Adolescents' Long-Term Adaptation to Familial Cancer Risks

描述（由申请人提供）：超过25%的乳腺癌幸存妇女同时是18岁以下儿童的母亲。母亲的癌症扰乱了正常的育儿程序，增加了家庭压力，并导致后代之间的压力。青春期女孩特别容易患母亲乳腺癌，随之而来的是焦虑/抑郁的增加。母亲们因患乳腺癌而产生的痛苦在这些结果中起着核心作用，并延伸到幸存者身上。目前，人们对母亲乳腺癌“前驱”对青少年的心理社会影响知之甚少，“前驱”是一个外行术语，描述由于家族史和遗传状况而患乳腺癌的高风险妇女。超过10万名女性接受了两种主要的乳腺癌风险基因BRCA1和BRCA2 （BRCA1/2）的突变检测，根据这些信息做出改变生活的决定。携带BRCA1/2突变的女性的亲生子女有50%的机会遗传这种具有风险的突变，这大大增加了她们一生患乳腺癌的风险。我们在这一领域的工作表明，尽管青少年还没有达到BRCA1/2癌症基因检测的年龄，但有70%的人被告知他们母亲的基因检测结果和家族癌症风险。青少年得知这一消息后，其癌症相关行为和认知、生活质量和身份的长期后果方面的信息缺乏。研究表明，遗传信息可能会在家庭成员之间形成独特的反应，形成对疾病风险的看法，并增加与疾病相关的担忧。当关注的焦点是儿童时，这些问题具有重要意义：了解家族癌症风险信息可能会影响发育中的青少年的自我意识，对癌症的担忧，并对自己的癌症风险升高产生误解。这个问题在行为癌症控制文献中被忽视了。鉴于这些问题，本研究的主要目的是加深我们对向青少年披露家族癌症风险信息的长期结果的理解。我们将通过开展一项与青少年癌症预防和发展相关的公共卫生问题的混合方法横断面调查来实现这一目标：癌症相关的行为和认知、生活质量和身份。这些结果将在1-5年前参加BRCA1/2基因检测的母亲的青少年中进行大规模分层样本检验，这些母亲都向其子女透露了他们的基因检测结果。将母亲乳腺癌未/受影响状态和BRCA检测结果纳入研究设计，使我们有机会发展和强有力地评估在这种情况下关于青少年心理社会发展的连贯的、基于家族癌症风险的假设。假设将在家庭生态学、家庭系统和压力应对框架指导下的多变量分析中进行检验，这些框架全面解决基因组条件的公共卫生翻译。研究结果有望有助于了解青少年长期的心理社会和行为适应，并为干预这一不断增长的人口奠定基础。

DESCRIPTION (provided by applicant): 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. PUBLIC HEALTH RELEVANCE: 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.