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: 8191972
• 负责人: Christina M Nicolaidis
• 金额: $ 32.95万
• 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 2013-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8191972
• 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. 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.

描述（由申请人提供）：自闭症成年人面临着获得高质量，全面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成年人的健康和医疗保健。该建议的目的是为自闭症成年人及其PCP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/或其支持者向PCP提供个性化信息，以了解频谱中的状况如何影响其医疗保健以及促进优质护理的可能策略。另一个工具将利用患者叙事的力量来教育PCP关于自闭症的力量。这些工具和其他资源将安置在自闭症成年人，支持者和PCP的交互式网站上。他们将通过提高提供者对自闭症患者的需求和偏好的了解和理解来帮助PCP提供以患者为中心的护理。他们还将协助提供者及其员工制定可用于提高服务和质量护理的住宿和策略。此外，这些工具将使自闭症成年人成为激活的患者，进而可以积极影响健康结果。研究和教育学术自闭症谱系伙伴关系（AASPIRE）是一种学术社区伙伴关系，包括自闭症成人，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参与研究（CPPR）方法来满足以下目的：1）定性地了解自闭症成年人，支持者和PCP的感觉将改善自闭症成年人的主要医疗保健； 2）在自闭症频谱上的方式中创建问卷调查，会影响医疗保健和促进护理的可能策略，并评估问卷的可靠性和内容有效性； 3）评估使用自闭症成年人及其初级护理提供者使用新的基于Web的患者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告知。研究1将是对自闭症成年人，自闭症成人支持者和PCP的定性研究。研究1的信息将用于1）创建自闭症效果和住宿调查，2）创建用于PCP的基于患者的教育工具，3）决定在网站的信息段中包含什么。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给提供者解释患者调查结果的信件。研究2b将通过比较两个时间段的调查结果来评估重测的可靠性。在研究3中，我们将收集自闭症成年人，支持者和PCP的信息，以评估在现实世界中使用工具的使用。研究针对整个自闭症谱系的成年人。这项研究将为以后的试验提供数据，以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的健康方面的有效性。 公共卫生相关性：自闭症成年人面临着接受全面医疗保健的重大障碍，包括预防性护理和急性疾病的护理。拟议的项目将产生工具，以提高健康提供者为自闭症成年人提供以患者为中心的护理并提高自闭症成年人成为激活患者的能力的能力。以患者为中心的护理和患者激活都与更好的医疗保健质量和积极的健康结果有关。