Skip to main content
Top
Published in: Journal of Genetic Counseling 5/2009

01-10-2009 | Original Research

Telephoned BRCA1/2 Genetic Test Results: Prevalence, Practice, and Patient Satisfaction

Authors: L. Baumanis, J. P. Evans, N. Callanan, L. R. Susswein

Published in: Journal of Genetic Counseling | Issue 5/2009

Login to get access

Abstract

While the traditional model of genetic evaluation for breast cancer risk recommended face-to-face disclosure of genetic testing results, BRCA1/2 testing results are increasingly provided by telephone. The few existing studies on telephone genetic counseling provide conflicting results about its desirability and efficacy. The current study aimed to (1) Estimate the prevalence among genetic counselors of providing BRCA1/2 genetic test results by phone (2) Assess patient satisfaction with results delivered by telephone versus in-person. A survey was sent to members of the Familial Cancer Risk Counseling Special Interest Group via the NSGC listserve and was completed by 107 individuals. Additionally, 137 patients who had received BRCA genetic testing results either by phone or in-person at UNC Chapel Hill Cancer Genetics Clinic were surveyed regarding satisfaction with the mode of their BRCA1/2 results delivery. The genetic counseling survey revealed that the majority of responding counselors (92.5%) had delivered BRCA1/2 genetic test results by telephone. Patients having received results either in person or by phone reported no difference in satisfaction. Most patients chose to receive results by phone and those given a choice of delivery mode reported significantly higher satisfaction than those who did not have a choice. Those who waited less time to receive results once they knew they were ready also reported higher satisfaction. This study found supportive results for the routine provision of BRCA1/2 genetic test results by telephone. Results suggest that test results should be delivered as swiftly as possible once available and that offering patients a choice of how to receive results is desirable. These are especially important issues as genetic testing becomes more commonplace in medicine.
Appendix
Available only for authorised users
Literature
go back to reference American College of Medical Genetics Foundation. (1999). Genetic susceptibility to breast and ovarian cancer: Assessment, counseling and testing guidelines. New York: American College of Medical Genetics Foundation. American College of Medical Genetics Foundation. (1999). Genetic susceptibility to breast and ovarian cancer: Assessment, counseling and testing guidelines. New York: American College of Medical Genetics Foundation.
go back to reference Baker, D. L., Schuette, J. L., & Uhlmann, W. R. (eds). (1998). A guide to genetic counseling. New York: Wiley. Baker, D. L., Schuette, J. L., & Uhlmann, W. R. (eds). (1998). A guide to genetic counseling. New York: Wiley.
go back to reference International Huntington Association and World Federation of Neurological Research Group on Huntington’s Chorea. (1994). Guidelines for the molecular genetics predictive test in Huntington’s disease. Neurology, 44, 1533–1536. International Huntington Association and World Federation of Neurological Research Group on Huntington’s Chorea. (1994). Guidelines for the molecular genetics predictive test in Huntington’s disease. Neurology, 44, 1533–1536.
go back to reference Jenkins, J., Calzone, K. A., Dimond, E., Liewehr, D. J., Steinberg, S. M., Jourkiv, O., et al. (2007). Randomized comparison of phone versus in-person BRCA1/2 predisposition genetic test result disclosure counseling. Genetics in Medicine, 9(8), 487–495. doi:10.1097/GIM.0b013e31812e6220.PubMedCrossRef Jenkins, J., Calzone, K. A., Dimond, E., Liewehr, D. J., Steinberg, S. M., Jourkiv, O., et al. (2007). Randomized comparison of phone versus in-person BRCA1/2 predisposition genetic test result disclosure counseling. Genetics in Medicine, 9(8), 487–495. doi:10.​1097/​GIM.​0b013e31812e6220​.PubMedCrossRef
go back to reference Klemp, J. R., O’Dea, A., Chamberlain, C., & Fabian, C. J. (2005). Patient satisfaction of BRCA1/2 genetic testing by women at high risk for breast cancer participating in a prevention trial. Familial Cancer, 4, 279–284. doi:10.1007/s10689-005-1474-y.PubMedCrossRef Klemp, J. R., O’Dea, A., Chamberlain, C., & Fabian, C. J. (2005). Patient satisfaction of BRCA1/2 genetic testing by women at high risk for breast cancer participating in a prevention trial. Familial Cancer, 4, 279–284. doi:10.​1007/​s10689-005-1474-y.PubMedCrossRef
go back to reference Peshkin, B. N., DeMarco, T. A., Graves, K. D., Brown, K., Nusbaum, R. H., Moglia, D., et al. (2008). Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial. Genetic Testing, 12(1), 37–52. doi:10.1089/gte.2006.0525.PubMedCrossRef Peshkin, B. N., DeMarco, T. A., Graves, K. D., Brown, K., Nusbaum, R. H., Moglia, D., et al. (2008). Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial. Genetic Testing, 12(1), 37–52. doi:10.​1089/​gte.​2006.​0525.PubMedCrossRef
go back to reference Petrucelli, N., Daly, M. B., Culver, J. O., Levy-Lahad, E., & Feldman, G. L. (2005). BRCA1 and BRCA2 hereditary breast/ovarian cancer. Retrieved April, 2, 2006, from http://www.genereviews.org. Petrucelli, N., Daly, M. B., Culver, J. O., Levy-Lahad, E., & Feldman, G. L. (2005). BRCA1 and BRCA2 hereditary breast/ovarian cancer. Retrieved April, 2, 2006, from http://​www.​genereviews.​org.
go back to reference Schneider, K. (2002). Counseling about cancer: Strategies for genetic counseling (2nd ed.). New York: Wiley. Schneider, K. (2002). Counseling about cancer: Strategies for genetic counseling (2nd ed.). New York: Wiley.
go back to reference Young, T. (1993). Issues in quality assurance explored: is telephone counseling an oxymorom? Perspectives in Genetic Counseling, 15(2), 2–3. Young, T. (1993). Issues in quality assurance explored: is telephone counseling an oxymorom? Perspectives in Genetic Counseling, 15(2), 2–3.
Metadata
Title
Telephoned BRCA1/2 Genetic Test Results: Prevalence, Practice, and Patient Satisfaction
Authors
L. Baumanis
J. P. Evans
N. Callanan
L. R. Susswein
Publication date
01-10-2009
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 5/2009
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-009-9238-8

Other articles of this Issue 5/2009

Journal of Genetic Counseling 5/2009 Go to the issue