Introduction: Black males have the highest incidence and mortality rates from prostate cancer of any racial group in the United States, yet are underrepresented in prostate cancer clinical trials.
Methods: The Prostate Health Education Network surveyed its members about experiences regarding prostate cancer clinical trials and explored reasons for lack of participation. Black males residing in the United States with a diagnosis of prostate cancer were eligible to participate.
Results: Of 480 members contacted, 115 (24.0%) completed the survey. Respondents were diverse in age, geography, education, and socioeconomic status, and 58 (50.4%) had a family history of prostate cancer; 12 of 115 (10.4%) had participated in a prostate cancer clinical trial. The most common reasons for nonparticipation (N = 89) included not being asked (55.1%) and a lack of information about risks and benefits (13.5%). No respondents cited lack of trust in the healthcare system based on personal experience, although 2 (2.2%) cited the Tuskegee study. Factors that would influence future decisions around trial participation included whether respondents (N = 99) perceived the treatment or diagnostic option to be effective for themselves (54.5%), to have the potential to advance medical science (45.5%), and to have minimal side effects (44.4%).
Conclusions: This survey of Prostate Health Education Network members found that the principal reason for Black males not participating in prostate cancer clinical trials was that they were not being asked. This highlights an unmet need for stronger collaboration between patients, health professionals, the pharmaceutical industry, and clinical trial investigators to address barriers to Black males enrolling in prostate cancer clinical trials.
Keywords: Black or African American; clinical trials; health communication; patient participation; prostate cancer.