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06.08.2016 | Original Research

Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families

verfasst von: Kristina G. Flores, Laurie E. Steffen, Christopher J. McLouth, Belinda E. Vicuña, Amanda Gammon, Wendy Kohlmann, Lucretia Vigil, Zoneddy R. Dayao, Melanie E. Royce, Anita Y. Kinney

Erschienen in: Journal of Genetic Counseling | Ausgabe 3/2017

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Abstract

Scientific advances have allowed the development of multiplex gene-panels to assess many genes simultaneously in women who have tested negative for BRCA1/2. We examined correlates of interest in testing for genes that confer modest and moderate breast cancer risk and risk communication preferences for women from BRCA negative families. Female first-degree relatives of breast cancer patients who tested negative for BRCA1/2 mutations (N = 149) completed a survey assessing multiplex genetic testing interest and risk communication preferences. Interest in testing was high (70 %) and even higher if results could guide risk-reducing behavior changes such as taking medications (79 %). Participants preferred to receive genomic risk communications from a variety of sources including: primary care physicians (83 %), genetic counselors (78 %), printed materials (71 %) and the web (60 %). Factors that were independently associated with testing interest were: perceived lifetime risk of developing cancer (odds ratio (OR) = 1.67: 95 % confidence interval (CI) 1.06–2.65) and high cancer worry (OR = 3.12: CI 1.28–7.60). Findings suggest that women from BRCA1/2 negative families are a unique population and may be primed for behavior change. Findings also provide guidance for clinicians who can help develop genomic risk communications, promote informed decision making and customize behavioral interventions.

Anderson, A. E., Flores, K. G., Boonyasiriwat, W., Gammon, A., Kohlmann, W., Birmingham, W. C., & Kinney, A. Y. (2014). Interest and informational preferences regarding genomic testing for modest increases in colorectal cancer risk. Public Health Genomics, 17(1), 48–60.CrossRefPubMedPubMedCentral

Bottorff, J. L., Ratner, P. A., Balneaves, L. G., Richardson, C. G., McCullum, M., Hack, T., & Buxton, J. (2002). Women's interest in genetic testing for breast cancer risk: the influence of sociodemographics and knowledge. Cancer Epidemiology, Biomarkers & Prevention, 11(1), 89–95.

Bradbury, A. R., Patrick-Miller, L., & Domchek, S. (2015a). Multiplex genetic testing: reconsidering utility and informed consent in the era of next-generation sequencing. Genetics in Medicine, 17(2), 97–98.CrossRefPubMed

Bradbury, A. R., Patrick-Miller, L. J., Egleston, B. L., DiGiovanni, L., Brower, J., Harris, D., & Domchek, S. M. (2015b). Patient feedback and early outcome data with a novel tiered-binned model for multiplex breast cancer susceptibility testing. Genetics in Medicine, 18(1), 25–33.CrossRefPubMed

Cameron, L. D., & Diefenbach, M. A. (2001). Responses to information about psychosocial consequences of genetic testing for breast cancer susceptibility: influences of cancer worry and risk perceptions. Journal of Health Psychology, 6(1), 47–59.CrossRefPubMed

Cameron, L. D., & Muller, C. (2009). Psychosocial aspects of genetic testing. Current Opinion in Psychiatry, 22(2), 218–223.CrossRefPubMed

Cameron, L. D., & Reeve, J. (2006). Risk perceptions, worry, and attitudes about genetic testing for breast cancer susceptibility. Psychology & Health, 21(2), 211–230.CrossRef

Codori, A. M., Petersen, G. M., Miglioretti, D. L., Larkin, E. K., Bushey, M. T., Young, C., & Booker, S. V. (1999). Attitudes toward colon cancer gene testing: factors predicting test uptake. Cancer Epidemiology, Biomarkers & Prevention, 8(4 Pt 2), 345–351.

Cohn, J., Blazey, W., Tegay, D., Harper, B., Koehler, S., Laurent, B., Krishnamachari, B. (2015). Physician risk assessment knowledge regarding BRCA Genetics Testing. Journal of Cancer Education, 30(3), 573–579.CrossRefPubMed

Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. The New England Journal of Medicine, 372(9), 793–795.CrossRefPubMedPubMedCentral

Cragun, D., Bonner, D., Kim, J., Akbari, M. R., Narod, S. A., Gomez-Fuego, A., & Pal, T. (2015). Factors associated with genetic counseling and BRCA testing in a population-based sample of young black women with breast cancer. Breast Cancer Research and Treatment, 151(1), 169–176.CrossRefPubMedPubMedCentral

