Samantha Greenberg1, Stacey Slager2,3, Brock O' Neil1,2, Kathleen Cooney4, Benjamin Maughan1,5, Nicole Stopa6, Vickie Venne7, Susan Zickmund8, Sarah Colonna1,9. 1. Huntsman Cancer Institute, University of Utah School of Medicine, Salt Lake City, Utah. 2. Department of Urology, University of Utah School of Pharmacy, Salt Lake City, Utah. 3. Pharmacotherapy Outcomes Research Center, University of Utah School of Pharmacy, Salt Lake City, Utah. 4. Department of Medicine, Duke University, Durham, North Carolina. 5. Division of Medical Oncology, Department of Internal Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah. 6. Kaiser Permanente, Denver, Colorado. 7. Genomic Medicine Service VA Salt Lake City Healthcare System, Salt Lake City, UT. 8. VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT. 9. George E. Wahlen Department of Veterans, Affairs Medical Center, Salt Lake City, Utah.
Abstract
BACKGROUND: Guidelines have changed recently to include genetic counseling (GC) and/or genetic testing (GT) for all men with aggressive prostate cancer (PCa). This study aimed to identify what information men with PCa desire before and from GC. METHODS: Focus groups were conducted with men who have PCa. Audio recordings were analyzed for themes related to GT, the information they desired from health care providers, and implications for family members. RESULTS: Thirty-seven men with PCa participated in seven focus groups. Nearly all men felt GT was beneficial and impactful for their family and themselves. Most men were unaware of the risks to female relatives associated with hereditary cancer. Participants discussed that genetics should be incorporated at an appropriate time of their diagnostic journey. CONCLUSION: This study showed that men valued GC and GT for personal and familial implications, and often did not associate PCa genetics with risk for female relatives to develop cancer. Consideration should be given to the GC timing in regard to where men are in their treatment process. Providers referring patients can leverage patient motivations and utilize their relationship with the patient to determine the appropriate timing and personalize discussion with the patient regarding GC and GT.
BACKGROUND: Guidelines have changed recently to include genetic counseling (GC) and/or genetic testing (GT) for all men with aggressive prostate cancer (PCa). This study aimed to identify what information men with PCa desire before and from GC. METHODS: Focus groups were conducted with men who have PCa. Audio recordings were analyzed for themes related to GT, the information they desired from health care providers, and implications for family members. RESULTS: Thirty-seven men with PCa participated in seven focus groups. Nearly all men felt GT was beneficial and impactful for their family and themselves. Most men were unaware of the risks to female relatives associated with hereditary cancer. Participants discussed that genetics should be incorporated at an appropriate time of their diagnostic journey. CONCLUSION: This study showed that men valued GC and GT for personal and familial implications, and often did not associate PCa genetics with risk for female relatives to develop cancer. Consideration should be given to the GC timing in regard to where men are in their treatment process. Providers referring patients can leverage patient motivations and utilize their relationship with the patient to determine the appropriate timing and personalize discussion with the patient regarding GC and GT.
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