Partnering with Autistic Adults to Develop Tools to Improve Primary Healthcare

  • Nicolaidis, Christina (PI)

Project: Research project

Project Details


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.
Effective start/end date6/1/114/30/15


  • National Institutes of Health: $181,159.00
  • National Institutes of Health: $329,490.00
  • National Institutes of Health: $117,664.00


  • Medicine(all)


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