Introduction:

Black Americans with prostate cancer experience the widest racial disparity in cancer incidence and mortality of any cancer in the US. Yet, there is a lack of literature surrounding patient-centered priorities in research regarding prostate cancer, particularly for Black men. In 2022, we published results from the UsTOO Prostate Survey Network highlighting patient reported research priorities in prostate cancer. This population was predominantly White (95% of respondents), which may not represent the research priorities of Black Americans. In this study, we sought to analyze and report research priorities in a cohort of Black prostate cancer patients and their caregivers.

Methods:

We adapted the 2022 UsTOO survey questions to be disseminated through the Black and African-descent Collaborative for Prostate Cancer Action (BACPAC) Virtual Research Community (a network developed through Patient-Centered Outcomes Research Institute funding).  BACPAC advisors reviewed the survey and facilitated dissemination of survey network invitation across the US.  The survey was distributed to 2,057 Virtual Research Community members during the month of May 2024. It was limited to Black prostate cancer patients only; however, non-Black caregivers of Black patients could complete surveys as well. We report survey responses focused on priorities in three research domains: localized, recurrent, and advanced prostate cancer. Survey respondents were asked to rate the importance of a series of comparative effectiveness research questions using a 5-point likert scale.  Respondents were also asked to choose the topic they felt was most important.  The project was reviewed by the University of Washington IRB.  Descriptive analysis was performed. 

Results:

Our cohort consisted of 1,211 participants, 749 patients and 484 caregivers. Twenty-two participants were both a patient and a caregiver.  Patient and caregiver research priorities were in congruence for top rated research priorities. Table 1 shows the frequency with which topics were ranked as most important within each domain. The role of genetics in understanding prostate cancer prognosis was most valued for localized cancer, while utility of decision-making tools and quality of life metrics were most valued for recurrent and advanced disease, respectively.

Conclusion:

We present a unique list of research priorities identified by Black prostate cancer patients and their caregivers using a patient-centered and community-engaged research approach.  Our research team is using these priorities to develop patient-centered, comparative effectiveness research trials that aim to address disparities among Black prostate cancer patients.  

Funding: N/A