BRCA1/2 Education for Mothers and Their Teen Daughters

Thousands of women have been tested for BRCA1/2 mutations to determine whether they harbor an inherited susceptibility to breast and ovarian cancer. Social and behavioral research conducted with this population suggests that communication of positive test results among mutation carriers to their high-risk family members can be an emotional and difficult task. Though genetic counseling protocols recognize the importance of this behavior to help control the spread of hereditary cancer within the kinship, few patient education resources are available to assist in this process. Moreover, when the focus of the communication is to minor children, parents' needs and motivations are unique. Despite the fact that children are not eligible for testing until reaching age 18, our research suggests that approximately 50% of daughters are almost immediately informed about their mothers' carrier status. It would appear that mothers engage their daughters in these conversations without the benefit of expert guidance and outcomes from this exchange are unknown. When mothers do talk with their daughters about genetic testing it is an emotionally-charged or "hot" issue and mothers are receptive to assistance. The focus of this R03 application is on the development of patient educational resource booklets for mothers who carry BRCA1/2 mutations and their teenage daughters. This work will be performed in 2 phases over a 2 year period. In Phase I/Year 1, in-depth qualitative research interviews will be conducted with n=15 high-risk mother-daughter pairs. An advisory panel of experts drawn from medical oncology, pediatrics and adolescent medicine, behavioral science/psychology, and genetic counseling as well as consumers will also be convened to solicit their input on key issues and concepts germane to patient education in this area. Together, this will constitute a needs assessment. In Phase II/Year 2, all of the information gathered through Phase I will be used to create patient educational resource booklets to assist high-risk mothers and daughters in their conversations about hereditary breast/ovarian cancer and BRCA1/2 genetic testing. These resources will be pretested and then pilot tested for readability, acceptability, understandability, relevance, and sensitivity using conventional and well-standardized patient education resource evaluation methods and tools with an additional 30 high-risk mother-daughter pairs using a one-group, pre-post design (pre, 1 week post, and 1 month afterwards). It is expected that with respect to issues surrounding hereditary cancer susceptibility, the resource will result in improved knowledge, communication, and support among mothers and their teenage daughters.