Adolescents' Long-Term Adaptation to Familial Cancer Risks

描述(申请人提供)：超过25%的患有乳腺癌的女性同时在哺育18岁以下的孩子。母亲癌症扰乱了正常的育儿程序，增加了家庭压力，并增加了子女的压力。青春期女孩特别容易发生母亲乳腺癌，伴随而来的是焦虑/抑郁情绪的上升。母亲自身围绕乳腺癌的痛苦在这些结果中扮演着核心角色，并延伸到生存。目前，人们对母亲乳腺癌对青少年的心理社会影响知之甚少。“先证者”是一个外行术语，指的是由于家族病史和遗传状况而有患乳腺癌风险的女性。超过10万名女性接受了两个主要的乳腺癌风险相关基因BRCA1和BRCA2(BRCA1/2)的突变检测，并根据这些信息做出了改变生活的决定。携带BRCA1/2突变的妇女的亲生子女本身有50%的机会遗传这种导致风险的突变，大大增加了她们一生中患乳腺癌的风险。我们在这方面的工作表明，尽管青少年还没有达到接受BRCA1/2癌症基因检测的年龄，但70%的青少年被告知了他们母亲的基因检测结果和家族癌症风险。关于青少年学习这一关于他们癌症相关行为和认知、生活质量和身份认同的消息的长期结果的信息缺乏。研究表明，遗传信息可能会在家庭成员中培养独特的反应，形成对疾病风险的看法，并加剧与疾病相关的担忧。当关注的焦点是儿童时，这些问题就会变得非常重要：对家族性癌症风险信息的了解可能会影响青少年自我意识的发展，担心癌症，并造成对他们自己癌症风险水平的误解。这个问题在行为癌症控制文献中被忽视了。鉴于这些问题，这项研究的主要目的是加深我们对向青少年披露家族性癌症风险信息的长期结果的理解。我们将通过对与青少年癌症预防和发展相关的公共卫生问题进行混合方法的横断面调查来实现这一目标：癌症相关行为和认知、生活质量和身份认同。这些结果将在母亲1-5年前参加BRCA1/2基因测试并向孩子披露基因测试结果的青少年中进行大样本分层调查。将母亲乳腺癌未受影响的状况与BRCA测试结果结合在一起，使我们有机会在这一背景下开发和强有力地评估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说。假设将在家庭生态、家庭系统和压力应对框架指导下的多变量分析中得到检验，这些框架全面解决基因组条件的公共卫生翻译。这些发现有望有助于了解青少年的长期心理社会和行为适应，并为针对这一不断增长的人口进行干预奠定基础。 公共卫生相关性：我们计划对青少年(年龄12-21岁)的分层样本进行一项混合方法的横断面调查，调查对象是1-5年前参加BRCA1/2基因测试并向这些孩子披露基因测试结果的母亲。对于这些年轻人的癌症相关行为、认知和其他公共健康后果，人们几乎一无所知。在这一领域获得的知识对于在临床和公共卫生背景下促进安全和有效的癌症基因检测非常重要。

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.