FXS: Late Adolescence and Early Adulthood

FXS：青春期晚期和成年早期

• 批准号: 10367077
• 负责人: NANCY CAROLINE BRADY
• 金额: $ 48.6万
• 依托单位: UNIVERSITY OF KANSAS LAWRENCE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-04-01 至 2027-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10367077
• 关键词: Adaptive Behaviors; Address; Adolescence; Adolescent; Adult; Advocacy; Age; Aging; Anxiety; Area; Behavior; Biological; Biological Markers; Biology; Body mass index; CGG repeat; Caregiver Burden; Child; Child Behavior; Child Rearing; Cognition; Cognitive; Collaborations; Communication; Communities; Data; Data Collection; Data Set; Development; Education; Employment; Employment Status; Environment; FMR1; FMR1 Premutation; FMRP; Family; Friendships; Goals; Growth; Home; Human; Impaired cognition; Individual; Intervention; Kansas; Language; Life; Literature; Living Arrangement; Longevity; Measures; Menopause; Mental Depression; Mental Health; Modeling; Mosaicism; Mothers; Mutation; National Institute of Child Health and Human Development; Natural History; Nature; Outcome; Participant; Perception; Personal Satisfaction; Persons; Phenotype; Problem behavior; Process; Quality of life; Request for Applications; Research; Retrieval; Risk Factors; Sampling; Schools; Secondary Schools; Self Determination; Strategic Planning; Symptoms; Time; Uncertainty; United States National Institutes of Health; Universities; Vocation; autism spectrum disorder; early childhood; emerging adult; executive function; expectation; experience; improved; insight; longitudinal design; middle childhood; multilevel analysis; outcome prediction; recruit; research study; resilience; retention rate; satisfaction; self-reported anxiety; sex; skills; social; social engagement; young adult

FXS: Late Adolescence and Early Adulthood This application requests continued support for longitudinal research studying the bidirectional influences exerted between children with FXS and their mothers. During the proposed period, the children will transition to young adulthood, and we will examine how variables we have repeatedly measured since age 2 impact living arrangements, employment status, and quality of life as young adults. We will also continue to follow their premutation mothers, many of whom are facing transitions associated with their own aging process and the uncertainties of having a child exit schooling and potentially leave home. Our research has demonstrated that the FXS phenotype is driven in part by the dynamic interaction of biology, behavior, and the environment over time. Consequently, the early adulthood period represents an opportunity to investigate the impact of variables that have been influencing both the child and mother since early childhood (i.e., sex, autism symptomology, maternal responsivity, language, cognition), and new variables including transition planning and the family environment that may impact outcomes in adulthood. This project continues to be led by Drs. Nancy Brady and Steve Warren in collaboration with Drs. Kandace Fleming and Shelley Bredin-Oja at the University of Kansas. We propose to collect two additional data points per dyad from late adolescence to early adulthood. Among the strengths of our study is the retention from early childhood of 46 of the original 55 dyads (84% retention rate). Further, we plan to strengthen the generalizability of findings from the transition period by adding 12 new participants. We propose two aims. Aim 1: To what extent do early predictors (i.e., parenting behaviors, communication, problem behavior, autism symptomology, biomarkers) and later predictors (i.e., quality of transition plan, parental expectations and perceptions, SES) influence employment, communication, adaptive behavior, quality of life, independence, and self-determination of adolescents transitioning to adulthood? Aim 2: To what extent do early and later predictors (i.e., child behaviors and communication, and maternal mental health and biomarkers) influence mothers' executive functioning, word retrieval, perceived anxiety, depression and caregiver burden, partner support, satisfaction with IEP transition plans, and community support during transition to adulthood? Together these aims will provide empirical insights into a largely unstudied age period. The longitudinal nature of our study, with up to 10 data points per dyad, will be used to identify predictors of outcomes as well as possible treatment targets and timing for interventions on these targets for those who have poorer outcomes.

FXS：青春期和成年初期 该应用要求继续支持研究双向影响的纵向研究 有FXS和母亲的孩子之间的工作。在拟议期间，孩子们将过渡到 年轻的成年，我们将研究自2岁以来的变量如何反复测量 年轻人的安排，就业状况和生活质量。我们还将继续遵循他们的 预先享有的母亲，其中许多人面临着与自己的衰老过程相关的过渡和 不确定的儿童退出学校并有可能离开家。我们的研究表明 FXS表型部分由生物学，行为和环境的动态相互作用驱动 时间。因此，成年时期代表了调查变量影响的机会 从小就一直影响孩子和母亲的人（即性，自闭症症状， 孕产妇的反应性，语言，认知）和新变量，包括过渡计划和家人 可能影响成年后结果的环境。该项目继续由Drs领导。南希·布雷迪（Nancy Brady）和 史蒂夫·沃伦（Steve Warren）与博士合作。堪萨斯大学的Kandace Fleming和Shelley Bredin-Oja。 我们建议从青春期晚期到成年早期收集每个二元组的两个额外数据点。在 我们研究的优势是从童年开始的46个原始55个二元组（保留率为84％）的保留率。 此外，我们计划通过添加12个新的新发现来增强发现的普遍性 参与者。我们提出了两个目标。目标1：早期预测因素在多大程度上（即育儿行为， 沟通，问题行为，自闭症症状，生物标志物）和后来的预测因子（即 过渡计划，父母的期望和看法，SES）影响就业，沟通，适应性 过渡到成年的青少年的行为，生活质量，独立性和自决？目的 2：早期和较晚的预测因素（即儿童行为和沟通以及孕产妇的心理）在多大程度上 健康和生物标志物）影响母亲的执行功能，单词检索，感知到焦虑，抑郁症 和照顾者负担，合作伙伴支持，对IEP过渡计划的满意度以及社区支持 过渡到成年？这些目标共同为在很大程度上未研究的年龄时期提供经验见解。 我们研究的纵向性质，每个双子的最多10个数据点，将用于识别 结果以及可能的治疗目标以及对这些目标进行干预的时间和时间安排 结果差。