Abstract
The traditional model of providing cancer predictive testing services is changing. Many genetic centres are now offering a choice to patients in how they receive their results instead of the typical face-to-face disclosure. In view of this shift in practice and the increasing demand on the ROI cancer predictive testing service, a 2 year retrospective study on patient preference in how to receive a Breast Cancer (BRCA) predictive result was carried out. Results showed that 71.7 % of respondents would have liked to have the option of obtaining their results by telephone or by letter. However, when asked about their actual experience of BRCA predictive results disclosure 40.6 % did still value the face-to-face contact, while 44.9 % would still have preferred to receive results by either post or telephone. No significant difference was found between males and females (p > 0.05) and those who tested negative or positive for the BRCA mutation (p > 0.05) in wanting a choice in how their results were disclosed. While the majority expressed a wish to have a choice in how to receive their results, it is important not to underestimate the value of a face-to-face encounter in these circumstances.
Similar content being viewed by others
References
Akaike, H. (1974). A new look at the statistical model identification. IEEE Transactions on Automatic Control, 19(6), 716–723.
Aktan-Collan, K., Mecklin, J. P., de la Chapelle, A., Peltomaki, P., Uutela, A., & Kaariainen, H. (2000). Evaluation of a counselling protocol for predicitive genetic testing for hereditary non-polyposis colorectal cancer. Journal of Medical Genetics, 37, 108–13.
Baumanis, L., Evans, J. P., Callanan, N., & Susswein, L. R. (2009). Telephoned BRCA1/2 genetic test results: prevalence, practice, and patient satisfaction. Journal of Genetic Couselling, 18, 447–463.
Beran, T. M., Stanton, A. L., Kwan, L., Seldon, J., Bower, J. E., Vodermaier, A., & Ganz, P. A. (2008). The trajectory of psychological impact in BRCA ½ genetic testing: does time heal? Annals of Behaviour Medicine, 36, 107–16.
Berliner, J. L., & Fay, A. M. (2007). Risk assessment and genetic counselling for hereditary breast and ovarian cancer: recommendations of the national society of genetic counselors. Journal of Genetic Counselling, 16, 241–260.
Bosch, N., Junyent, N., Gadea, N., Brunet, J., Ramon Cajal, T., Torres, A., Grana, B., Velasco, A., Darder, E., Mensa, I., & Balmana, J. (2012). Breast, 21, 755–60.
Bradbury, A. R., Patrick-Miller, L., Fetzer, D., Egleston, B., Cummings, S. A., Forman, A., Bealin, L., Peterson, C., Corbman, M., O’Connell, J., & Daly, M. B. (2011). Genetic counselor opinions of and experiences with telephone communication of BRCA1/2 test results. Clinical Genetics, 79(2), 125–31.
Burnham, K. P., & Anderson, D. R. (2002). Model selection and multimodel inference: A practical information-theoretic approach (2nd ed.). New York: Springer-Velag.
Halbert, C. H., Stopfer, J. E., McDonald, J., Weathers, B., Collier, A., Troxel, A. B., & Domchek, S. (2011). Long term reactions to genetic testing for BRCA 1 & 2 mutations: does time heal women’s concerns? Journal of Clinical Oncology, 29, 4302–4306.
Hamilton, J. G., Lobel, M., & Moyer, A. (2009). Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta analytic review. Health Psychology, 28, 510–518.
Helmes, A. W., Culver, J. O., & Bowen, D. J. (2006). Results of a randomized study of telephone versus in-person breast cancer risk counselling. Patient Education and Counselling, 64, 96–103.
Howlader N., Noone A.M., Krapcho M., et al. (eds). (2012). SEER Cancer Statistics Review, 1975–2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, April 2012.
Jenkins, J., Calzone, K. A., Dimond, E., Liewehr, D. J., Steinberg, S. M., Jourkiv, O., Klein, P., Soballe, P. W., Prindiville, S. A., & Kirsch, I. R. (2007). Randomizes comparison of phone versus in-person BRCA1/2 predisposition genetic test result disclosure counselling. Genetics in Medicine, 9, 487–495.
