By Gina Shaw – December 16, 2021
Article In Brief
A review found a paucity of studies that look in depth at the social determinants of health that impact disparities and inequities of care for multiple sclerosis for Black, Brown, Latino and Hispanic people. Experts in health care disparities and MS offered practical tips to help neurologists address these inequities in care.
Social determinants of health have a major impact on access to and outcomes of care for Black and Hispanic and Latino people with multiple sclerosis (MS) or neuromyelitis optica spectrum disorder (NMOSD), according to a comprehensive new review of the literature published in JAMA Neurology in October.
The authors found that these populations experience increased morbidity and mortality, have unequal access to health care, and are greatly affected by social determinants of health such as lower income and lower education. That may come as no surprise to most neurologists who treat people with MS and NMOSD, particularly if they serve a diverse population. But perhaps the most revealing and troubling finding from this review is just how little research has been dedicated to understanding the role of social determinants of health and inequities in access to care in MS and NMOSD outcomes among these groups.
Investigators from the Keck School of Medicine at the University of Southern California and Kaiser Permanente Southern California reviewed the English-language literature from January 1, 2014 to March 1, 2021, and found a total of 10 studies that focused on health disparity and inequity in racial and ethnic US populations with MS and NMOSD during that time period. They found an additional 11 studies examining specific social determinants of health (SDOH) in different racial and ethnic populations in the United States with MS.
“To date, health disparity research in MS and NMOSD has been descriptive or concentrated on individual-level SDOH,” the authors wrote. “While we did find several studies evaluating health literacy in MS in Hispanic and Latinx patients, we did not find any studies addressing health system level interventions.”
They noted that these populations continue to be consistently underrepresented in research and clinical trials, leading to limited data on the mechanisms or factors that are contributing to the higher level of disabilities reported in Black and Hispanic and Latin patients compared with White patients in most referral centers.
“This is a review that definitely needed to be done,” said MS expert Mitzi Joi Williams, MD, the founder and CEO of Joi Life Wellness Group Multiple Sclerosis Center in Atlanta, and one of the leaders of the first National African American Multiple Sclerosis Registry, which aims to estimate the number and geographic distribution of African American people diagnosed with MS in the United States, the existence of barriers to access to care, and strategies that are needed to undo inequities of access.
“It really highlights the need for a better understanding of why we see the outcomes we see in these populations. We know social determinants of health play a large role, but the missing piece is that we don’t have enough data about all of the factors affecting these outcomes.”
“We found that studies have not made any effort to obtain information on social determinants of health and how they affect access to care, time to diagnosis and outcomes,” said one of the study authors, Annette M. Langer-Gould, MD, PhD, the regional lead for cinical and translational neuroscience for the Southern California Permanente Medical Group and an MS specialist at Los Angeles Medical Center.
“At best, they might measure current income. My first reaction was, ‘Wow, we really know so little,’” Dr. Langer-Gould said. “It often wasn’t considered important enough for researchers to ask the question, or when they did, it wasn’t asked very carefully, or there was a quick jump to language that implies some sort of biological difference without considering the realities of the lived experience of being non-White in the United States.”
When these factors are studied, the authors found, health disparity research in MS and NMOSD has been descriptive or concentrated on individual-level social determinants of health. “While we did find several studies evaluating health literacy in MS in Hispanic and Latinx patients, we did not find any studies addressing health system level intervention,” they wrote.
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