Patient Diversity in MS Rehabilitation Trials Lacking Over the Past 20 Years

MS rehabilitation trials have lacked racial and ethnicity diversity of patients over the past 20 years.

Over the past 20 years, rehabilitation trials designed to reduce functional impairments, increase activity levels, and improve social engagement of patients with multiple sclerosis (MS) have fallen short when considering race and ethnicity in trial development and execution, according to study results presented at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2023, held in San Diego, California, from February 23 to 25.

Researchers in Canada and the United Kingdom conducted a scoping review of the literature to assess how well MS rehabilitation trial researchers considered race and ethnicity when developing eligibility criteria, planning recruitment strategies, and choosing outcomes to measure intervention efficacy, and promoting adherence and retention to the trial.

They searched for relevant randomized controlled trials lasting 3 or more weeks that were published in Embase, MEDLINE, CINAHL, Cochrane Central, and the Web of Science between 2002 and March 2022. They identified 5418 studies and reviewed 578 full text studies written in English.

The researchers discovered that the vast majority (90%; 518/578) of the studies failed to mention race and/or ethnicity, whereas 56 specified the race and/or ethnicity of study participants. None of the 578 studies mentioned how race or ethnicity were taken into consideration during planning and execution of the rehabilitation trials.

MS rehabilitation researchers risk developing and implementing “evidence-based” interventions that lack generalizability and applicability across a diverse range of racial and ethnic groups affected by MS.

Forty-four (73%) of these 56 studies that reported race/ethnicity were conducted in North America, while the remaining 12 (20%) took place in Europe. There were a total of 4280 study participants across the 56 trials.

The diversity of the rehabilitation studies that did report race/ethnicity predominantly assessed treatment efficacy among Caucasian patients with MS (n=3669; 86%). Patients with MS of Black (n=282), Latino/Hispanic (n=60), Asian (n=46), Indigenous (n=7), and Arab (n=2) ethnicities and races comprised less than 10% of study participants.

“Without consistent and systematic attention to race and ethnicity in the design and delivery of interventions, MS rehabilitation researchers risk developing and implementing ‘evidence-based’ interventions that lack generalizability and applicability across a diverse range of racial and ethnic groups affected by MS,” the researchers noted.

They acknowledge that their research is a call to action to ensure future MS rehabilitation trials are designed and conducted to address the needs of diverse racial and ethnic MS communities.

References:

Fakolade A, Akbar N, Mehelay S, et al. Examining race and ethnicity in multiple sclerosis rehabilitation trials: A call to action. Presented at: ACTRIMS Forum 2023; February 23-25; San Diego, CA. Poster 476.