Upwards of 25% of women surviving with breast cancer are simultaneously mothering a child under the age of 18. Maternal cancer disturbs normal parenting routines, increases family stress, and contributes to stress among offspring. Adolescent girls are especially vulnerable to maternal breast cancer occurrence, with attendant elevations in anxiety/depression. Mothers'own distress surrounding their breast cancer plays a central role in these outcomes, extending into survivorship. Presently, little is known about the psychosocial impact on adolescents of maternal breast cancer "previvorship"--a lay term describing women at high risk for developing breast cancer owing to family history and genetic status. Over 100,000 women have been tested for mutations in the 2 major breast cancer risk-conferring genes BRCA1 and BRCA2 (BRCA1/2), making life- altering decisions based upon this information. Biological children of women carrying BRCA1/2 mutations have a 50% chance of inheriting the risk-conferring mutation themselves, dramatically increasing their lifetime risk of developing breast cancer. Our work in this area indicates that even though adolescents are not yet age- eligible for BRCA1/2 cancer genetic testing, >70% are told about their mothers'genetic test result and familial cancer risk. There is a dearth of information on the long-term outcomes of adolescents learning this news on their cancer-related behaviors and cognitions, quality of life, and identity. Research suggests genetic information may foster unique responses among family members, shape perceptions of disease risk, and heighten disease-related worries. These issues take on great significance when the focus is children: knowledge of familial cancer risk information may affect developing adolescents'sense of self, worry about cancer, and create misperceptions about their own cancer risk elevations. This issue has been overlooked in the behavioral cancer control literature. In light of these issues, the primary aim of this study is to deepen our understanding of the long-term outcomes of disclosing familial cancer risk information to adolescents. We will accomplish this goal by conducting a mixed-methods, cross-sectional investigation of public health issues pertinent to cancer prevention and development among adolescents: cancer-related behaviors and cognitions, quality of life, and identity. These outcomes will be examined in a large, stratified sample of adolescents of mothers who participated in BRCA1/2 genetic testing 1-5 years previously and all of whom disclosed their genetic test results to their children. Incorporating maternal breast cancer un/affected status with BRCA test results into the study design affords us the opportunity to develop and strongly evaluate coherent, familial cancer risk-based hypotheses about adolescent psychosocial development in this context. Hypotheses will be tested in multivariate analyses guided by a family ecology, family systems, and stress-coping frameworks which comprehensively address public health translations of genomic conditions. Findings are expected to contribute to knowledge of long-term adolescent psychosocial and behavioral adaptation, and lay the groundwork for intervention with this growing population.
We plan to conduct a mixed-methods, cross-sectional investigation of long-term psychosocial and behavioral outcomes in a stratified sample of adolescents (ages 12-21) of mothers who participated in BRCA1/2 genetic testing 1-5 years previously and disclosed genetic test results to these children. Virtually nothing is known about cancer-related behaviors, cognitions and other public health outcomes in these young people. Knowledge gained in this area is important to help promote safe and effective cancer genetic testing in a clinical and public health context.
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