Long-Term Adaptation Among Adolescent and Young Adult Children to Familial Cancer Risk

BACKGROUND: It is important to examine adolescent and young adult (AYA) children's long-term psychosocial and behavioral adaptation to disclosure of maternal BRCA-positive carrier status (BRCA1) to inform approaches for familial cancer risk communication, education, and counseling. METHODS: Mothers underwent BRCA genetic testing 1 to 5 years earlier. Group differences in AYAs' self-reported outcomes were analyzed by maternal health and carrier status, and child age and sex. RESULTS: A total of N 5 272 AYAs were enrolled: 76.1% of their mothers were breast or ovarian cancer survivors and 17.3% were BRCA+. AYAs' cancer risk behavior (tobacco and alcohol use, physical activity) and psychologic distress levels did not vary by maternal status. In bivariate analyses, AYAs of cancer-surviving mothers believed themselves to be at greater risk for, and were more knowledgeable about, cancer than AYAs of mothers without cancer. AYAs of BRCA+ mothers were more concerned about cancer, held stronger beliefs about genetic risk, and placed a higher value on learning about genetics. In adjusted models, maternal cancer history (not BRCA+) remained associated with AYAs' greater perceptions of cancer risk (P =.002), and knowledge about cancer (P =.03) and its causes (P =.002). CONCLUSIONS: Disclosing maternal BRCA1 status did not influence children's lifestyle behavior or adversely affect quality of life long term. AYAs of BRCA1 mothers were more aware of and interested in genetic risk information. Such families may benefit from support to promote open communication about genetic testing choices.

Automated summary

The long-term effects of disclosing maternal BRCA1 status on children's lifestyle behavior and quality of life were found to be minimal. However, children of BRCA1 mothers showed greater awareness and interest in genetic risk information. These families may benefit from support to promote open communication regarding genetic testing choices.