Croyle, R. T., & Lerman, C. (1993). Interest in genetic testing for colon cancer susceptibility: cognitive and emotional correlates. Preventive Medicine, 22(2), 284–292.CrossRefPubMed

Daly, M. B., Pilarski, R., Axilbund, J. E., Berry, M., Buys, S. S., Crawford, B., & Darlow, S. (2016). Genetic/familial high-risk assessment: breast and ovarian, Version 2.2015. Journal of the National Comprehensive Cancer Network, 14(2), 153–162.CrossRefPubMed

Desmond, A., Kurian, A. W., Gabree, M., Mills, M. A., Anderson, M. J., Kobayashi, Y., & Ellisen, L. W. (2015). Clinical Actionability of Multigene Panel Testing for Hereditary Breast and Ovarian Cancer Risk Assessment. JAMA Oncol, 1(7), 943–951.CrossRefPubMed

Easton, D. F., Pharoah, P. D., Antoniou, A. C., Tischkowitz, M., Tavtigian, S. V., Nathanson, K. L., & Foulkes, W. D. (2015). Gene-panel sequencing and the prediction of breast-cancer risk. The New England Journal of Medicine, 372(23), 2243–2257.CrossRefPubMedPubMedCentral

Evans, D. G., Warwick, J., Astley, S. M., Stavrinos, P., Sahin, S., Ingham, S., & Howell, A. (2012). Assessing individual breast cancer risk within the U.K. National Health Service Breast Screening Program: a new paradigm for cancer prevention. Cancer Prevention Research (Philadelphia, Pa.), 5(7), 943–951.CrossRef

Evans, D. G., Barwell, J., Eccles, D. M., Collins, A., Izatt, L., Jacobs, C., Murray, A. (2014). The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services. Breast Cancer Research, 16(5), 442.

Gibbons, A., & Groarke, A. (2015). Can risk and illness perceptions predict breast cancer worry in healthy women? J Health Psychol. doi:10.1177/1359105315570984.

Graves, K. D., Wenzel, L., Schwartz, M. D., Luta, G., Wileyto, P., Narod, S., & Halbert, C. H. (2010). Randomized controlled trial of a psychosocial telephone counseling intervention in BRCA1 and BRCA2 mutation carriers. Cancer Epidemiology, Biomarkers & Prevention, 19(3), 648–654.CrossRef

Graves, K. D., Peshkin, B. N., Luta, G., Tuong, W., & Schwartz, M. D. (2011). Interest in genetic testing for modest changes in breast cancer risk: implications for SNP testing. Public Health Genomics, 14(3), 178–189.CrossRefPubMedPubMedCentral

Henneman, L., Vermeulen, E., van El, C. G., Claassen, L., Timmermans, D. R., & Cornel, M. C. (2013). Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. European Journal of Human Genetics, 21(8), 793–799.CrossRefPubMed

Himes, D. O., Clayton, M. F., Donaldson, G. W., Ellington, L., Buys, S. S., & Kinney, A. Y. (2016). Breast cancer risk perceptions among relatives of women with uninformative negative BRCA1/2 test results: the moderating effect of the amount of shared information. Journal of Genetic Counseling, 25(2), 258–269.

Hoberg-Vetti, H., Bjorvatn, C., Fiane, B. E., Aas, T., Woie, K., Espelid, H., & Hoogerbrugge, N. (2016). BRCA1/2 testing in newly diagnosed breast and ovarian cancer patients without prior genetic counselling: the DNA-BONus study. European Journal of Human Genetics, 24(6), 881–888.CrossRefPubMed

IPAQ. (2015) International Physical Activity Questionnaire. WWW.ipaq.ki.se. Accessed March 3, 2015.

Jensen, J. D., Bernat, J. K., Davis, L. A., & Yale, R. (2010). Dispositional cancer worry: convergent, divergent, and predictive validity of existing scales. Journal of Psychosocial Oncology, 28(5), 470–489.CrossRefPubMedPubMedCentral

Kabat, G. C., Matthews, C. E., Kamensky, V., Hollenbeck, A. R., & Rohan, T. E. (2015). Adherence to cancer prevention guidelines and cancer incidence, cancer mortality, and total mortality: a prospective cohort study. The American Journal of Clinical Nutrition, 101(3), 558–569.CrossRefPubMedPubMedCentral

Kelly, K. M., Andrews, J. E., Case, D. O., Allard, S. L., & Johnson, J. D. (2007). Information seeking and intentions to have genetic testing for hereditary cancers in rural and Appalachian Kentuckians. The Journal of Rural Health, 23(2), 166–172.CrossRefPubMed

Kinney, A. Y., Butler, K. M., Schwartz, M. D., Mandelblatt, J. S., Boucher, K. M., Pappas, L. M., & Campo, R. A. (2014). Expanding access to BRCA1/2 genetic counseling with telephone delivery: a cluster randomized trial. Journal of the National Cancer Institute, 106(12). doi:10.1093/jnci/dju328.

