Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum

测量自闭症谱系成人的健康、功能和社会福祉

• 批准号: 10304167
• 负责人: Christina M Nicolaidis
• 金额: $ 61.96万
• 依托单位: PORTLAND STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-02-07 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10304167
• 关键词: Adult; Anger; Anxiety; Caregivers; Characteristics; Communities; Confusion; Education; Employment; Ethics; Family member; Frustration; General Population; Goals; Growth; Health; Health Services Research; Healthcare Systems; Independent Living; Individual; Intervention; Intervention Studies; Life; Life Cycle Stages; Life Expectancy; Literature; Measures; Modeling; National Institute of Mental Health; Outcome; Outcome Measure; Participant; Patient Outcomes Assessments; Personal Satisfaction; Policies; Population; Population Heterogeneity; Predictive Factor; Process; Property; Proxy; Psychometrics; Qualitative Methods; Quality of life; Reporting; Research; Research Personnel; Sampling; Series; Services; Social Well-Being; Social outcome; Standardization; Surveys; System; Testing; Time; Work; adult with autism spectrum disorder; autism spectrum disorder; autistic; cognitive interview; cohort; community based participatory research; community engagement; community organizations; disability; effectiveness evaluation; experience; follow-up; health care availability; health care quality; improved; improved outcome; instrument; interest; meetings; patient oriented; programs; recruit; response; service intervention; service providers; sound

Abstract Individuals on the autism spectrum experience a “services cliff” when they transition to adulthood, and have poor health and social outcomes over the life course. In response, the National Institute of Mental Health has highly prioritized services research to improve life outcomes for autistic adults. The lack of validated patient- reported outcome measures (PROMs) for use with autistic adults is a significant barrier to conducting high- quality services research with this population. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has been conducting community based participatory research (CBPR) in partnership with autistic adults, family members, and services professionals for over twelve years. We have used a collaborative process to adapt survey instruments to be accessible to autistic adults with diverse characteristics. More work is needed to create a full package of high-priority PROMs and to rigorously assess their psychometric properties. Our long-term goal is to improve life outcomes for autistic adults. The objective of this proposal is to use a CBPR approach to create and test a package of PROMs for evaluating the effectiveness of services interventions for autistic adults across multiple real-world settings. We will achieve our objective by meeting the following specific aims: 1) to collaboratively create the Autism Patient Reported Outcomes Measures (AutPROM) Toolbox; 2) to psychometrically test the AutPROM Toolbox measures at baseline and assess expected distributions; and 3) to assess the instruments’ sensitivity in detecting change and explore factors that may be associated with change in outcomes over time. We will use a modified Delphi process to identify constructs and measures to include in the AutPROM Toolbox. We will then work with our diverse Community Council to collaboratively adapt instruments, as needed. Where appropriate, we will create two versions of each measure – one for use by autistic adults and one for use by proxies. We will conduct cognitive interviews to establish content validity and comprehensibility of the adapted instruments. We will then test the full AutPROM Toolbox in a real-world cohort of 750 autistic adults, with sub-cohorts recruited from 1) healthcare systems; 2) disability services systems; and 3) community organizations. We will conduct surveys with participants at baseline and 6 and 12 months, and will use longitudinal growth curve modeling to test change over time and identify participant characteristics that are associated with changes in outcomes. We will use qualitative methods to understand how changes in scores on AutPROM Toolbox instruments correspond to participants’ narratives of how their life may have changed during the study period. The proposed project will create a critically-needed set of PROMs that can be used to evaluate services interventions for autistic adults across multiple real-world settings. The project will also identify factors that predict changes in life outcomes over time. Such information is key to understanding and improving existing services, refining and targeting new interventions, and informing policy.

摘要 自闭症谱系的个体在过渡到成年时会经历“服务悬崖”， 在生命过程中健康和社会后果不佳。作为回应，国家心理健康研究所 高度优先的服务研究，以改善自闭症成年人的生活结果。缺乏有效的病人- 报告的结果测量（PROM）用于自闭症成人是一个重大的障碍，进行高， 对这一人群进行优质服务研究。学术自闭症谱系伙伴关系研究和 教育部（AASPIRE）一直在合作开展基于社区的参与性研究（CBPR）。 与自闭症成年人，家庭成员和服务专业人员超过12年。我们使用了 合作过程，以适应调查工具，以方便自闭症成年人与不同的 特色需要做更多的工作，以制定一整套高度优先的方案执行机构，并严格评估 他们的心理测量特性我们的长期目标是改善自闭症成年人的生活结果。客观 该提案的一个重要目的是使用CBPR方法来创建和测试用于评估 在多个现实世界环境中为自闭症成年人提供服务干预的有效性。我们将实现 我们的目标是通过满足以下具体目标：1）合作创建自闭症患者报告 结果测量（AutPROM）量表; 2）在以下时间点对AutPROM量表进行心理测量测试： 基线和评估预期分布;以及3）评估工具在检测变化方面的灵敏度 并探索可能与结果随时间变化相关的因素。我们将使用修改后的德尔菲 识别要包含在AutPROM工具箱中的构造和度量的过程。然后我们将与我们的 多样的社区理事会，以根据需要协作调整工具。在适当的情况下，我们将创建 每个测量方法有两个版本--一个供自闭症成年人使用，一个供代理人使用。我们会进行 认知访谈，以建立内容的有效性和可理解性的改编工具。然后我们将 在750名自闭症成年人的真实世界队列中测试完整的AutPROM，其中子队列从1） 医疗保健系统; 2）残疾人服务系统;和3）社区组织。我们会进行调查 与基线和6个月和12个月的参与者，并将使用纵向生长曲线模型来测试 随着时间的推移而变化，并确定与结果变化相关的参与者特征。我们将 使用定性方法了解AutPROM测试仪器上的分数变化如何对应 参与者对他们的生活在研究期间可能发生的变化的叙述。拟议项目将 创建一套急需的PROM，可用于评估自闭症成人的服务干预 在多个真实世界的设置。该项目还将确定预测生活结果变化的因素 随着时间此类信息是了解和改进现有服务、改进和瞄准新服务的关键 干预，并告知政策。