Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.

OBJECTIVE

Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention.

METHODS

We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically.

RESULTS

We held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials.

CONCLUSION

Actions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.