Understanding of multigene test results among males undergoing germline testing for inherited prostate cancer: Implications for genetic counseling. Issue 12 (14th April 2018)

• Record Type: Journal Article
• Authors: Giri, Veda N.; Obeid, Elias; Hegarty, Sarah E.; Gross, Laura; Bealin, Lisa; Hyatt, Colette; Fang, Carolyn Y.; Leader, Amy
• Is Part Of: Prostate. Volume 78:Issue 12(2018)
• Page Start: 879
• Page End: 888
• Publication Date: 2018-04-14
• Subjects: genetic counseling -- genetic testing -- multigene testing -- prostate cancer -- understanding of test results; Prostate -- Diseases -- Periodicals; 616
• DOI: 10.1002/pros.23535
• Languages: English
• ISSNs: 0270-4137

Abstract

Abstract : Background: Genetic testing (GT) for prostate cancer (PCA) is rising, with limited insights regarding genetic counseling (GC) needs of males. Genetic Evaluation of Men (GEM) is a prospective multigene testing study for inherited PCA. Men undergoing GC were surveyed on knowledge of cancer risk and genetics (CRG) and understanding of personal GT results to identify GC needs. Methods: GEM participants with or high‐risk for PCA were recruited. Pre‐test GC was in‐person, with video and handout, or via telehealth. Post‐test disclosure was in‐person, by phone, or via telehealth. Clinical and family history data were obtained from participant surveys and medical records. Participants completed measures of knowledge of CRG, literacy, and numeracy pre‐test and post‐test. Understanding of personal genetic results was assessed post‐test. Factors associated with knowledge of CRG and understanding of personal genetic results were examined using multivariable linear regression or McNemar's test. Results: Among 109 men who completed pre‐ and post‐GT surveys, multivariable analysis revealed family history meeting hereditary cancer syndrome (HCS) criteria was significantly predictive of higher baseline knowledge ( P = 0.040). Of 101 men who responded definitively regarding understanding of results, 13 incorrectly reported their result (McNemar's P < 0.001). Factors significantly associated with discordance between reported and actual results included having a variant of uncertain significance (VUS) ( P < 0.001) and undergoing GC via pre‐test video and post‐test phone disclosure ( P = 0.015). Conclusions: While meeting criteria for HCS was associated with higher knowledge of CRG, understanding of personal GT results was lacking among a subset of males with VUS. A more exploratory finding was lack of understanding of results among men who underwent GC utilizing video and phone. Studies optimizing GC strategies for males undergoing multigene testing for inherited PCA are warranted.