medical Mistrust Among People with Multiple Sclerosis: The Role of Racism and Social Deprivation

Background: African Americans/Black adults with multiple sclerosis (MS) experience advanced disease progression and worse health outcomes compared to White adults. Across other patient populations, neighborhood disadvantage is linked to worse health outcomes, increased healthcare use, and earlier death. These factors, which can be measured using the Area Deprivation Index (ADI; Kind et al., 2018), have yet to be examined as they relate to inequities in MS. The ADI allows for ranking of neighborhoods by socioeconomic disadvantage informed by income, education, employment, and housing quality.

Objectives: To examine the role of and racism among Black and White adults with MS as they relate to healthcare experiences and medical mistrust.

Methods: Black and White participants completed an online REDCap instrument. Participants’ residential addresses, pulled from REDCap, were geocoded to obtain the ADI, ranging from 0 (least deprived) to 100 (most deprived), and divided into quintiles.

Results:

Participants (N=155) were 61 Black (79% female; age M±SD=48.2±12.3 years; PDDS median, IQR=2.0, 3.0) and 86 White (48% female; age M±SD=51.1±13.0 years; PDDS median, IQR=3.0, 4.0) adults with MS. The ADI for Black participants was higher (M±SD=28.4±16.6) than for White participants (M±SD=24.3±17.9), with a small effect size (d=.24, 95% CI: -0.11–0.58). Compared to White participants in the least deprived quintile (M±SD=5.09±2.79) and Black participants in the most deprived quintile (M±SD=5.54±2.07), Black participants in the least deprived quintile reported more discrimination (M±SD=7.29±2.81) by their healthcare providers, with intermediate to large effects (d=0.79, 95% CI: -0.08–1.66). Although associations between ADI and medical mistrust were negligible within racial groups (d= 0.06 to 0.10), Black participants consistently reported greater levels of medical mistrust compared to White participants within the least and most deprived quintiles (d = 0.35 and 0.37, respectively).

Conclusions:

Compared to White participants with MS, Black participants with MS in the least and most deprived ADI quintile reported more experiences of discrimination by their healthcare providers. Black participants who were least deprived reported more discrimination compared to Black participants who were most deprived, suggesting that increased social resources does not always translate to improved healthcare experiences. Consistent with other patient populations, Black participants at the 1st and 5^th deprivation quintile reported more medical mistrust than Whites. Our findings reveal that despite a lack of social barriers to receiving healthcare, historical factors leading to medical mistrust may continue to act as barriers among historically underserved groups and deserve further attention in MS. In future studies, we will explore the quality of MS healthcare in this context to further define contributing factors to inequities in MS.