A longitudinal study identifying psychological and service delivery targets to improve daily living skills and quality of life outcomes among transition-age autistic youth

一项纵向研究，确定心理和服务提供目标，以提高过渡年龄自闭症青少年的日常生活技能和生活质量

• 批准号: 10719680
• 负责人: LAUREN KENWORTHY
• 金额: $ 83.91万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-06-01 至 2028-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10719680
• 关键词: Accounting; Address; Adolescence; Adult; Advocate; Age; Automobile Driving; Caregivers; Childhood; Cognitive; Communities; Data; Development; Documentation; Employment; Employment Opportunities; Enrollment; Ensure; Environmental Risk Factor; Equity; Ethnic Origin; Family; Gender; Happiness; Health Promotion; Health Services Accessibility; Health education; Healthcare; Home; Income; Independent Living; Individual; Instruction; Insurance; Intervention; Knowledge; Legal; Link; Longitudinal Studies; Neighborhoods; Outcome; Participant; Persons; Play; Policies; Privatization; Productivity; Psychological Factors; Public Health; Quality of life; Race; Research; Research Priority; Resources; Role; Sampling; Sampling Biases; Schools; Secondary Schools; Self Care; Self Determination; Service provision; Services; Site; Social Justice; Societal Factors; Societies; System; Talents; Teenagers; Testing; Time; Visit; Work; Youth; access disparities; adolescent with autism spectrum disorder; adult with autism spectrum disorder; age group; autism spectrum disorder; autistic; caregiver education; community living; emerging adult; ethnoracial; evaporation; executive function; experience; gender diversity; high school; improved; independent self care; indexing; intervention delivery; longitudinal, prospective study; non-verbal; prevent; psychologic; recruit; service delivery; service engagement; sex; sex assigned at birth; skills; social engagement; social health determinants; targeted delivery

PROJECT ABSTRACT Approximately 1 million autistics will turn 18 in the next decade, many without the skills they need to achieve the quality-of-life that they and their families’ desire. Without effective supports, autistic youth struggle with daily living skills, regardless of their intellectual abilities. Daily living skills are fundamental to independence, paid employment, and better quality-of-life for autistic adults. Existing daily living skill interventions for this age group have only modest effects or show poor generalization to real world settings. Current treatments rely on explicit instruction of specific daily living skills (e.g., the steps for taking a shower), and they lack inclusion of mutable psychological factors that support the development and generalization of daily living skills. Treatments are further limited by inadequate knowledge of how social determinants of health (e.g., family income, community resources) contribute to daily living skills. Identification of mutable psychological factors and social determinants of health driving change in daily living skills for transition-age autistic youth is a vital to improving public health and social justice. This knowledge will identify pivotal intervention and service delivery targets for improving daily living skills. Better executive function and self-determination skills are associated with more advanced daily living skills, and both factors improve with treatment in autism. Our central scientific premise is that interventions for daily living skills, and the service delivery systems that promote them, will be enhanced with greater knowledge of psychological and systemic factors that directly impact these skills. Further, enhanced daily living skills will result in downstream improvements in quality-of-life and productivity. This project will address gaps in our knowledge with a prospective longitudinal study that evaluates psychological factors that drive change in daily living skills during the time when autistic youth exit high school (AIM 1), as well as the impact of daily living skills on quality-of-life (AIM 2). We will also explore the influence of both individual- (e.g., family income) and neighborhood-level (childhood opportunity index) factors on daily living skills (AIM 3). Finally, there is a general need for large representative samples (i.e., IQ range, speaking/nonspeaking, sex-assigned-at-birth, gender, race, ethnicity). The proposed longitudinal study will contain 3 visits (T1: baseline, T2: +1 yr., T3: +2 yrs.; final N=170). Our recruitment strategy will ensure all participants have at least one timepoint pre- and post-high school exit. We predict: AIM 1, H1) executive function and self-determination will explain significant variance in concurrent daily living skills above covariates; AIM 1, H2a,b) executive functioning and self-determination at baseline will predict daily living skills at T3 and change in daily living skills over time above covariates; AIM 2, H3a,b) larger increases in daily living skills will predict better objective and subjective quality-of-life and better change in quality-of-life over time. In AIM 3, we explore both direct and indirect effects of social determinants of health. This project will generate critical knowledge for enhancing daily living skills interventions and delivery systems that will improve long-term outcomes for autistic adults and increase equitable access to services.

项目摘要 在接下来的十年里，大约有100万自闭症患者将年满18岁，其中许多人没有实现目标所需的技能。 他们和他们的家人想要的生活质量。没有有效的支持，自闭症青少年每天都在与 生活技能，不管他们的智力水平如何。日常生活技能是独立的基础， 就业，以及自闭症成年人更好的生活质量。针对该年龄组的现有日常生活技能干预措施 对真实的世界环境只有适度的影响或表现出较差的概括性。目前的治疗依赖于明确的 具体的日常生活技能的指导（例如，洗澡的步骤），并且它们缺少可变的 支持日常生活技能发展和推广的心理因素。治疗更进一步 由于对健康的社会决定因素（例如，家庭收入，社区 资源）有助于日常生活技能。确定易变的心理因素和社会决定因素 转变年龄自闭症青少年日常生活技能的健康驱动变化对改善公共卫生至关重要 和社会正义。这些知识将确定关键的干预和服务提供目标，以改善日常工作。 生活技能。更好的执行功能和自我决定技能与更先进的日常生活有关 技能，这两个因素都随着自闭症的治疗而改善。我们的核心科学前提是， 日常生活技能和促进这些技能的服务提供系统将通过更多的知识得到提高 直接影响这些技能的心理和系统因素。此外，提高日常生活技能将 导致下游生活质量和生产力的改善。该项目将解决我们的差距 通过前瞻性纵向研究评估推动日常变化的心理因素， 自闭症青少年高中毕业时的生活技能（AIM 1），以及日常生活技能的影响 生活质量（AIM 2）。我们还将探讨个人的影响-（例如，家庭收入）和 邻里水平（童年机会指数）因素对日常生活技能（AIM 3）。最后，有一位将军 需要大的代表性样本（即，智商范围，说话/不说话，出生时性别分配，性别， 种族、民族）。拟定的纵向研究将包含3次访视（T1：基线，T2：+1年，T3：+2岁;最终 N=170）。我们的招聘策略将确保所有参与者至少有一个时间点，高中前和高中后 退出.我们预测：AIM 1，H1）执行功能和自我决定将解释显著的差异， 同时日常生活技能高于协变量; AIM 1，H2 a，B）执行功能和自决， 基线将预测T3时的日常生活技能和日常生活技能随时间的变化高于协变量; AIM 2， H3 a，B）日常生活技能的较大提高将预示着更好的客观和主观生活质量， 随着时间的推移生活质量的变化。在AIM 3中，我们探讨了社会决定因素的直接和间接影响， 健康该项目将产生重要的知识，以提高日常生活技能的干预和交付 这些系统将改善自闭症成年人的长期结果，并增加公平获得服务的机会。