Regardless of race or ethnicity, people with multiple sclerosis (MS) agree that clinical studies are important and show a willingness and interest in being participants, a primarily U.S. survey found.
Those belonging to minority groups, however, are often deterred from taking part in MS studies for reasons that range from legal and healthcare coverage concerns to mistrust in trial investigators.
Based on these findings, researchers wishing to conduct studies in wide variety of patients are advised to take the time to assure patients that their rights and well-being will always be a priority, and explain the specific measures in place to guarantee those priorities.
“Researchers can also make their study more attractive to minority groups by highlighting how their study will benefit specific communities. For example, studies of MS treatments could state as an explicit goal the comparison of outcomes in different racial or ethnic groups,” the investigators wrote.
These findings were reported in the study, “Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups,” published in the International Journal of MS Care.
While MS was once thought to affect mostly whites in the U.S., recent studies found that African-Americans have a higher risk of developing the disorder, and that Hispanic Americans have a more severe disease course.
“Socioeconomic factors, lack of access to specialists, lack of education about MS treatments, and delays in diagnosis with more severe prognoses may contribute to disparities in health outcomes in the African American and Hispanic communities,” the researchers wrote.
Individuals from minority groups tend to be underrepresented in MS trials. This tendency, evident in both public- and industry-funded studies, can have negative consequences, including an unequal distribution of benefits from study participation across populations, further increasing healthcare disparities among minority groups.
Members of the MS Minority Research Engagement Partnership Network (MREPN) — a group of clinicians, researchers, and patient advocates working to identify and address barriers hindering minority participation in MS trials — suggested this trial inequity may be due in part to differences in perceptions and preferences.
To investigate this, MREPN members created a 35-question online survey to gather the perceptions, concerns, and preferences of MS patients from different racial and ethnic backgrounds regarding participation in MS trials.
Invitations to the survey, available in English and Spanish, were distributed by MREPN members and partner organizations via email, social media, and in-clinic flyers.
A total of 2,631 MS patients, 21 years or older, responded to the survey. After excluding patients who submitted ineligible responses, investigators selected a total of 2,599 to be included in the analyses.
Most survey respondents were white (81%). Blacks and Hispanics combined accounted for less than 20% of all participants. Most respondents (92.89%) were U.S. residents, while the remainder resided in 40 other countries.
In general, patients recognized the importance of MS trials and showed both an interest and willingness to participate.
“This study revealed that people with MS belonging to different races and ethnicities agree about the importance of MS research and are interested in participating in research studies. They are interested in learning about research opportunities and would most trust information that is provided by their healthcare providers and MS organizations,” the researchers wrote.
There was also a general consensus that confusing study information and potential health dangers were the two main concerns regarding MS trials.
However, survey findings also showed that African-American and Hispanic patients had additional concerns that weighed on their participation.
For instance, compared with white patients, Blacks were twice as likely to be concerned about being used by trial investigators. Those of Hispanic origin were also more concerned about being taken advantage of than were non-Hispanic patients.
Likewise, Hispanics were more likely than non-Hispanics to agree that there’s “not much left to learn about MS.” Black patients showed a lesser willingness to agree that better treatments came from research than did other patient groups. Both these distinctions remained significant after adjusting for factors like socioeconomic status, the researchers reported.
African-Americans also tended to assign a greater importance to research into diet and exercise than did white patients, and into studying ways to diagnose MS more quickly. From a “history of racism and discrimination against this community” particular to the U.S., Blacks also tended to show a great distrust of research and medical teams.
Hispanic patients and those of unknown or undisclosed ethnicity were also more concerned that participating in MS trials could negatively affect their legal and employment status, and their health insurance. Black patients voiced concern about the release of personal information without approval.
Being given medical treatment of poorer quality was a common concern among both African-American and Hispanic patients.
To promote greater minority participation, survey investigators argued that trial researchers should take the time to specifically address these concerns, “for example, by clearly explaining the protections that are in place to protect the rights and well-being of study participants.”
Still, “similar to research in other areas of medicine, we found that altruism (research participation benefiting others in the community), low risk in participation, and individual benefits to participation (such as receiving individual test results) are incentives or facilitators to participate in MS research across racial and ethnic groups,” the investigators added.
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