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

摘要 自闭症谱系上的人在过渡到成年期时会经历“服务悬崖”，并有 一生中健康和社会后果不佳。作为回应，国家心理健康研究所已经 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- 用于自闭症成人的已报道的结果测量(PROM)是进行高自闭症治疗的重要障碍 为这些人群提供高质量的服务研究。学术自闭症谱系研究和伙伴关系 教育(AASPIRE)一直在合作开展基于社区的参与性研究(CBPR) 与患有自闭症的成年人、家庭成员和服务专业人员合作超过12年。我们使用了一个 协作过程，调整调查工具，使具有不同特征的自闭症成年人可以使用 特点。需要更多的工作来创建一整套高优先级的PROM，并严格评估 他们的心理测量学特性。我们的长期目标是改善自闭症成年人的生活结果。目标是 这项建议的目的是使用CBPR方法创建和测试PROMS包，以评估 在多种现实环境中为自闭症成人提供的服务干预的有效性。我们将实现 我们的目标是通过满足以下具体目标：1)协作创建报告的自闭症患者 结果测量(AutPROM)工具箱；2)在以下位置对AutPROM工具箱测量进行心理测试 基线和评估预期分布；以及3)评估仪器在检测变化方面的灵敏度 并探索可能与随着时间的推移结果变化有关的因素。我们将使用修改后的Delphi 确定要包括在AutPROM工具箱中的构件和测量的过程。然后我们将与我们的 不同的社区理事会，根据需要协作调整工具。在适当的情况下，我们将创建 每项措施都有两个版本--一个供自闭症成年人使用，另一个供代理人使用。我们将进行 认知访谈以确定改编工具的内容效度和可理解性。到时候我们会的 在750名自闭症成年人的真实队列中测试完整的AutPROM工具箱，子队列从1) 卫生保健系统；2)残疾服务系统；以及3)社区组织。我们将进行调查 参与者在基线、6个月和12个月，并将使用纵向增长曲线建模来测试 随时间变化，并确定与结果变化相关的参与者特征。我们会 使用定性方法了解AutPROM工具箱工具上分数的变化如何对应 向参与者讲述他们的生活在研究期间可能发生了怎样的变化。拟议的项目将 创建一套急需的可用于评估针对自闭症成人的服务干预措施的PROM 跨越多个真实世界环境。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。这些信息是了解和改进现有服务、提炼和瞄准新服务的关键 干预，并为政策提供信息。

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.