What tools do men need to make an informed decision about germline genetic testing for prostate cancer? A qualitative and survey study

Abstract

BACKGROUNDGermline genetic testing for prostate cancer (PrCa) can help identify those at greater risk of developing advanced or lethal disease, while also influencing treatment selection, however it is not widely embedded in PrCa care. An integral part of developing frameworks for the delivery of precision medicine is the inclusion of patients/consumers in the design to ensure their needs are met. METHODSPhase I: Focus group discussions with men diagnosed with PrCa (n=20), to determine their opinions, perceptions and expectations of germline genetic testing for PrCa. Data were analysed thematically. Phase II: Phase I themes informed a Precision Medicine in Prostate Cancer Information Toolkit, which was reviewed by patients (n=14), their carers/family members (n=4) and healthcare providers (n=14). RESULTSPhase I: Knowledge about precision medicine and genetic testing was generally low. The strongest motivation for undertaking testing for patients was to determine family members risk (n=7), and the biggest concern pertained to insurance discrimination (n=5). Phase II: Healthcare providers (n=8) generally found the purpose of the toolkit to be clearer than patients (n=5), who found it difficult to imagine its usefulness when considering their own genetic risk at/before diagnosis. Information regarding life insurance, implications for their family and costs associated with testing were of concern to all participant groups. CONCLUSIONSThis study revealed critical knowledge gaps, preferred communication/support needs, and concerns/risks associated with germline genetic testing for PrCa. Our toolkit, whilst valuable, requires further refinement to ensure broad accessibility across literary and cultural contexts.