Medical Mistrust among Black IBD Patients: How Big is the Problem?

Abstract

Study Overview Black patients are underrepresented in most clinical gastroenterological studies, particularlythose related to inflammatory bowel disease (IBD). In most recent therapeutic trials, Black patients accounted for less than 5% of participants. One potential barrier among Black patients may be a lack of trust, due, at least in part, to historical abuses such as the Tuskegee syphilis study. The underrepresentation of Black patients in clinical trials impedes the generalizability of study findings. Moreover, because Black patients often suffer severe peri-anal, fistulizing disease, their absence from clinical trials poses problems for medical research about IBD. Limited research has been performed to determine the presence of barriers among Black IBD patients in clinical trials. We conducted a survey, in which Black IBD patients comprise 83% of the sample, to assess trust in physicians, clinical trials, and other related factors. Methods We developed a survey to evaluate aspects of patients’ trust, experience with healthcare, clinical trials, and perception of disease. Links to the survey were distributed via email and text to all participants of the Color of Crohn’s and Chronic Illness Patient Symposium, a conference held in Washington, D.C., in September 2021. Emails and texts were sent to attendees before, during, and after the event, and our study was highlighted in event announcements. Results Of the 75 patient attendees registered for the conference, a total of 48 IBD patients responded to the survey. The sample’s mean age of participants was 42, with ages ranging from 20 to 76. Participants were well educated (60% with a college degree or more) and their median yearly household income was $65,000. 83% of the sample identified as Black, and 79% identified as women. Nearly half of the sample (43%) reported experiencing racism when receiving medical services. 80% of the Black IBD patients knew about the Tuskegee study, but only 20% of them indicated that the Tuskegee study would impact their decision to participate in a clinical trial. Participants expressed a general level of trust in primary care doctors (77%) but a little less trust with (66%) their GI doctors. Conclusion Overall, most of the Black IBD patients in the sample expressed trust in their medical community. However, more specifically, less-educated Black IBD patients had higher levels of trust but were also less likely to be invited to participate in clinical trials.