Perceptions of clinical trial participation in African American cancer patients

Background: African Americans (AA) participate in oncologic clinical trials (CT) at lower rates than Caucasians, despite a disproportionally high rate of cancer. While general barriers to participation in CT among AA have been explored, little is known in regard to specific differences of perspectives in those who do or do not participate. Based on an initial and separate qualitative analysis of 16 patients, a perceptual mapping survey was developed to explore barriers and facilitators to participation in CT amongst AA. 

Methods: We surveyed AA adult cancer patients at two cancer centers about demographics and knowledge, beliefs, attitudes and perceptions in regard to CT. We asked them to report how much they agreed or disagreed on a 0-10 scale (0 = strongly disagree, 10 = strongly agree) with statements regarding clinical trials’ helpfulness, benefits, barriers, and value, support from those around them, and beliefs about healthcare providers. We used descriptive statistics and t-tests to assess for differences between those willing to and unwilling to participate in CT. 

Results: Of 41 patients recruited, 54% have not participated in a CT within the last 9 months. Mean age was 60 years (27-78), 51% were female, 39% completed high school and 71% had private insurance. CT participants more strongly agreed that their doctor had given them enough information to make a decision about being part of a CT (p < 0.001). Agreement that the benefits of being in a CT outweigh the possible side effects (p = .016) and that being in a CT offers the best treatment available for cancer (p = .015) were also stronger among CT participants. Non-CT participants more strongly believed that being in a clinical trial would make them sicker (p = .019), that important information would be withheld from them if they were in a clinical trial (p = .008) and that no one talked to them about being part of a CT (p < 0.001). 

Conclusions: Significant perceptual differences between AA cancer patients who have and have not participated in a CT were noted. Greater attention needs to be given to addressing negative perceptions of CT, as well as ensuring that all AA cancer patients receive clear and sufficient information regarding CT participation in order to make an informed decision about their care.