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A 20-Year Review of Race and Ethnicity in Multiple Sclerosis Rehabilitation Trials: Work in Progress
There is increasing awareness that multiple sclerosis (MS), long considered to primarily affect White individuals of European descent, does in fact occur in many racial and ethnic groups. MS disproportionately impacts racially minoritized populations. We do not know whether MS rehabilitation researchers pay attention to examining issues of race and ethnicity in their trials despite the potential impact of non-modifiable (genetic) and modifiable environment factors in rehabilitation outcomes. Without consistent and systematic attention to these issues, MS rehabilitation researchers risk developing and disseminating “evidence-based” interventions that lack generalizability and applicability across a diverse range of racial and ethnic groups.
Objectives:
This review explores the extent to which trials of MS rehabilitation consider race and ethnicity in defining eligibility criteria, planning recruitment and retention strategies, designing intervention delivery and adherence promoting approaches, and selecting outcome measures.
Methods:
Five databases (MEDINE, CINAHL, Cochrane, EMBASE, and Web of Science) were searched from 2002 to March 2022 to locate relevant articles of MS rehabilitation trials. Studies were screened and limited to: peer reviewed randomized trials of rehabilitation interventions targeting adults with MS; ≥3 weeks in duration; full text; and English. Our protocol was registered prospectively with the Open Science Framework (https://osf.io/m9qug).
Results:
Across all searches, we identified 5428 articles. After removal of 2319 duplicates, 3109 titles and abstracts were screened for eligibility. Full text screening of 888 articles is ongoing. Data analysis is ongoing and due for completion by May 2022. Data analysis will involve a descriptive summary and thematic synthesis of the extracted information. We will present preliminary findings on how race and ethnicity are considered in defining eligibility criteria, planning recruitment and retention strategies, designing intervention delivery and adherence promoting strategies, and selecting outcome measures.
Conclusions: Rehabilitation is advocated as an integral component of comprehensive MS care throughout the disease course. We anticipate that the findings from this study may have important implications for developing novel rehabilitation interventions or tailoring existing ones for the “whole person”, and for diverse MS communities.