Adolescents' Long-Term Adaptation to Familial Cancer Risks

青少年对家族癌症风险的长期适应

• 批准号: 8007405
• 负责人: Kenneth Tercyak
• 金额: $ 59.11万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-12-17 至 2014-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8007405
• 关键词: Address; Adolescence; Adolescent; Adolescent Behavior; Adult; Affect; Age; Alcohol consumption; Anxiety; Area; Attitude; BRCA1 gene; BRCA2 Mutation; BRCA2 gene; Behavior; Behavioral; Biological; Breast; Cancer Control; Characteristics; Child; Clinical; Cognition; Control Locus; Data; Data Collection; Decision Making; Development; Disclosure; Disease; Distress; Ecology; Family; Family Cancer History; Family history of; Family member; Female; Female Adolescents; Fostering; Gender; General Population; Genetic; Genetic Status; Genetic screening method; Genomics; Goals; Health; Hereditary Disease; Hereditary Malignant Neoplasm; High Risk Woman; Individual Differences; Inherited; Intervention; Interview; Investigation; Knowledge; Learning; Life; Light; Literature; Malignant Neoplasms; Maternal Health; Measures; Mental Depression; Methods; Modeling; Mothers; Multivariate Analysis; Mutation; Nature; Outcome; Parenting behavior; Parents; Perception; Personal Satisfaction; Personality; Physical activity; Play; Population; Positive Test Result; Preparation; Public Health; Quality of life; Recording of previous events; Relative (related person); Research; Research Design; Resources; Risk; Role; Sampling; Screening for cancer; Self Efficacy; Shapes; Social support; Stratification; Stress; Stress and Coping; Surveys; System; Teenagers; Test Result; Testing; Tobacco use; Translations; Woman; Work; base; behavior rating scale; cancer genetics; cancer prevention; cancer risk; coping; design; disorder risk; experience; follower of religion Jewish; indexing; interest; lifetime risk; male; malignant breast neoplasm; mutation carrier; news; offspring; peer; psychosocial; public health relevance; resilience; response; risk perception; stressor; survivorship; teenage mother

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.

描述（由申请人提供）： 超过 25% 的乳腺癌幸存者同时抚养 18 岁以下的孩子。孕产妇癌症扰乱了正常的育儿常规，增加了家庭压力，并增加了后代的压力。青春期女孩特别容易患上母亲乳腺癌，随之而来的是焦虑/抑郁的加剧。母亲自身围绕乳腺癌的痛苦在这些结果中发挥着核心作用，并延伸到生存。目前，人们对母亲乳腺癌“孕前”对青少年心理社会的影响知之甚少，“孕前”是一个通俗术语，描述由于家族史和遗传状况而处于患乳腺癌高风险的女性。超过 100,000 名女性接受了两种主要乳腺癌风险基因 BRCA1 和 BRCA2 (BRCA1/2) 的突变检测，并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% 的机会遗传到这种带来风险的突变，从而大大增加了她们一生中患乳腺癌的风险。我们在这一领域的工作表明，尽管青少年尚未达到接受 BRCA1/2 癌症基因检测的年龄，但超过 70% 的人被告知其母亲的基因检测结果和家族癌症风险。关于青少年了解这一新闻后，他们与癌症相关的行为和认知、生活质量和身份的长期结果的信息非常缺乏。研究表明，遗传信息可能会促进家庭成员之间的独特反应，形成对疾病风险的认知，并加剧与疾病相关的担忧。当焦点是儿童时，这些问题就显得意义重大：对家族癌症风险信息的了解可能会影响发育中青少年的自我意识、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、横断面调查来实现这一目标：与癌症相关的行为和认知、生活质量和身份。这些结果将在一个大的、分层的青少年样本中进行检查，这些样本的母亲在 1-5 年前参加过 BRCA1/2 基因检测，并且所有这些人都向孩子透露了他们的基因检测结果。将母体乳腺癌未/受影响状态与 BRCA 测试结果纳入研究设计中，使我们有机会在这一背景下制定并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得到检验，这些分析全面解决基因组状况的公共卫生转化问题。研究结果预计将有助于了解青少年长期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。 公共卫生相关性：我们计划对青少年（12-21 岁）分层样本的长期心理社会和行为结果进行混合方法、横断面调查，这些样本的母亲在 1-5 年前参加过 BRCA1/2 基因检测，并向这些孩子披露了基因检测结果。事实上，我们对这些年轻人与癌症相关的行为、认知和其他公共卫生结果一无所知。在该领域获得的知识对于帮助在临床和公共卫生背景下促进安全有效的癌症基因检测非常重要。