Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing
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ORIGINAL RESEARCH
Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing Julie Lapointe & Claudia Côté & Karine Bouchard & Béatrice Godard & Jacques Simard & Michel Dorval
Received: 23 November 2011 / Accepted: 19 July 2012 / Published online: 15 August 2012 # National Society of Genetic Counselors, Inc. 2012
Abstract We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, J. Lapointe : M. Dorval Faculté de pharmacie, Université Laval, Québec, Canada J. Lapointe : C. Côté : K. Bouchard : M. Dorval (*) Unité de recherche en santé des populations, Hôpital du SaintSacrement, Centre de recherche FRSQ du Centre hospitalier affilié universitaire de Québec, 1050, chemin Ste-Foy, Québec, Québec G1S 4L8, Canada e-mail: [email protected] B. Godard Omics-Ethics Research Group, Université de Montréal, Montréal, Canada J. Simard Département de médecine moléculaire, Faculté de médecine, Université Laval, Québec, Canada J. Simard Laboratoire de génomique des cancers, Centre de recherche du CHUQ-CHUL, Québec, Canada M. Dorval Centre des maladies du sein Deschênes-Fabia, Centre hospitalier affilié universitaire de Québec, Québec, Canada
uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a “window of opportunity” to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment. Keywords Cancer susceptibility . Cancer diagnosis . Death of a family member . Family communication . Hereditary breast and/or ovarian cancer . Life events
Introduction One core principle of the Family System Genetic Illness model is that health-related life events occurring
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