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

基本信息

批准号：
10532190
负责人：
Christina M Nicolaidis
金额：
$ 62.01万
依托单位：
PORTLAND STATE UNIVERSITY
依托单位国家：
美国
项目类别：
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/10532190
关键词：
Adult Anger Anxiety Assessment tool Caregivers Characteristics Communities Confusion Education Employment Ethics Exclusion 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 Assessment 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 improved improved outcome instrument interest meetings patient oriented programs recruit response service intervention service providers sound

项目摘要

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.

抽象的自闭症谱系个体在过渡到成年后会经历“服务悬崖”，并且对此，国家心理健康研究所做出了回应。高度优先的服务研究，以改善自闭症成人的生活结果，缺乏经过验证的患者。用于自闭症成人的报告结果测量（PROM）是进行高水平治疗的一个重大障碍与该人群进行优质服务研究的自闭症谱系学术合作伙伴关系。教育 (AASPIRE) 一直在合作开展基于社区的参与性研究 (CBPR) 十二年来，我们一直与患有自闭症的成年人、家庭成员和服务专业人员一起使用。调整调查工具的协作过程，以供具有不同背景的自闭症成人使用需要做更多的工作来创建完整的高优先级 PROM 包并严格评估。他们的心理测量特性。我们的长期目标是改善自闭症成人的生活结果。该提案的目的是使用 CBPR 方法来创建和测试 PROM 包，以评估我们将在多个现实环境中实现对自闭症成人的服务干预的有效性。我们的目标是实现以下具体目标：1) 合作创建自闭症患者报告结果测量 (AutPROM) 工具箱；2) 计量测试 AutPROM 工具箱测量基线并评估预期分布；3) 评估工具检测变化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法。然后，我们将使用我们的 AutPROM 工具箱来确定要包含的结构和措施。我们将根据需要创建多元化的社区委员会来协作调整工具。每项措施有两个版本——一种供自闭症成年人使用，另一种供我们的代理人使用。然后我们将进行认知访谈，以确定改编工具的内容有效性和可理解性。在由 750 名成人自闭症患者组成的真实队列中测试完整的 AutPROM 工具箱，并从 1) 中招募子队列医疗保健系统；2) 残疾服务系统；以及 3) 社区组织。参与者在基线、6 个月和 12 个月时，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。使用定性方法了解 AutPROM Toolbox 仪器上分数的变化如何对应参与者讲述他们的生活在研究期间可能发生的变化。创建一套急需的 PROM，可用于评估针对自闭症成人的服务干预措施该项目还将确定预测生活结果变化的因素。随着时间的推移，此类信息对于理解和改进现有服务、完善和瞄准新服务至关重要。干预措施，并为政策提供信息。