Kotsopoulos, J., Metcalfe, K., Alston, J., Nikitina, D., Ginsburg, O., Eisen, A., & Narod, S. A. (2014). Prospective study of high-risk, BRCA1/2-mutation negative women: the 'negative study. BMC Cancer, 14, 221.CrossRefPubMedPubMedCentral

Lebo, P. B., Quehenberger, F., Kamolz, L. P., & Lumenta, D. B. (2015). The Angelina effect revisited: exploring a media-related impact on public awareness. Cancer, 121(22), 3959–3964.CrossRefPubMed

Lerman, C., Daly, M., Masny, A., & Balshem, A. (1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. Journal of Clinical Oncology, 12(4), 843–850.CrossRefPubMed

Li, H., Feng, B., Miron, A., Chen, X., Beesley, J., Bimeh, E., & Goldgar, D. E. (2016). Breast cancer risk prediction using a polygenic risk score in the familial setting: a prospective study from the breast cancer family registry and kConFab. Genetics in Medicine. doi:10.1038/gim.2016.43.

Lincoln, S. E., Kobayashi, Y., Anderson, M. J., Yang, S., Desmond, A. J., Mills, M. A.,. Ellisen, L. W. (2015). A systematic comparison of traditional and Multigene panel testing for hereditary breast and ovarian cancer genes in more than 1000 patients. The Journal of Molecular Diagnostics, 17(5), 533–544.CrossRefPubMed

Lipkus, I. M., Kuchibhatla, M., McBride, C. M., Bosworth, H. B., Pollak, K. I., Siegler, I. C., & Rimer, B. K. (2000). Relationships among breast cancer perceived absolute risk, comparative risk, and worries. Cancer Epidemiology, Biomarkers & Prevention, 9(9), 973–975.

Markossian, T. W., & Hines, R. B. (2012). Disparities in late stage diagnosis, treatment, and breast cancer-related death by race, age, and rural residence among women in Georgia. Women & Health, 52(4), 317–335.CrossRef

Mavaddat, N., Pharoah, P. D., Michailidou, K., Tyrer, J., Brook, M. N., Bolla, M. K., & Garcia-Closas, M. (2015). Prediction of breast cancer risk based on profiling with common genetic variants. Journal of the National Cancer Institute, 107(5).

McBride, C. M., Birmingham, W. C., & Kinney, A. Y. (2015). Health psychology and translational genomic research: Bringing innovation to cancer-related behavioral interventions. The American Psychologist, 70(2), 91–104.CrossRefPubMed

McCarthy, A. M., Bristol, M., Fredricks, T., Wilkins, L., Roelfsema, I., Liao, K., & Armstrong, K. (2013). Are physician recommendations for BRCA1/2 testing in patients with breast cancer appropriate? A population-based study. Cancer, 119(20), 3596–3603.CrossRefPubMedPubMedCentral

McCaul, K. D., & Goetz, P. W. Worry. (2015) A paper on the National Cancer Institute website http://cancercontrol.cancer.gov/Brp/constructs/worry/worry.pdf Accessed March 30, 2015.

McGuire, A. L., Diaz, C. M., Wang, T., & Hilsenbeck, S. G. (2009). Social networkers' attitudes toward direct-to-consumer personal genome testing. The American Journal of Bioethics, 9(6–7), 3–10.CrossRefPubMedPubMedCentral

Meisel, S. F., Carere, D. A., Wardle, J., Kalia, S. S., Moreno, T. A., Mountain, J. L., & Group, P. G. S (2015). Explaining, not just predicting, drives interest in personal genomics. Genome Medicine, 7(1), 74.CrossRefPubMedPubMedCentral

Milhabet, I., Duprez, C., Krzeminski, A., & Christophe, V. (2013). Cancer risk comparative perception and overscreening behaviours of non-carriers from BRCA1/2 families. European Journal of Cancer Care (Engl), 22(4), 540–548.CrossRef

Moyer, V. A., & Force, U. S. P. S. T. (2013). Medications to decrease the risk for breast cancer in women: recommendations from the U.S. Preventive Services Task Force recommendation statement. Annals of Internal Medicine, 159(10), 698–708.PubMed

