Experiences of metastatic prostate cancer patients with a mainstream genetic testing pathway

Patients with metastatic prostate cancer (mPCa) are eligible for germline genetic testing. This study assessed the experiences of mPCa patients undergoing genetic testing after being counselled by non-genetic healthcare professionals (ngHCPs: urologists, oncologists, nurses). We assessed the psychosocial impact, decision-making difficulties and knowledge of genetics. In a prospective cohort study across 15 hospitals in the Netherlands, genetic testing was discussed and requested by ngHCPs. Patients completed questionnaires shortly after receiving pre-test genetic counselling and 4 weeks and 6 months after receiving their genetic test results. Anxiety, depression, distress, decisional conflict regarding genetic testing, decision regret and knowledge of genetics were assessed. Of 767 patients who received germline genetic testing, 5% to 8% experienced clinically significant anxiety or depression at some point in time. Although up to 49% of participants had significantly elevated distress scores as assessed with the Distress Thermometer, more than 90% stated that the testing process did not affect their feelings of distress. Patients with high educational levels had more favourable outcomes than patients with low educational levels on distress and decisional conflict (odds ratios 0.36 [0.23-0.57] and 0.44 [0.21-0.93], respectively). Furthermore, only 50% of the knowledge questions about genetics were answered correctly. To conclude, germline genetic testing within a mainstreaming pathway does not lead to increased levels of general anxiety or depression in most mPCa patients. However, the poorer outcomes on several psychosocial measures for patients with low educational levels are a point of concern.