Yale School of Medicine and Yale Cancer Center, New Haven, CT
Veda N. Giri , Laura Gross , Rebecca Hartman , Amy Leader , Young E. Whang , Anna Couvillon , Heather H. Cheng , Channing Judith Paller , Stacy Loeb , Lawrence Ivan Karsh , Sue J. Friedman , Tomasz M. Beer , Alexandra Sokolova , Scott W. Keith
Background: Indications for prostate cancer (PCA) germline testing (GT) have greatly expanded, with genetics delivery being implemented in a variety of ways. Here we evaluate factors related to men’s experience with genetic evaluation (GE) in the PCA Genetic Risk, Experience, and Support Study – PROGRESS Registry. Methods: Men took online surveys that covered demographics, PCA history, mode of GE, and measures of patient-reported outcomes (PROs) (satisfaction [Demarco 2004] [Score 6-30; higher=greater satisfaction], decisional conflict [O’Connor 1995] [Score 16-80; higher=greater conflict], attitude re: GT [Marteau 2001] [Score 1-7; higher=perceived benefit], and knowledge of cancer genetics [Erblich 2005] [% correct of 15 questions]). Data were summarized using descriptive statistics. Multiple linear regression modeling assessed relationships between characteristics, mode of GE, and PROs. Significance level was a nominal α = 0.05 (SAS v9.4). Results: PROGRESS reached accrual goal (n=500). Characteristics (among n=414): 87.7% White, 6.0% Asian, 87.7% bachelor’s degree or higher. Among n=422, 46.9% reported PCA diagnosis. Among n=416 who reported genetic results, 27.9% had pathogenic/likely pathogenic variants (P/LPV), 14.7% had VUS, and 9.9% did not know. Mode of GE was delivered: by genetics professional (GP) (24.9% in-person,10.5% phone, 6% telehealth), by doctor (21.1%), from website (20.8%), by genetics lab (5%), and by video (10.8%). Some reported not having pretest discussion (23.7%) or not knowing (8.1%). From multiple regression models, several factors including race, mode of GE, education, and genetic results were related to PROs. Conclusions: Several factors may impact men’s experience with PCA GE, deserving further study into root causes particularly related to diverse populations and genetics care delivery models to support men and their families.
Multiple regression models. | |||
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Category (n=complete data) | Relationship | Result | (95% CI) (p-value) |
Satisfaction (n=342) | Lower: Asians vs. Whites | -2.91 | (-4.35, -1.48) (p<0.0001) |
Higher: GP (phone) vs. others | 1.31 | (0.26, 2.36) (p=0.02) | |
Higher: doctor vs. others | 1.26 | (0.38, 2.13) (p=0.01) | |
Decisional conflict (DC) (n=397) | Higher: Asians vs. Whites | 8.94 | (4.36, 13.53)(p=0.0001) |
Higher: not knowing GT vs. neg | 4.77 | (1.00, 8.54) (p=0.01) | |
Lower: GP (phone) vs. others | -3.75 | (-7.28, -0.23) (p=0.04) | |
Knowledge (n=402) | Higher: graduate vs. < bachelor’s degree | 15.62% | (7.97, 23.27) (p<0.0001) |
Higher: PCA FH vs. no FH | 12.89% | (4.97, 20.82) (p=0.0015) | |
Lower: not knowing GT vs. neg | -22.86% | (-30.95, -14.76) (p<.0001) | |
Higher: P/LPV vs. neg | 12.80% | (7.02, 18.57) (p<0.0001) | |
Higher: genetics lab (phone) vs. others | 14.11% | (3.30, 24.93) (p=0.01) | |
Higher: doctor vs. others | 9.44% | (-15.90, -2.98) (p=0.004) | |
Attitude (benefit of GT) (n=399) | Lower: graduate vs. <bachelor’s degree | 0.41 | (-0.80, -0.03) (p=0.03) |
Higher: P/LPV vs. neg | 0.31 | (0.02, 0.59) (p=0.03) |
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Abstract Disclosures
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