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01-02-2017 | Original Research

Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age

Authors: Ashley Elrick, Sato Ashida, Jennifer Ivanovich, Sarah Lyons, Barbara B. Biesecker, Melody S. Goodman, Kimberly A. Kaphingst

Published in: Journal of Genetic Counseling | Issue 1/2017

Abstract

Genetic test results have medical implications beyond the patient that extend to biological family members. We examined psychosocial and clinical factors associated with communication of genetic test results within families. Women (N = 1080) diagnosed with breast cancer at age 40 or younger completed an online survey; 920 women that reported prior cancer genetic testing were included in analysis. We examined the proportion of immediate family members to whom they communicated genetic test results, and built multivariable regression models to examine clinical and psychosocial variables associated with the proportion score. Participants were most likely to communicate test results to their mother (83 %) and least likely to their son (45 %). Participants who carried a BRCA mutation (OR = 1.34; 95 % CI = 1.06, 1.70), had higher interest in genomic information (OR = 1.55; 95 % CI = 1.26, 1.91) and lower genetic worry (OR = 0.91; 95 % CI = 0.86, 0.96) communicated genetic test results to a greater proportion of their immediate family members. Participants with a BRCA1/2 mutation shared their genetic test results with more male family members (OR = 1.72; 95 % CI = 1.02, 2.89). Our findings suggest that patients with high worry about genetic risks, low interest in genomic information, or receive a negative genetic test result will likely need additional support to encourage family communication.

Ashida, S., Goodman, M., Pandaya, C., Koehly, L., Lachance, C., Stafford, J., & Kaphingst, K. (2011). Age differences in genetic knowledge, health literacy, and causal beliefs for health conditions. Public Health Genomics, 14, 307–316.CrossRefPubMed

Ashida, S., Goodman, M., Stafford, J., Lachance, C., & Kaphingst, K. (2012). Perceived familiarity with and important of family health history among a medically underserved population. Journal of Community Genetics, 3(4), 285–295.CrossRefPubMedPubMedCentral

Biesecker, L. G., Mullikin, J. C., Facio, F. M., Turner, C., Cherukuri, P. F., Blakesley, R. W., & Green, E. D. (2009). The ClinSeq project: piloting large-scale genome sequencing for research in genomic medicine. Genome Research, 19(9), 1665–1674.CrossRefPubMedPubMedCentral

Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Olopade, O. I., Daly, M. B., Moore, C. W., et al. (2012). When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer, 118(13), 3417–3425.CrossRefPubMedPubMedCentral

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

Chaturvedi, S. K., Strohschein, F. J., Saraf, G., & Loiselle, C. G. (2014). Communication in cancer care: psycho-social, interaction, and cultural issues. A general overview and the example of India. Frontiers in Psychology, 5, 1332.CrossRefPubMedPubMedCentral

Cheung, E. L., Olson, A. D., Yu, T. M., Han, P. Z., & Beattie, M. S. (2010). Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiology, Biomarkers & Prevention, 19(9), 2211–2219.CrossRef

de Sanjosé, S., Leone, M., Berez, V., Izquierdo, A., Font, R., Brunet, J. M., & Bosch, F. X. (2003). Prevalence of BRCA1 and BRCA2 germline mutations in young breast cancer patients: a population-based study. International Journal of Cancer, 106(4), 588–593.CrossRefPubMed

Deimling, G. T., Bowman, K. F., Sterns, S., Wagner, L. J., & Kahana, B. (2005). Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psycho-Oncology, 15(4), 306–320.CrossRef

Diefenbach, M., & Leventhal, H. (1996). The common-sense model of illness representation: theoretical and practical considerations. Journal of Social Distress and the Homeless, 5(1), 11–38.CrossRef

Finlay, E., Stopfer, J. E., Burlingame, E., Evans, K. G., Nathanson, K. L., Weber, B. L., et al. (2008). Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing, 12(1), 81–91.CrossRefPubMedPubMedCentral

Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64, 317–326.CrossRefPubMed

Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., et al. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics, 15(10), 999–1011.CrossRefPubMed

Gotay, C. C., & Pagano, I. S. (2007). Assessment of survivor concerns (ASC): a newly proposed brief questionnaire. Health and Quality of Life Outcomes, 5(1), 15–11.CrossRefPubMedPubMedCentral

Guth, U., Huang, D. J., Alder, J., & Moffat, R. (2015). Family ties: young breast cancer patients and their children. Swiss Medical Weekly, 145, 1–6.

Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18–24.CrossRefPubMed

Hay, J. L., Buckley, T. R., & Ostroff, J. S. (2005). The role of cancer worry in cancer screening: a theoretical and empirical review of the literature. Psycho-Oncology, 14(7), 517–534.CrossRefPubMed

Hay, J. L., Kaphingst, K. A., Baser, R., Li, Y., Hensley-Alford, S., & McBride, C. M. (2012). Skin cancer concerns and genetic risk information-seeking in primary care. Public Health Genomics, 15(2), 57–72.CrossRefPubMed

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

Koehly, L. M., Peterson, S. K., Watts, B., Kempf, K., Vernon, S., & Gritz, E. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer. Genetic Testing and Family Functioning, 12, 304–313.

Koopman, H., Baars, R., Chaplin, J., & Zwinderman, K. (2004). Illness through the eyes of the child: the development of children’s understanding of the causes of illness. Patient Education and Counseling, 55, 363–370.CrossRefPubMed

Leventhal, H., Benyamini, Y., Brownlee, S., Diefenbach, M. A., Leventhal, E. A., Patrick-Miller, L., & Robitaille, C. (1997). Illness representations: Theoretical foundations. In K. H. Petrie & J. A. Weinman (Eds.), Perception of health and illness (pp. 19–46). Amsterdam: Harwood Academic Publishers.

Marteau, T., & Weinman, J. (2006). Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Social Science & Medicine, 62, 1360–1368.CrossRef

McBride, C. M., Hensley-Alford, S., Reid, R. J., Larson, E. B., Baxevanis, A. D., & Brody, L. C. (2009). Characteristics of users of online personalized genomic risk assessments: implications for physician-patient interactions. Genetics in Medicine, 11(8), 582–587.CrossRefPubMedPubMedCentral

McGivern, B., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. (2004). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6(6), 503–509.CrossRefPubMed

Mendes, A., Paneque, M., Sousa, L., Clarke, A., & Sequeiros (2016). How communication of genetic information with family is addressed in genetic counseling: a systematic review of research evidence. European Journal of Human Genetics, 24, 315–325.CrossRefPubMed

Parrott, R. L., Silk, K., Raup Krieger, J., Harris, T., & Condit, C. (2004). Behavioral health outcomes associated with religious faith and media exposure about human genetics. Health Communication, 16(1), 29–45.CrossRefPubMed

Rabin, C., & Pinto, B. (2006). Cancer-related beliefs and health behavior change among breast cancer survivors and their first-degree relatives. Psycho-Oncology, 15(8), 701–712.CrossRefPubMed

Shiloh, S., Wade, C. H., Roberts, J. S., Alford, S. H., & Biesecker, B. B. (2013). Associations between risk perceptions and worry about common diseases: a between- and within-subjects examination. Psychology & Health, 28(4), 434–449.CrossRef

Taber, J. M., Chang, C. Q., Lam, T. K., Gillanders, E. M., Hamilton, J. G., & Schully, S. D. (2014). Prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results: findings from the health information national trends survey. Public Health Genomics, 1–11.

Wiseman, M., Dancyger, C., & Michie, S. (2010). Communicating genetic risk information within families: a review. Familial Cancer, 9(4), 691–703.CrossRefPubMed

Young, S. R., Pilarski, R. T., Donenberg, T., Shapiro, C., Hammond, et al. (2009). The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. BMC Cancer, 9, 86.CrossRefPubMedPubMedCentral

Title: Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age
Authors: Ashley Elrick
Sato Ashida
Jennifer Ivanovich
Sarah Lyons
Barbara B. Biesecker
Melody S. Goodman
Kimberly A. Kaphingst
Publication date: 01-02-2017
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 1/2017
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-016-9995-0

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Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age

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