Abstract
Telephone genetic counseling (TC) for hereditary breast/ovarian cancer risk has been associated with positive outcomes in high risk women. However, little is known about how patients perceive TC. As part of a randomized trial of TC versus usual care (UC; in-person genetic counseling), we compared high risk women’s perceptions of: (1) overall satisfaction with genetic counseling; (2) convenience; (3) attentiveness during the session; (4) counselor effectiveness in providing support; and (5) counselor ability to recognize emotional responses during the session. Among the 554 participants (TC, N = 272; UC, N = 282), delivery mode was not associated with self-reported satisfaction. However, TC participants found counseling significantly more convenient than UC participants (OR = 4.78, 95 % CI = 3.32, 6.89) while also perceiving lower levels of support (OR = 0.56, 95 % CI = 0.40–0.80) and emotional recognition (OR = 0.53, 95 % CI = 0.37–0.76). In exploratory analyses, we found that non-Hispanic white participants reported higher counselor support in UC than in TC (69.4 % vs. 52.8 %; OR = 3.06, 95 % CI = 1.39–6.74), while minority women perceived less support in UC vs. TC (58.3 % vs. 38.7 %; OR = 0.80, 95 % CI = 0.39–1.65). We discuss potential research and practice implications of these findings which may further improve the effectiveness and utilization of TC.
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Acknowledgements
The authors acknowledge contributions of genetic counselors Karen Brown, Diana Moglia Tully, Alexandra Lebensohn, and Emily Dalton. In addition, we thank our research assistants for performing telephone interviews: Elizabeth Poggi, Kara-Grace Leventhal, Lisa Moss, Sarah Kelleher, Patty Vegella, Angie Tong, Lesley King, Lisa Feeley, Lauren Vanhusen, Kathy Corso, and Liz Zeida. We also thank Susan Marx and Aryana Jacobs for assistance with manuscript preparation. Finally, we are grateful to all of the women who participated in the study.
Funding
The study was supported by Grants R01 CA108933 and P30 CA051008 from the National Cancer Institute and by the Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.
Conflict of Interest
Ms. Peshkin, Mr. Kelly, Ms. Similuk, Ms. DeMarco, Dr. Valdimarsdottir, Ms. Forman, Ms. Rispoli Joines, Ms. Davis, Ms. McKinnon, Dr. Graves, Dr. Isaacs, Dr. Wood, and Ms. Jandorf declare that they have no conflict of interest. Ms. Nusbaum is an employee of GeneDx, but was employed at Georgetown University during all patient accrual and data collection. Dr. Hooker is an employee of NextGxDx, but was employed at Georgetown University during her participation in the study. Ms. McCormick has obtained paid compensation from Myriad Genetics. Dr. Garber has research funding from Myriad Genetics. Dr. Schwartz serves as an uncompensated member of the Scientific Advisory Board for InformedDNA (St. Petersburg, FL).
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible institutional review committees of the collaborating institutions, national guidelines, and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all individual participants included in the study.
Animal Studies
No animal studies were carried out by the authors for this article.
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ClinicalTrials.gov Identifier: NCT00287898
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Peshkin, B.N., Kelly, S., Nusbaum, R.H. et al. Patient Perceptions of Telephone vs. In-Person BRCA1/BRCA2 Genetic Counseling. J Genet Counsel 25, 472–482 (2016). https://doi.org/10.1007/s10897-015-9897-6
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DOI: https://doi.org/10.1007/s10897-015-9897-6