Abstract

There is a lack of diversity among participants in dermatologic clinical trials. In order to gain an understanding of reasons for poor racial/ethnic diversity in dermatologic clinical trials, we performed a qualitative pilot study of adults with atopic dermatitis (AD) to identify their perceptions of clinical trials. We performed semi-structured interviews of 26 adults with AD. We used a purposive sampling approach to enroll a similar number of white (N=8), black (N=8), and Asian (N=9) adults. Interview responses were independently coded by two research assistants using a grounded theory approach. Median (interquartile range, IQR) age was 28 (24 - 47) years; 76% were female. Median (IQR) duration of AD was 20 (10-27) years; 60% had moderate-to-severe AD. While understanding of clinical trials was similar across racial groups, our data suggest differences in motivations for and barriers to participating in clinical trials by race. Among white patients, motivations to participate in clinical trials were primarily driven by potential direct benefits such as new treatment options in the setting of multiple prior treatment failures and drug safety. Among black and Asian patients, similar direct benefits were voiced as motivating factors, however, an additional motivator included the potential to improve the lives of others. Barriers to participation in clinical trials included side effects and risks of the intervention among all participants. Particularly among black participants, a greater sense of fear of clinical trial procedures such as invasiveness of the intervention and testing procedures (e.g., “radiation” from x-rays) as well as concerns about “pain” and “death” were noted. Our findings suggest different motivators for and barriers to clinical trial participation by race that may be helpful in guiding future clinical trial recruitment efforts among minority groups. Additional studies across a broader range of dermatologic conditions are needed to better understand how to improve minority enrollment in dermatologic clinical trials.

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