Proactive steps needed to make MS rehab trials racially diverse: Study
Scientists call for new look at how race, ethnicity may affect outcomes
Clinical trials testing rehabilitation strategies for people with multiple sclerosis (MS) include a disproportionate number of white participants and have generally paid little attention to how race and ethnicity may influence outcomes. Further, few efforts have been undertaken to make MS trials more racially and ethnically diverse.
A team led by scientists in Canada highlighted these issues in a new study, with a call to the research community to take proactive steps to address these inequities in clinical trials aiming to improve patient rehab in MS.
“We call on the MS rehabilitation research community, and to funders, to pay attention to ensuring that trial and intervention processes accommodate the needs of diverse racial and ethnic groups both in terms of design and their reporting,” the scientists wrote.
“Doing so will ensure that interventions are generalizable and applicable across diverse groups affected by MS, and further help to address some of the inequities in rehabilitation care for these individuals,” they added.
The study, “Mapping two decades of multiple sclerosis rehabilitation trials: A systematic scoping review and call to action to advance the study of race and ethnicity in rehabilitation research,” was published in Multiple Sclerosis and Related Disorders.
Researchers find next to no racially and ethnically diverse studies in review
Rehabilitation interventions are a key component of care for people living with chronic conditions like MS. These interventions can range from physical therapy or exercise to improve motor function, to occupational therapy that aims to devise strategies for navigating day-to-day life, to cognitive training that aims to improve brain function.
People from non-white backgrounds have long been underrepresented in MS research, though it’s become increasingly understood that these patients experience unique challenges that may impact how they respond to care and interact with healthcare systems.
The researchers highlighted, in their study, that these features are rarely addressed in studies of rehabilitation interventions for MS.
To understand the extend to which MS rehabilitation researchers include people from minority ethnic groups in their studies, the team reviewed 871 studies on rehabilitation in MS that were published from 2002 to 2022.
Only 56 (6%) of those studies reported data on participants’ race/ethnicity. This reflects “limited consideration of this important topic within the domain of MS rehabilitation interventions,” the team wrote.
The studies that reported on race/ethnicity covered a total of 4,280 people with MS. About three-quarters of these patients were female, and about half had relapsing-remitting MS. Most of the studies were conducted in North America (71%) or Europe (21%).
The vast majority of patients in these studies — 86% — were white individuals. Another 7% were Black people, while Latin American/Hispanic and Asian patients each accounted for about 1% of the study population. Indigenous or Arab individuals comprised less than 1% of patients overall.
Even though all the studies collected racial/ethnic data, only one of them had any mention that this information was included in analyses to test the effectiveness of a therapy or how well patients stuck with the intervention.
“We found that knowledge about the effect of race and ethnicity on rehabilitation outcomes and intervention adherence in people with MS is virtually non-existent,” the team wrote.
Only two of these studies had explicit considerations related to race and ethnicity in their enrollment criteria, and none of them reported on the race/ethnicity of participants who were screened but ultimately deemed ineligible to participate.
“Despite increasing awareness that MS is prevalent across many racial and ethnic groups, we found little targeted recruitment of non-white participants into the studies included in this review,” the researchers wrote, adding that this finding “may indicate possible limitations of traditional strategies for recruiting racial and ethnic minority groups into MS rehabilitation trials.”
Taken together, these findings suggest that MS rehabilitation researchers may be implicitly excluding non-white individuals who are largely underserved by healthcare systems, have limited access to services, and likely have the most to gain clinically from rehabilitation interventions.
The researchers noted that most of the studies were conducted at rehabilitation centers, and often excluded patients who did not speak English or who had co-occurring problems like depression.
“Taken together, these findings suggest that MS rehabilitation researchers may be implicitly excluding non-white individuals who are largely underserved by healthcare systems, have limited access to services, and likely have the most to gain clinically from rehabilitation interventions,” they wrote.
The team called on the research community to take proactive steps to promote inclusion of more diverse populations, ranging from working with community members on trial design to offering trial information in more languages.
“We urge the MS rehabilitation research community to focus on identifying meaningful ways of working holistically to address individual and external factors that impede participation of racial and ethnic minorities with MS in rehabilitation trials,” they wrote.
The team also highlighted a need for funding of studies outside North America and Europe.
“It is only by ensuring recruitment at sites across countries in which individuals from Black, Latina/Hispanic, Asian, Arab or Indigenous racial and ethnic groups predominate, that better representation of those considered a ‘minority’ in Europe and North America can be achieved,” they wrote.
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