Does family communication matter? Exploring knowledge of breast cancer genetics in cancer families
Knowledge of breast cancer genetics is critical for those at increased hereditary risk who must make decisions about breast cancer screening options. This descriptive study explored theory-based relationships among cognitive and emotional variables related to knowledge of breast cancer genetics in cancer families. Participants included first-degree relatives of women with breast cancer who had received genetic counseling and testing. Study participants themselves did not have breast cancer and had not received genetic counseling or testing. Data were collected by telephone interviews and surveys. Variables analyzed included numeracy, health literacy, cancer-related distress, age, education, and the reported amount of information shared by the participants’ family members about genetic counseling. The multiple regression model explained 13.9% of variance in knowledge of breast cancer genetics (p = 0.03). Best fit of the multiple regression model included all variables except education. Reported amount of information shared was the only independently significant factor associated with knowledge (β = 0.28, p = 0.01). Participants who reported higher levels of information shared by a family member about information learned during a genetic counseling session also demonstrated increased knowledge about breast cancer genetics.
KeywordsKnowledge Breast cancer Cancer genetics Family communication Genetic counseling Precision medicine Numeracy Health literacy
This study was funded by the Elaine Dyer Research Endowment, provided through the Brigham Young University College of Nursing and by a Graduate Research Fellowship, provided through the Office of Graduate Studies at Brigham Young University.
Previous research with first-degree relatives of current participants was supported by grants from the National Cancer Institute at the National Institutes of Health (1R01CA129142 to AYK and U01 CA152958, K05 CA096940, and U01 CA183081 to JSM) and the Huntsman Cancer Foundation. The project was also supported by the Shared Resources (P30 CA042014) at Huntsman Cancer Institute (Biostatistics and Research Design, Genetic Counseling, Research Informatics, and the Utah Population Database [UPDB]); the Utah Cancer Registry, which is funded by Contract No. HHSN261201000026C from the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program with additional support from the Utah State Department of Health and the University of Utah; the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8UL1TR000105 (formerly UL1RR025764).
Compliance with ethical standards
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- Ashida S, Hadley DW, Goergen AF, Skapinsky KF, Devlin HC, Koehly LM (2011) The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer syndrome. The Gerontologist 51:833–842. https://doi.org/10.1093/geront/gnr049 CrossRefGoogle Scholar
- Butrick M, Kelly S, Peshkin BN, Luta G, Nusbaum R, Hooker GW, Graves K, Feeley L, Isaacs C, Valdimarsdottir HB, Jandorf L, DeMarco T, Wood M, McKinnon W, Garber J, McCormick SR, Schwartz MD (2015) Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genet Med 17:467–475. https://doi.org/10.1038/gim.2014.125 CrossRefGoogle Scholar
- Centers for Disease Control and Prevention (2015) Understanding literacy and numeracy. https://www.cdc.gov/healthliteracy/learn/understandingliteracy.html. Accessed May 18, 2018
- Erblich J, Brown K, Kim Y, Valdimarsdottir HB, Livingston BE, and Bovbjerg DH (2005) Development and validation of a breast cancer genetic counseling knowledge questionnaire. Patient Education and Counseling 56(2):182–191. https://doi.org/10.1016/j.pec.2004.02.007
- van Dooren S, Rijnsburger AJ, Seynaeve C, Duivenvoorden HJ, Essink-Bot ML, Tilanus-Linthorst MMA, de Koning HJ, Tibben A (2004) Psychological distress in women at increased risk for breast cancer: the role of risk perception. Eur J Cancer 40:2056–2063. https://doi.org/10.1016/j.ejca.2004.05.004 CrossRefGoogle Scholar
- Himes DO, Clayton MF, Donaldson GW, Ellington L, Buys SS, Kinney AY (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. J Genet Couns 25:258–269. https://doi.org/10.1007/s10897-015-9866-0 CrossRefGoogle Scholar
- Institute of Medicine (U.S.) Committee on Health Literacy (2004) Health literacy : a prescription to end confusion. National Academies Press, Washington, D.CGoogle Scholar
- Julian-Reynier C, Sobol H, Sevilla C, Nogues C, Bourret P, French Cancer Genetic N (2000) Uptake of hereditary breast/ovarian cancer genetic testing in a French national sample of BRCA1 families. French Cancer Genet Netw Psychooncol 9:504–510Google Scholar
- Kelly KM, Ellington L, Schoenberg N, Agarwal P, Jackson T, Dickinson S, Abraham J, Paskett ED, Leventhal H, Andrykowski M (2014) Linking genetic counseling content to short-term outcomes in individuals at elevated breast cancer risk. J Genet Couns 23:838–848. https://doi.org/10.1007/s10897-014-9705-8 CrossRefGoogle Scholar
- Leventhal H, Brissette I, Leventhal EA (2003) The common-sense model of self-regulation of health and illness. In: Cameron LD, Leventhal H (eds) The self-regulation of health and illness behaviour. Routledge, New York, pp 42–65Google Scholar
- National Human Genome Research Institute (2016) Frequently asked questions about genetic and genomic science. https://www.genome.gov/19016904/faq-about-genetic-and-genomic-science/ Accessed May 18, 2018
- Patenaude AF, Tung N, Ryan PD, Ellisen LW, Hewitt L, Schneider KA, Tercyak KP, Aldridge J, Garber JE (2013) Young adult daughters of BRCA1/2 positive mothers: what do they know about hereditary cancer and how much do they worry? Psycho-Oncology 22:2024–2031. https://doi.org/10.1002/pon.3257 CrossRefGoogle Scholar
- Riley BD, Culver JO, Skrzynia C, Senter LA, Peters JA, Costalas JW, Callif-Daley F, Grumet SC, Hunt KS, Nagy RS, McKinnon WC, Petrucelli NM, Bennett RL, Trepanier AM (2012) Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 21:151–161. https://doi.org/10.1007/s10897-011-9462-x CrossRefGoogle Scholar
- Sermijn E et al (2004) The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. J Med Genet 41:23e–223e. https://doi.org/10.1136/jmg.2003.011353
- Taber JM, Chang CQ, Lam TK, Gillanders EM, Hamilton JG, Schully SD (2015) Prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results: findings from the Health Information National Trends Survey. Public Health Genomics 18:67–77. https://doi.org/10.1159/000368745 CrossRefGoogle Scholar
- Tilburt JC, James KM, Sinicrope PS, Eton DT, Costello BA, Carey J, Lane MA, Ehlers SL, Erwin PJ, Nowakowski KE, Murad MH (2011) Factors influencing cancer risk perception in high risk populations: a systematic review. Hered Cancer Clin Pr 9:2. https://doi.org/10.1186/1897-4287-9-2 CrossRefGoogle Scholar