Identification of Factors Affecting the Accrual of Black Males Into Prostate Cancer Clinical Trials in the United States

Abstract

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.

Figure.

The Prostate Health Education Network (PHEN)–Prostate Cancer Clinical Trials Consortium (PCCTC) initiative to increase enrollment of Black patients with prostate cancer into clinical trials.

Figure 1.

US states where survey respondents were residing. ^aNumbers in brackets represent the incidence rates for prostate cancer in Black males, based on the data provided by Giaquinto et al.

Figure 2.

Reasons why survey respondents had not participated in a prostate cancer clinical trial (N = 89 responses). Of the 115 participants, 93 stated they had not participated in a prostate cancer clinical trial and 26 did not provide a response when asked why they did not participate. Reasons for not participating cited under “Other” included being currently cancer-free, novel treatments not being required for the form of prostate cancer they had, an appropriate trial not being available for the form of prostate cancer they had, not being eligible for participation in a clinical trial, a perceived lack of benefit from participating in a clinical trial, the perception that clinical trials were for patients who were not already in treatment, lack of time or interest, or other commitments (such as caring for elderly relatives). These data are available to view in tabular form in Supplementary Table 2 (https://www.urologypracticejournal.com).

Figure 3.

(A) Characteristics of a prostate cancer clinical trial that Black males considered would most influence their future decision to participate (N = 99). B, Qualities that participants would consider important in a prostate cancer clinical trial research team (N = 97). ^aFor both questions, participants were asked to choose their top 3 answers. Qualities of a prostate cancer clinical trial research team cited under “Other” (B) included “physicians who look like me” and “the top group in their specialty.” These data are available to view in tabular form in Supplementary Tables 3 and 4 (https://www.urologypracticejournal.com).

Figure 4.

Concept (A) and overview (B) of the joint Prostate Health Education Network (PHEN)–Prostate Cancer Clinical Trials Consortium (PCCTC) initiative. Figure 4, A is copyright 2021 Prostate Health Education Network and used with permission.