Partnering with Autistic Adults to Develop Tools to Improve Primary Healthcare

描述（由申请人提供）：自闭症成年人在接受高质量、全面的医疗保健方面面临重要障碍。此外，超过70%的初级保健提供者（pcp）对他们为自闭症成年人提供初级保健服务的能力感到不舒服。该项目的长期目标是改善自闭症成年人的健康和保健。本提案的目标是为自闭症成人及其pcp开发以患者为中心的护理工具。其中一个工具将允许自闭症成年人和/或他们的支持者向pcp提供个性化的信息，说明自闭症如何影响他们的医疗保健，以及促进高质量护理的可能策略。另一个工具将利用病人叙述的力量来教育pcp关于自闭症的知识。这些工具和其他资源将放在一个互动网站上，供自闭症成年人、支持者和pcp使用。他们将通过增加提供者对个体自闭症患者需求和偏好的知识和理解，帮助pcp提供以患者为中心的护理。他们还将协助提供者及其工作人员制定可用于增加护理机会和质量的住宿和战略。此外，这些工具将使自闭症成年人成为活跃的患者，从而对健康结果产生积极影响。学术自闭症谱系研究和教育伙伴关系（AASPIRE）是一个由自闭症成年人、研究人员、卫生保健工作者、残疾服务提供者和家庭成员组成的学术社区伙伴关系。AASPIRE团队成员将使用社区合作参与式研究（CPPR）方法来实现以下目标：1)定性地了解自闭症成年人、支持者和cpp认为什么可以改善自闭症成年人的初级卫生保健；2)编制自闭症谱系对医疗保健的影响及促进护理的可能策略问卷，并评估问卷的信度和内容效度；3)评估自闭症成人及其初级保健提供者使用基于网络的以患者为中心的护理工具的可行性和可接受性。以病人为中心的护理工具和网站将由一系列研究提供信息。研究1将是一项针对自闭症成人、自闭症成人支持者和pcp的定性研究。来自研究1的信息将用于1)创建自闭症影响和适应调查，2)为pcp创建一个基于患者叙述的教育工具，以及3)决定在网站的信息部分包含什么。研究2a将使用对自闭症成年人、支持者和pcp的认知访谈来评估调查内容的有效性和可理解性，以及向提供者解释患者调查结果的信件。研究2b将通过比较相隔两周的两个时间段的调查结果来评估重测信度。在研究3中，我们将对自闭症成年人、支持者和pcp进行调查，以评估这些工具在现实环境中的使用情况。这项研究将为未来的试验提供数据，通过增加以患者为中心的护理和患者激活来测试这些工具在改善自闭症成年人健康方面的有效性。

DESCRIPTION (provided by applicant): Autistic adults face important barriers to receiving high quality, comprehensive healthcare. Additionally, over 70% of primary care providers (PCPs) do not feel comfortable in their ability to provide primary care services to autistic adults. The project's long-term goal is to improve the health and healthcare of autistic adults. The goal of this proposal is to develop patient-centered care tools for autistic adults and their PCPs. One tool will allow autistic adults and/or their supporters to provide individualized information to PCPs about how being on the spectrum affects their healthcare and possible strategies to facilitate quality care. Another tool will capitalize on the power of patient narrative to educate PCPs about autism. These tools and other resources will be housed on an interactive website for autistic adults, supporters, and PCPs. They will help PCPs provide patient- centered care by increasing providers' knowledge and understanding of individual autistic patients' needs and preferences. They will also assist providers and their staff in developing accommodations and strategies that can be used to increase access and quality of care. Moreover, the tools will enable autistic adults to become activated patients, which in turn can positively influence health outcomes. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) is an academic- community partnership comprising autistic adults, researchers, healthcare workers, disability service providers, and family members. AASPIRE team members will use a Community-Partnered Participatory Research (CPPR) approach to meet the following aims: 1) to qualitatively understand what autistic adults, supporters, and PCPs feel would improve the primary healthcare of autistic adults; 2) to create a questionnaire on ways that being on the autistic spectrum affects healthcare and possible strategies for facilitating care, and to assess the questionnaire's reliability and content validity; and 3) to evaluate the feasibility and acceptability of using the new web-based patient-centered care tools with autistic adults and their primary care providers. The patient-centered care tools and website will be informed by a series of studies. Study 1 will be a qualitative study of autistic adults, supporters of autistic adults, and PCPs. Information from Study 1 will be used to 1) create the Autism Effects and Accommodations Survey, 2) create a patient-narrative-based educational tool for PCPs, and 3) decide what to include in the informational sections of the website. Study 2a will use cognitive interviewing with autistic adults, supporters, and PCPs to assess the content validity and comprehensibility of the survey and of letters to providers explaining patients' survey results. Study 2b will assess test-retest reliability by comparing survey results at two time periods separated by two weeks. In Study 3, we will conduct a survey with autistic adults, supporters, and PCPs to evaluate the use of the tools in real-world settings. This study will provide data for a future trial testing the effectiveness of these tools in improving the health of autistic adults by increasing patient-centered care and patient activation.