Partnering with Autistic Adults to Develop Tools to Improve Primary Healthcare

描述(由申请人提供)：自闭症成人在接受高质量、全面的医疗保健方面面临着重要的障碍。此外，超过70%的初级保健提供者(PCP)对他们向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整个自闭症范围内成年人的健康和医疗保健。这项提案的目标是为自闭症成年人及其初级保健医生开发以患者为中心的护理工具。一种工具将允许自闭症成年人和/或他们的支持者向PCP提供个性化信息，说明频谱如何影响他们的医疗保健，以及促进高质量护理的可能战略。另一种工具将利用患者叙述的力量来教育PCP有关自闭症的知识。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自闭症患者个人需求和偏好的了解和了解，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获得机会和护理质量的住宿和战略。此外，这些工具将使自闭症成年人成为活跃的患者，这反过来又可以积极影响健康结果。学术自闭症光谱研究和教育伙伴关系(AASPIRE)是一个学术-社区伙伴关系，由自闭症成年人、研究人员、医护人员、残疾服务提供者和家庭成员组成。AASPIRE团队成员将使用社区合作的参与性研究(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PCP认为什么将改善自闭症成年人的基本医疗保健；2)创建一份关于自闭症谱系对医疗保健和促进护理的可能策略的影响的问卷，并评估问卷的可靠性和内容有效性；以及3)评估与自闭症成年人及其初级保健提供者一起使用新的以患者为中心的网络护理工具的可行性和可接受性。以患者为中心的护理工具和网站将通过一系列研究提供信息。研究1将对自闭症成年人、自闭症成年人的支持者和初级保健医生进行定性研究。研究1的信息将被用来1)创建自闭症影响和适应调查，2)为PCP创建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括什么。研究2a将使用认知访谈来评估调查的内容、有效性和可理解性，以及向提供者发出的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，我们将从自闭症成年人、支持者和PCP那里收集信息，以评估这些工具在现实世界中的使用情况。研究的目标是整个自闭症谱系的成年人。这项研究将为未来的试验提供数据，测试这些工具通过增加以患者为中心的护理和患者激活来改善自闭症成年人健康的有效性。 与公共卫生相关：自闭症成人在接受包括预防护理和急慢性疾病护理在内的全面医疗保健方面面临重大障碍。拟议的项目将产生工具，以提高卫生保健提供者向自闭症成年人提供以患者为中心的护理的能力，并提高自闭症成年人成为活跃患者的能力。以患者为中心的护理和患者能动性都与更好的医疗质量和积极的健康结果相关。

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 adults across the entire autistic spectrum. 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 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 collect information from autistic adults, supporters, and PCPs to evaluate the use of the tools in real-world settings. Studies are targeted to adults across the entire autistic spectrum. 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. PUBLIC HEALTH RELEVANCE: Autistic adults face significant barriers to receiving comprehensive healthcare, including preventive care and care for acute and chronic illness. The proposed project will result in tools to increase health providers' ability to provide patient-centered care to autistic adults and to increase autistic adults' ability to become activated patients. Both patient-centeredness in care and patient activation are associated with better health care quality and positive health outcomes.