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 大约 100 万自闭症患者将在未来十年内年满 18 岁，其中许多人不具备实现自闭症所需的技能 如果没有有效的支持，自闭症青少年每天都在与他们及其家人所渴望的生活质量作斗争。 生活技能，无论其智力水平如何，日常生活技能是独立、有偿的基础。 现有针对该年龄组的日常生活技能干预措施。 目前的治疗方法仅具有适度的效果或对现实世界环境的概括性较差。 特定日常生活技能的指导（例如洗澡的步骤），并且缺乏可变的内容 支持日常生活技能发展和概括的心理因素正在进一步治疗。 由于对健康的社会决定因素（例如家庭收入、社区 资源）有助于识别可变的心理因素和社会决定因素。 健康推动过渡年龄自闭症青少年日常生活技能的变化对于改善公共卫生至关重要 这些知识将确定改善日常状况的关键干预和服务提供目标。 更好的执行功能和自决能力与更先进的日常生活相关。 技能，并且这两个因素都会随着自闭症的治疗而改善。我们的核心科学前提是干预措施。 日常生活技能以及促进这些技能的服务提供系统将通过更多知识得到增强 此外，日常生活技能的提高将直接影响这些技能。 该项目将改善下游生活质量和生产力。 通过前瞻性纵向研究了解知识，评估驱动日常变化的心理因素 自闭症青少年高中毕业期间的生活技能（AIM 1），以及日常生活技能的影响 我们还将探讨个人（例如家庭收入）和生活质量的影响。 社区层面（童年机会指数）因素对日常生活技能的影响（AIM 3）。 需要大量代表性样本（即智商范围、说话/不说话、出生时分配的性别、性别、 拟议的纵向研究将包含 3 次访问（T1：基线，T2：+1 年，T3：+2 年；最终） N=170）。我们的招募策略将确保所有参与者至少有一个高中前和高中后的时间点。 我们预测：AIM 1，H1）执行功能和自我决定将解释显着差异。 上述协变量的同时日常生活技能，H2a,b) 执行功能和自我决定； 基线将预测 T3 的日常生活技能以及 AIM 2 上日常生活技能随时间的变化； H3a,b) 日常生活技能的较大提高将预测更好的客观和主观生活质量 在 AIM 3 中，我们探讨了生活质量随时间变化的社会决定因素的直接和间接影响。 该项目将产生加强日常生活技能干预和实施的关键知识。 将改善自闭症成人的长期结果并增加公平获得服务的系统。