Informed decision-making about germline testing among Veterans with advanced prostate cancer (APC): A mixed-methods study.
Authors: Kwon Daniel H , McPhaul Marissa , Sumra Saffanat , Ursem Carling Jade , Walker Evan Justin , Scheuner Maren Theresa , Wang Sunny , Aggarwal Rahul Raj , Huang Franklin W. , Belkora Jeffrey 
Published: June 2024

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Background: To tailor care to cancer biology, oncologists offer germline testing to patients with APC. Little is known about whether pre-test counseling conducted by oncologists leads to well-informed, preference-concordant decisions in Veterans with APC. Methods: We conducted a prospective mixed-methods study of consecutive patients with APC who were offered germline testing at an oncology visit at the San Francisco VA. Seven days after the visit, patients were administered the Decisional Conflict Scale (DCS; 16 items scored 0-100, higher = more decisional conflict) and a True/False knowledge test (20 items, scored 0-100% correct). We conducted semi-structured interviews using a theory-informed guide to explore patients’ knowledge, decision-making process, and decisional needs for germline testing. Two coders analyzed the interviews using thematic analysis. Results: Of 68 patients approached, 31 (46%) consented. Mean age was 76y, 21 (68%) were White, and 14 (45%) completed at least college. Mean DCS score was 24 (SD 22); six (19%) patients scored >37.5, which is associated with decision delay. Mean knowledge score was 69% (SD 16); four patients scored < 50%. Patients were least knowledgeable about the results disclosure process (37% correct), presence of privacy laws protecting genetics data (50%), types of test results (50%), and implications of a variant of uncertain significance (50%). Twenty-seven patients (87%) desired germline testing. The most common reasons were to help family and advance research; personal treatment benefits were rarely mentioned. Patients felt the decision was easy, but four experienced uncertainty and decided against testing due to fear of losing service-connected disability benefits. Themes included knowledge deficits about testing benefits/risks, results disclosure process, and impact on disability insurance; presence or absence of autonomy; misconceptions (commercialization or weaponization of genetics data, conflating germline testing and research); disparities due to racial discrimination or homelessness; barriers (poor memory, distress from APC, insufficient details about testing from oncologist, and no access to informational resources); and facilitators (trust in oncologist and the VA, family support, and extra time to make a decision). Patients requested a variable degree of decision support prior to germline testing, ranging from none to a combination of informational materials and coaching. Conclusions: Decisional conflict was low in most but not all patients. Patients’ knowledge deficits, misconceptions, and unawareness of choice due to personal, oncologist, and systemic barriers suggest some did not make informed decisions. To deliver patient-centered oncologist-directed germline testing, future research should focus on developing and implementing decision support personalized to patients’ needs.