Nelson, H. D., Smith, M. E., Griffin, J. C., & Fu, R. (2013). Use of medications to reduce risk for primary breast cancer: a systematic review for the U.S. Preventive Services Task Force. Annals of Internal Medicine, 158(8), 604–614.CrossRefPubMed

Nguyen-Pham, S., Leung, J., & McLaughlin, D. (2014). Disparities in breast cancer stage at diagnosis in urban and rural adult women: a systematic review and meta-analysis. Annals of Epidemiology, 24(3), 228–235.CrossRefPubMed

Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., & Garber, J. E. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24(4), 700–706.CrossRefPubMed

Petersen, K. E., Johnsen, N. F., Olsen, A., Albieri, V., Olsen, L. K., Dragsted, L. O., & Egeberg, R. (2015). The combined impact of adherence to five lifestyle factors on all-cause, cancer and cardiovascular mortality: a prospective cohort study among Danish men and women. The British Journal of Nutrition, 113(5), 849–858.CrossRefPubMed

Powell, K. P., Cogswell, W. A., Christianson, C. A., Dave, G., Verma, A., Eubanks, S., & Henrich, V. C. (2012). Primary care physicians' awareness, experience and opinions of direct-to-consumer genetic testing. Journal of Genetic Counseling, 21(1), 113–126.CrossRefPubMed

Powers, J., & Stopfer, J. E. (2014). Risk assessment, genetic counseling, and clinical care for hereditary breast cancer. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 43(3), 361–373.CrossRefPubMed

Ramirez, A. G., Chalela, P., Gallion, K. J., Munoz, E., Holden, A. E., Burhansstipanov, L., Suarez, L. (2015). Attitudes Toward Breast Cancer Genetic Testing in Five Special Population Groups J Health Dispar Res Pract, 8(4), 124–135.

Roberts, J. S., & Ostergren, J. (2013). Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies. Curr Genet Med Rep, 1(3), 182–200.CrossRefPubMedPubMedCentral

Selkirk, C. G., Vogel, K. J., Newlin, A. C., Weissman, S. M., Weiss, S. M., Wang, C. H., & Hulick, P. J. (2014). Cancer genetic testing panels for inherited cancer susceptibility: the clinical experience of a large adult genetics practice. Familial Cancer, 13(4), 527–536.CrossRefPubMed

Sussner, K. M., Edwards, T. A., Thompson, H. S., Jandorf, L., Kwate, N. O., Forman, A., & Valdimarsdottir, H. B. (2011). Ethnic, racial and cultural identity and perceived benefits and barriers related to genetic testing for breast cancer among at-risk women of African descent in New York City. Public Health Genomics, 14(6), 356–370.CrossRefPubMedPubMedCentral

Teng, I., & Spigelman, A. (2014). Attitudes and knowledge of medical practitioners to hereditary cancer clinics and cancer genetic testing. Familial Cancer, 13(2), 311–324.CrossRefPubMed

Trivers, K. F., Baldwin, L. M., Miller, J. W., Matthews, B., Andrilla, C. H., Lishner, D. M., & Goff, B. A. (2011). Reported referral for genetic counseling or BRCA 1/2 testing among United States physicians: a vignette-based study. Cancer, 117(23), 5334–5343.CrossRefPubMed

US Department of Agriculture. (2015) Dietary Guidelines for Americans. http://www.health.gov/dietaryguidelines/. Retrieved July 6, 2015.

Vermeulen, E., Henneman, L., van El, C. G., & Cornel, M. C. (2014). Public attitudes towards preventive genomics and personal interest in genetic testing to prevent disease: a survey study. European Journal of Public Health, 24(5), 768–775.CrossRefPubMed

Weinrich, S., Royal, C., Pettaway, C. A., Dunston, G., Faison-Smith, L., Priest, J. H., & Powell, I. (2002). Interest in genetic prostate cancer susceptibility testing among african American men. Cancer Nursing, 25(1), 28–34.CrossRefPubMed

Wolfe Schneider, K., Anguiano, A., Axell, L., Barth, C., Crow, K., Gilstrap, M., & Freivogel, M. (2014). Collaboration of Colorado cancer genetic counselors to integrate next generation sequencing panels into clinical practice. Journal of Genetic Counseling, 23(4), 640–646.CrossRefPubMed

Titel: Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families
verfasst von: Kristina G. Flores
Laurie E. Steffen
Christopher J. McLouth
Belinda E. Vicuña
Amanda Gammon
Wendy Kohlmann
Lucretia Vigil
Zoneddy R. Dayao
Melanie E. Royce
Anita Y. Kinney
Publikationsdatum: 06.08.2016
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 3/2017
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-016-0001-7

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Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families

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