Development of a novel measure of advanced cancer patients' perceived utility of secondary germline findings from tumor genomic profiling.

Tumor genomic profiling (TGP) can inform advanced cancer patients' treatment decisions, and also reveal secondary germline findings-information about inherited risks for cancer and other disorders. We sought to develop a measure of patient perceptions of the clinical and personal utility of secondary germline findings. We developed a draft survey based on literature and patient interview data ( Cognitive interviews offered opportunities for survey refinement and confirmation of its comprehensible nature. Exploratory and confirmatory factor analysis of the survey identified 16 items across three subscales with strong internal consistency (Cronbach's alpha ≥0.79): perceived utility for others, perceived utility for self and health, and confidence in secondary findings. We developed a novel valid scale with promise for measuring advanced cancer patients' perceptions of the utility of secondary germline findings. We offer a new patient-derived measure of perceived utility of and confidence in secondary germline findings with potential applications for precision oncology research and clinical communication.

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© 2023 The Authors.

Déclaration de conflit d'intérêts

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: An immediate family member serves as a consultant in Ophthalmology for Adverum, Genentech, Gyroscope Therapeutics Limited, Neurogene, Optos Plc, Outlook Therapeutics, RegenexBio, and Regeneron outside the submitted work (Z.K.S.) - Patent pending on therapeutic applications of targeting ERCC3 mutations in cancer. Diagnosis and treatment of ercc3-mutant cancer US20210137850A1, and other relationship with AnaNeo Therapeutics, Inc (K.O) - Honoraria from Research to Practice, Intellisphere, Physicians’ Education Resource, and MyMedEd; consulting or advisory for Artios Pharma (uncompensated), AstraZeneca (uncompensated), Change Healthcare, Daiichi-Sankyo (uncompensated), Epic Sciences (uncompensated), Merck (uncompensated), Pfizer (uncompensated), Tempus Lab (uncompensated), Zenith Pharma (uncompensated); other support from AstraZeneca (editorial services) and Pfizer (editorial services) (M.E.R.)