Klemp, J. R., O’Dea, A., Chamberlain, C., & Fabian, C. J. (2005). Patient satisfaction of BRCA ½ genetic testing by women at high risk for breast cancer participating in a prevention trial. Familial Cancer, 4, 279–284.
Liede, A., Metcalfe, K., Hanna, D., Hoodfar, E., Snyder, C., Durham, C., Lynch, H. T., & Narod, A. (2000). Evaluation of the needs of male carriers of mutations in BRCA 1 or BRCA 2 who have undergone genetic counselling. American Journal of Human Genetics, 67, 1494–1504.
Lodder, L., Frets, P. G., Trijsburg, R. W., Tibben, A., Meijers-Heijboer, E. J., Duivenvoorden, H. J., Wagner, A., van der Meer, C. A., Devilee, P., Cornelisse, C. J., & Niermeijer, M. F. (2001). Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. European Journal of Human Genetics, 9, 492–500.
R Development Core Team (2012). R: A language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing. See http://www.R-project.org
Rice C.D., Ruschman J.G., Martin L.J., Manders J.B., Miller E. (2009). Retrospective comparison of patient outcomes after in-person and telephone results disclosure counselling for BRCA1/2 genetic testing. Familial Cancer.
Sangha, K., Dircks, A., & Langlois, S. (2003). Assessment of the effectiveness of genetic counseling by telephone compared to a clinic visit. Journal of Genetic Counseling, 12(2), 171–184.
Struewing, J. P., Lerman, C., Kase, R. G., Giambarresi, T. R., & Tucker, M. A. (1995). Anticpated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiology Biomakers and prevention, 4, 169–173.
Sutphen, R., Davila, B., Shappell, H., Holtje, T., Vadaparampil, S., Friedman, S., Toscano, M., & Armstrong, J. (2010). Real world experience with cancer genetic counselling via telephone. Familial Cancer, 9(4), 681–9.
Trepanier, A., Aherns, M., McKinnon, W., Peters, J., Stopfer, J., & Grumet, S. C. (2004). Genetic cancer risk assessment and counselling: recommendation of the national society of genetic counsellors. Journal of Genetic Counselling, 13, 83–114.
Tsu, R. C., Burm, M. L., Jennifer, A. G., & Sells, C. W. (2002). Telephone vs. face-to-face notification of HIV reults in high risk youth. Journal of Adolescent Health, 30, 154–160.
Wham, D., Vu, T., Chan-Smutko, G., Kobelka, C., Urbauer, D., & Heald, B. (2010). Assessment of clinical practices among cancer genetic counselors. Familial Cancer, 9, 459–68.
Wolcott, H. (1990). Writing up qualitative research. London: Sage.
Zilliacus, E. M., Meiser, B., Lobb, E. A., Kirk, J., Warwick, L., & Tucker, K. (2010). Women’s experience of telehealth cancer genetic counselling. Journal of Genetic Counselling, 19, 463–72.
Conflict of Interest
The authors declare that they have no conflict of interest. This article does not contain any studies with human participants or animals preformed by any of the authors.
Ethical Approval
All procedures preformed in studies involving human particiapants were in accordance with ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. For this type of study formal consent is not required.
Informed Consent
Informed consent was optained from all individual participants included in the study.
Author information
Authors and Affiliations
Corresponding author
Appendix A
Appendix A
Rights and permissions
About this article
Cite this article
O’Shea, R., Meany, M., Carroll, C. et al. Predictive Genetic Testing and Alternatives to Face to Face Results Disclosure: A Retrospective Review of Patients Preference for Alternative Modes of BRCA 1 and 2 Results Disclosure in the Republic of Ireland. J Genet Counsel 25, 422–431 (2016). https://doi.org/10.1007/s10897-015-9887-8
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-015-9887-8