Patient-reported outcomes among males undergoing prostate cancer germline testing: Interim results from the Prostate Cancer Genetic Risk, Experience, and Support Study (PROGRESS) Registry.

Abstract

10595 Background: Indications for prostate cancer (PCA) germline testing (GT) have greatly expanded, necessitating thousands of men to seek genetic evaluation through traditional genetic counseling and alternate delivery approaches. Therefore, there is an important need for patient-reported outcomes among men undergoing genetic testing which has been understudied. PROGRESS (Prostate Cancer Genetic Risk, Experience, and Support Study) was therefore developed to garner men’s experience with PCA germline testing. Here we provide an interim update on recruitment and results from registry participants. Methods: PROGRESS is a patient-driven registry of clinical, genetic, and patient-experience information among men undergoing PCA genetic testing. Survey covers demographic information, PCA history, mode of genetic counseling, satisfaction, decisional conflict, intention to share genetic results with family and physicians, attitude towards genetic testing, knowledge of cancer genetics, medical literacy, and numeracy. Descriptive statistics summarized results with counts and percentages for categorical variables and mean and standard deviation for continuous variables. All analyses were performed with SAS 9.4 (Cary, NC). Results: Current enrollment is 217 participants. Among 140 men with complete demographics, 93.57% are White, 98.6% non-Hispanic/Latino, 85% with bachelor’s degree or higher. Among 143 respondents, 60% reported a diagnosis of PCA. Among 85 men who reported on Gleason score, 24.7% had Gleason > = 8. Regarding family history, 23.5% reported a 1st/2nd degree relative with PCA and 58.1% reported a 1st/2nd degree relative with any cancer. Among 150 men who reported genetic results, 40.7% had a genetic mutation, 18% reported having a VUS, and 10.7% reported not knowing their results. Among 185 men who reported on mode of genetic evaluation, 58.4% met with a genetics professional and 21.7% reported their doctor had discussed genetic testing. Satisfaction was high (n = 121) (highest score 30; mean score 27.92 + 2.73) and decisional conflict was low (n = 138) (mean score 26.07 + 10.18; range 16-80). Majority of 140 respondents discussed their results with their family (93.6%). Knowledge of cancer genetics was modest, with correct responses among 140 respondents of 50.1% + 28.1. Conclusions: Current participants of the PROGRESS Registry report high satisfaction with their genetic evaluation process. However, resources are needed to increase knowledge and understanding of genetic results. Greater engagement of African American males is critically needed to garner diverse perspectives and develop resources for men and their families applicable across populations. Target goal of the registry is 500 males; men can be referred to participate in the PROGRESS Registry at www.progressregistry.com .