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

摘要： 卫生系统设备不足，无法满足成年自闭症患者的需求。我们之前的工作已经发现了 自闭症成年人经历的医疗保健差异，包括更大的未满足的医疗保健需求， 预防服务，以及更多地利用急诊室（艾德）。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， 了解患者的具体需求。学术自闭症谱系研究和教育伙伴关系 （AASPIRE），一个学术社区伙伴关系，由学者，自闭症成人，医疗保健 提供者和支持者，使用基于社区的参与式研究（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。这是 专门设计为低强度，可持续的干预，可以实际用于忙碌小学 没有特别关注自闭症或其他发育障碍的护理做法。该工具包 包括自闭症医疗诊断工具（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创建个性化的住宿报告-以及其他有针对性的资源， 清单、检查表和信息。我们的试点工作表明，AHAT具有强大的结构， 有效性和重测稳定性，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，增加患者与提供者的沟通。我们的长期计划是进行一项 混合有效性-实施试验，采用整群随机试验设计，既检验有效性， AASPIRE医疗保健工具包在提高医疗保健质量和利用率方面的作用， 在不同的医疗保健系统中实施战略。本提案的目的是使用CBPR 了解如何将工具包整合到这些卫生系统中的方法， 数据，并探索潜在的作用机制。为此，我们会进行为期六个月的试验研究， 病人被分配到三个不同的卫生系统的干预和控制诊所。我们将满足我们的 （1）确定如何将工具包的使用纳入 多样化的卫生系统; 2）测试工具包对短期卫生保健结果的影响; 3）使用混合- 方法，以进一步探索工具包的作用机制;以及4）改进我们的招聘工作， 保留，数据收集和系统集成策略，为更大的集群随机化做准备 审判成功地将这种易于扩展和可持续的低强度干预纳入初级保健 不同卫生系统内的实践将使患者和提供者能够共同努力改善健康状况 结果为一个庞大的，服务不足，研究不足的人口与巨大的障碍，以照顾。

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.