Racial differences in clinical trial perceptions among a large, predominantly Black cohort of people with systemic lupus erythematosus in the Southeastern USA.

OBJECTIVE

Black people in the USA have a higher incidence and severity of SLE and worse outcomes, yet they are significantly under-represented in SLE clinical trials. We assessed racial differences in clinical trial perceptions among a large cohort of predominantly Black people with SLE.

METHODS

Georgians Organised Against Lupus (GOAL) is a population-based, prospective cohort of people with a validated diagnosis of SLE living in Atlanta. The 2021-2022 GOAL survey included questions assessing knowledge, perceptions and experiences of lupus clinical trials involving drug therapy. Self-reported race was categorised as Black or non-Black. Survey responses by race were compared using χ analyses. Among Black respondents, factors associated with willingness to participate in clinical trials were examined using univariable logistic regression.

RESULTS

A total of 767 individuals responded to the 2021-2022 GOAL survey, of whom 80% were Black. There were 720 female respondents and 47 male respondents. There was no significant difference in willingness to participate in clinical trials between Black and non-Black respondents (28% vs 31%, p=0.071). Black respondents were less likely to correctly identify the definition of a clinical trial (34% vs 70%, p<0.001). Male gender, unemployed or disabled status, governmental health insurance and higher disease activity were associated with willingness to participate in clinical trials among Black respondents.

CONCLUSIONS

We found that only 28% of respondents were willing to participate in lupus clinical trials, with no difference by race. Efforts must continue to engage those resistant to trial participation, regardless of race. Our findings also indicate that further research is warranted to assess whether strategies such as clinical trial education and diversification of study staff may be helpful to increase Black patient recruitment. Sociodemographic factors (gender, work status, insurance status) and disease-related factors (lupus activity) may also play important roles in clinical trial participation among Black people.