Abstract
The most common result of BRCA1/2 mutation testing when performed in a family without a previously identified mutation is an uninformative negative test result. Women in these families may have an increased risk for breast cancer because of mutations in non-BRCA breast cancer predisposition genes, including moderate- or low-risk genes, or shared environmental factors. Genetic counselors often encourage counselees to share information with family members, however it is unclear how much information counselees share and the impact that shared information may have on accuracy of risk perception in family members. We evaluated 85 sisters and daughters of women who received uninformative negative BRCA1/2 results. We measured accuracy of risk perception using a latent variable model where accuracy was represented as the correlation between perceived risk (indicators = verbal and quantitative measures) and calculated risk (indicators = Claus and BRCAPRO). Participants who reported more information was shared with them by their sister or mother about her genetic counseling session had greater accuracy of risk perception (0.707, p = 0.000) than those who reported little information was shared (0.326, p = 0.003). However, counselees shared very little information; nearly 20 % of family members reported their sister or mother shared nothing with them about her genetic counseling. Family members were generally not aware of the existence of a genetic counseling summary letter. Our findings underscore the need for effective strategies that facilitate counselees to share information about their genetic counseling sessions. Such communication may help their relatives better understand their cancer risks and enhance risk appropriate cancer prevention.Electronic supplementary materialThe online version of this article (doi:10.1007/s10897-015-9866-0) contains supplementary material, which is available to authorized users.
Highlights
Breast cancer risk assessment has implications for both patients and their family members
The purpose of this study was to determine whether the accuracy of sisters’ and daughters’ perceptions of their own risk for future breast cancer are improved when more information is shared by their family members who received genetic counseling and received uninformative negative BRCA1/2 test results
Our study is among the first to demonstrate that the accuracy of risk perceptions is better among counselees’ relatives when they share more information about their genetic counseling session with them
Summary
Breast cancer risk assessment has implications for both patients and their family members. Genetic counselors can help their patients understand what test results mean to them as well as their family members in terms of risk for future cancer and appropriate medical management. Counselors typically encourage their patients to share information and test results with family members and to encourage family members, in turn, to share information with their primary care providers (Riley et al 2012). The purpose of this study was to determine whether the accuracy of sisters’ and daughters’ perceptions of their own risk for future breast cancer are improved when more information is shared by their family members who received genetic counseling and received uninformative negative BRCA1/2 test results. Many at-risk relatives lack critical information that could help them better understand their cancer risks and be aware of appropriate preventive and screening measures (Ersig et al 2009; Vos et al 2011b)
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