Partnering with Autistic Adults to Develop Tools to Improve Primary Healthcare

与自闭症成人合作开发改善初级医疗保健的工具

• 批准号: 8268356
• 负责人: Christina M Nicolaidis
• 金额: $ 18.12万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-06-01 至 2013-04-07
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8268356
• 关键词: Acute; Adult; Affect; Area; Autistic Disorder; Caring; Chronic Disease; Cognitive; Collaborations; Communication; Communities; Competence; Comprehensive Health Care; Data; Development; Diagnostic; Education; Effectiveness; Ethnic Origin; Face; Family member; Future; Goals; Health; Health Personnel; Healthcare; Healthcare Systems; Heterogeneity; Housing; Impairment; Individual; Institute of Medicine (U.S.); Interdisciplinary Study; Interview; Knowledge; Lead; Letters; Link; Methods; Monitor; Online Systems; Outcome; Patient Care; Patient-Centered Care; Patients; Personal Communication; Phase; Population; Population Heterogeneity; Preventive; Primary Health Care; Protocols documentation; Provider; Quality of Care; Questionnaires; Race; Randomized Controlled Trials; Research; Research Infrastructure; Research Personnel; Resources; Science; Secure; Sensory; Series; Services; Social Interaction; Solid; Surveys; System; Testing; Time; Training; Work; Writing; autism spectrum disorder; base; design; disability; dissemination research; evidence base; experience; health care quality; improved; information processing; innovation; instrument; interest; meetings; member; oral communication; patient oriented; preference; skills; success; tool; web site

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.

描述（由申请人提供）：自闭症成年人面临着接受高质量，全面的医疗保健的重要障碍。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整个自闭症谱系中成年人的健康和医疗保健。该提案的目标是为自闭症成年人及其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提供个性化信息，了解频谱如何影响他们的医疗保健以及促进优质护理的可能策略。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被安置在一个互动网站上，供自闭症成年人、支持者和PCP使用。他们将帮助PCP提供以病人为中心的护理，增加供应商的知识和理解个别自闭症患者的需求和偏好。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，这反过来又会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）是一个学术社区伙伴关系，包括自闭症成年人，研究人员，医疗保健工作者，残疾服务提供者和家庭成员。AASPIRE团队成员将使用社区合作的前瞻性研究（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的感受将改善自闭症成年人的初级医疗保健; 2）创建一份关于自闭症谱系如何影响医疗保健和促进护理的可能策略的问卷，并评估问卷的信度和内容效度; 3）评估新的基于网络的以病人为中心的护理工具与自闭症成年人及其初级保健提供者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将是一个定性研究的自闭症成年人，自闭症成年人的支持者，和PCP。来自研究1的信息将用于1）创建自闭症影响和预防调查，2）为PCP创建基于患者叙述的教育工具，3）决定在网站的信息部分中包含哪些内容。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。研究对象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，以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。