Health System Integration of Tools to Improve Primary Care for Autistic Adults

摘要： 卫生系统装备不足，无法满足自闭症成年人的需求。我们之前的工作发现了重要的 自闭症成年人经历的医疗差距，包括更大的未得到满足的医疗需求，较低的使用 预防服务，以及更多地使用急诊科。大多数初级保健提供者 (PCP)缺乏照顾自闭症成年人所需的技能，但相互竞争的优先事项使他们不太可能参加 关于自闭症的培训。自闭症谱系的异质性也可能使PCP具有挑战性 了解特定患者的需求。研究和教育中的学术自闭症谱系合作 (AASPIRE)，一个由学者、自闭症成年人、医疗保健人员组成的学术-社区合作伙伴关系 提供者和支持者使用基于社区的参与性研究(CBPR)方法来开发 并测试一个旨在改善自闭症成年人初级保健服务的在线医疗工具包。确实是 专门设计为低强度、可持续的干预措施，可在繁忙的初选中实际使用 没有特别关注自闭症或其他发育障碍的护理做法。工具包 包括自闭症医疗调节工具(AHAT)--一种自动化工具，允许患者和/或 他们的支持者为他们的PCP和其他有针对性的资源创建个性化的住宿报告， 工作表、核对表和信息。我们的试点工作表明，AHAT具有很强的结构性 效度和重测稳定性，该工具包是高度可接受和可访问的，它有可能 减少护理障碍并增加患者与提供者之间的沟通。我们的长期计划是进行一项 混合有效性-实施试验，使用整群随机试验设计，两者都用于测试有效性 AASPIRE Healthcare工具包在提高医疗质量和利用率以及评估 在不同的医疗保健系统中实施战略。该提案的目标是使用CBPR 了解如何将工具包集成到这些卫生系统中，收集更强大的疗效的方法 数据，并探索潜在的行动机制。为此，我们将进行为期6个月的试点研究， 患者被分配到三个不同卫生系统的干预和对照诊所。我们会遇到我们的 通过实现以下具体目标来实现目标：1)确定如何将工具包的使用整合到 多样化的医疗系统；2)测试工具包对短期医疗结果的影响；3)使用混合的- 方法，以进一步探索工具包的作用机制；以及4)完善我们的招聘， 保留、数据收集和系统集成战略，为更大的群集做好准备-随机 审判。成功地将这一易于扩展和可持续的低强度干预措施纳入初级保健 不同卫生系统中的做法将使患者和提供者能够共同努力改善健康 对大量、未得到充分服务和研究不足且存在巨大护理障碍的人群的结果。

Abstract: The health system is ill-equipped to meet the needs of autistic adults. Our prior work has identified significant healthcare disparities experienced by autistic adults, including greater unmet healthcare needs, lower use of preventive services, and greater use of the Emergency Department (ED). A majority of primary care providers (PCPs) lack the skills needed to care for autistic adults, yet competing priorities make it unlikely they will attend trainings on autism. The heterogeneity of the autism spectrum may also make it challenging for PCPs to understand specific patients’ needs. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE), an academic-community partnership comprised of academics, autistic adults, healthcare providers, and supporters, has used a community based participatory research (CBPR) approach to develop and test an online healthcare toolkit aimed at improving primary care services for autistic adults. It was specifically designed as a low-intensity, sustainable intervention that can realistically be used in busy primary care practices that do not have a special focus on autism or other developmental disabilities. The toolkit includes the Autism Healthcare Accommodations Tool (AHAT)--an automated tool which allows patients and/or their supporters to create a personalized accommodations report for their PCP--and other targeted resources, worksheets, checklists, and information. Our pilot work has demonstrated that the AHAT has strong construct validity and test-retest stability, the toolkit is highly acceptable and accessible, and it has the potential to decrease barriers to care and increase patient-provider communication. Our long-term plan is to conduct a hybrid effectiveness-implementation trial, using a cluster randomized trial design, both to test the effectiveness of the AASPIRE Healthcare Toolkit in improving healthcare quality and utilization and to assess the utility of implementation strategies in diverse healthcare systems. The objective of this proposal is to use a CBPR approach to understand how to integrate the toolkit into these health systems, collect more robust efficacy data, and explore potential mechanisms of action. We will do so by conducting a 6-month pilot study with patients assigned to intervention and control clinics in three diverse health systems. We will meet our objectives by achieving the following specific aims: 1) to determine how to integrate use of the toolkit within diverse health systems; 2) to test the effect of the toolkit on short-term healthcare outcomes; 3) to use a mixed- methods approach to further explore the toolkit’s mechanisms of action; and 4) to refine our recruitment, retention, data collection, and system integration strategies in preparation for the larger cluster-randomized trial. Successful integration of this easily scalable and sustainable low-intensity intervention into primary care practices within diverse health systems will empower patients and providers to work together to improve health outcomes for a large, underserved, and understudied population with great barriers to care.