Phuong L Mai1, Marion Piedmonte2, Paul K Han3, Richard P Moser4, Joan L Walker5, Gustavo Rodriguez6, John Boggess7, Thomas J Rutherford8, Oliver Zivanovic9, David E Cohn10, J Tate Thigpen11, Robert M Wenham12, Michael L Friedlander13, Chad A Hamilton14, Jamie Bakkum-Gamez15, Alexander B Olawaiye16, Martee L Hensley17, Mark H Greene18, Helen Q Huang19, Lari Wenzel20. 1. Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD 20852-9772, United States. Electronic address: maip@mail.magee.edu. 2. NRG Oncology, Statistical and Data Center, Roswell Park Cancer Institute, Buffalo, NY 14263, United States. Electronic address: marion.piedmonte@gmail.com. 3. Center for Outcomes Research and Evaluation, Maine Medical Center Research Institute, Portland, ME 04101, United States. Electronic address: hanp@mmc.org. 4. Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD 20850, United States. Electronic address: moserr@mail.nih.gov. 5. Stephenson Cancer Center, Department of Gynecologic Oncology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, United States. Electronic address: joan-walker@ouhsc.edu. 6. Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, NorthShore University HealthSystem, Evanston, IL 60201, United States. Electronic address: GRodriguez@northshore.org. 7. Gynecologic Oncology Program, University of North Carolina, Chapel Hill, NC 27514, United States. Electronic address: john_boggess@med.unc.edu. 8. Gynecologic Oncology, Yale University School of Medicine, New Haven, CT 06520, United States. Electronic address: thomas.rutherford@yale.edu. 9. Innovative Surgical Technology, Gynecology Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY 10022, United States. Electronic address: zivanovo@mskcc.org. 10. Division of Gynecologic Oncology, Ohio State University College of Medicine, Columbus, OH, United States. Electronic address: David.Cohn@osumc.edu. 11. Division of Medical Oncology, University of Mississippi Medical Center, Jackson, MS 39216, United States. Electronic address: jtthigpen@att.net. 12. Department of Gynecologic Oncology, Program of Chemical Biology and Molecular Medicine, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL 33612, United States. Electronic address: Robert.Wenham@moffitt.org. 13. Medical Oncology, The Prince of Wales Hospital, Randwick, NSW 2031, Australia. Electronic address: michael.friedlander@sesiahs.health.nsw.gov.au. 14. Gynecologic Cancer Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD 20889, United States. Electronic address: chad.a.hamilton2.mil@mail.mil. 15. Department of GYN Surgery, Mayo Clinic, Rochester, MN 55905, United States. Electronic address: bakkum.jamie@mayo.edu. 16. Department of Obstetrics, Gynecology and Reproductive Sciences, Magee-Womens Hospital of UPMC, University of Pittsburgh School of Medicine, Pittsburgh, PA 15143, United States. Electronic address: olawaiyea@mail.magee.edu. 17. Gynecologic Medical Oncology Service, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY 10065, United States. Electronic address: hensleym@mskcc.org. 18. Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD 20852-9772, United States. Electronic address: greenem@mail.nih.gov. 19. NRG Oncology, Statistical and Data Center, Roswell Park Cancer Institute, Buffalo, NY 14263, United States. Electronic address: huangh@nrgoncology.org. 20. Center for Health Policy Research, University of California, Irvine, Irvine, CA 92697, United States. Electronic address: lwenzel@uci.edu.
Abstract
OBJECTIVES: Women at increased genetic risk of ovarian cancer (OC) are recommended to have risk-reducing salpingo-oophorectomy (RRSO) after completion of reproductive planning. Effective screening has not been established, and novel screening modalities are being evaluated. METHODS: Participants chose either RRSO or a novel OC screening regimen (OCS) as their risk management option, and provided demographic and other data on BRCA mutation status, cancer worry, perceived intervention risks/benefits, perceived cancer risk, and quality-of-life at enrollment. We performed univariate and multivariate analyses to evaluate factors influencing decision between RRSO and OCS. RESULTS: Of 2287 participants enrolled, 904 (40%) chose RRSO and 1383 (60%) chose OCS. Compared with participants choosing OCS, participants choosing RRSO were older (p<0.0001), more likely to carry deleterious BRCA1/2 mutations (p<0.0001), perceive RRSO as effective, be more concerned about surgical harms and OCS limitations, and report higher perceived OC risk and OC-related worry. OCS participants were more likely to perceive screening as effective, be more concerned about menopausal symptoms, infertility, and loss of femininity, and report better overall quality-of-life. Twenty-four percent of participants believed they would definitely develop OC, and half estimated their lifetime OC risk as >50%, both higher than objective risk estimates. CONCLUSIONS: Cancer worry, BRCA1/2 mutation status, and perceived intervention-related risks and benefits were associated with choosing between RRSO and OCS. Efforts to promote individualized, evidence-based, shared medical decision-making among high-risk women facing management choices should focus on conveying accurate OC risk estimates, clarifying the current understanding of intervention-related benefits and limitations, and addressing OC worry. Published by Elsevier Inc.
OBJECTIVES:Women at increased genetic risk of ovarian cancer (OC) are recommended to have risk-reducing salpingo-oophorectomy (RRSO) after completion of reproductive planning. Effective screening has not been established, and novel screening modalities are being evaluated. METHODS:Participants chose either RRSO or a novel OC screening regimen (OCS) as their risk management option, and provided demographic and other data on BRCA mutation status, cancer worry, perceived intervention risks/benefits, perceived cancer risk, and quality-of-life at enrollment. We performed univariate and multivariate analyses to evaluate factors influencing decision between RRSO and OCS. RESULTS: Of 2287 participants enrolled, 904 (40%) chose RRSO and 1383 (60%) chose OCS. Compared with participants choosing OCS, participants choosing RRSO were older (p<0.0001), more likely to carry deleterious BRCA1/2 mutations (p<0.0001), perceive RRSO as effective, be more concerned about surgical harms and OCS limitations, and report higher perceived OC risk and OC-related worry. OCS participants were more likely to perceive screening as effective, be more concerned about menopausal symptoms, infertility, and loss of femininity, and report better overall quality-of-life. Twenty-four percent of participants believed they would definitely develop OC, and half estimated their lifetime OC risk as >50%, both higher than objective risk estimates. CONCLUSIONS:Cancer worry, BRCA1/2 mutation status, and perceived intervention-related risks and benefits were associated with choosing between RRSO and OCS. Efforts to promote individualized, evidence-based, shared medical decision-making among high-risk women facing management choices should focus on conveying accurate OC risk estimates, clarifying the current understanding of intervention-related benefits and limitations, and addressing OC worry. Published by Elsevier Inc.
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