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：青少年晚期和成年早期 这项申请要求继续支持纵向研究，研究双向影响 在FXS患儿和他们母亲之间产生的影响。在拟议期间，儿童将过渡到 我们将研究我们从2岁起反复测量的变量如何影响生活 安排，就业状况和年轻人的生活质量。我们也将继续关注他们的 突变前的母亲，其中许多人正面临着与自己的衰老过程和 孩子辍学并可能离家的不确定性。我们的研究表明， FXS表型部分是由生物学、行为和环境的动态相互作用驱动的， 时间因此，成年早期是一个调查变量影响的机会， 从幼儿时期起就一直影响着孩子和母亲的因素（即，性，自闭症心理学， 母亲的反应，语言，认知），以及新的变量，包括过渡计划和家庭 环境可能会影响成年后的结果。该项目继续由南希布雷迪博士领导， 史蒂夫·沃伦与堪萨斯大学的坎迪斯·弗莱明博士和雪莱·布雷丁·奥贾博士合作。 我们建议从青春期后期到成年早期每对儿收集两个额外的数据点。中 我们研究的优势是从最初的55对二人组中保留了46对（84%的留存率）。 此外，我们计划增加12个新的 参与者我们提出两个目标。目标1：早期预测因素（即，为人父母的行为， 交流，问题行为，自闭症行为学，生物标志物）和后来的预测因子（即，质量 过渡计划，父母的期望和看法，SES）影响就业，沟通，适应 行为，生活质量，独立性，以及青少年向成年过渡的自我决定？目的 2：早期和晚期预测因子（即，孩子的行为和沟通，以及母亲的心理 健康和生物标志物）影响母亲的执行功能，单词检索，感知焦虑，抑郁 和照顾者的负担，伙伴的支持，对IEP过渡计划的满意度，以及社区的支持， 过渡到成年？这些目标将为一个基本上未经研究的时代提供经验性的见解。 我们研究的纵向性质，每个二元组多达10个数据点，将用于确定 结果以及可能的治疗目标和对这些目标进行干预的时机， 结果更糟。