Background: Research suggests a need for patient-centered outcomes research (PCOR) to address healthcare transition (HCT) services for autistic youth in their transition to adulthood, as service provision is often low and inaccessible. Families report difficulty finding support and services to transition the healthcare needs of their autistic youth and adults. Further, autistics and families have many ideas on the research needed to improve HCT, but there is no forum to share their ideas for needed research.
Proposed Solution to the Problem: This project proposes a series of convenings for autistics, families/caregivers, healthcare providers, and researchers on the research gaps related to pediatric-to-adult HCT. The project team will design accessible means of discussing gaps in research using the insights of autistic self-advocates and family consultants.
Objectives: The primary objective is to gather perspectives on research gaps related to HCT. The project team aims to:
- Build trust by engaging autistic stakeholders in HCT PCOR/comparative clinical effectiveness research (CER) discussions and prepare other research stakeholders for autistic-centered collaboration practices
- Identify gaps in healthcare research on pediatric-to-adult HCT for autistic youth and young adults
- Identify and prioritize outcomes of interest to the autism community for future HCT PCOR/CER
- Identify the perspective of stakeholders on collaborative strategies for PCOR/CER
Activities: The project’s multistakeholder team will collaboratively design a series of convenings on research gaps related to pediatric-to-adult HCT. During these convenings, small groups of stakeholders and larger multi-stakeholder groups will discuss healthcare transition literature, identify gaps in research, and identify outcomes to prioritize in HCT PCOR/CER for autistic youths.
Projected Outcomes and Outputs:
In the short term the project team expects to better understand how autistic youth and adults can be engaged with other stakeholders in high priority research discussions and have a road map to address gaps in HCT PCOR/CER for this underserved population. The project team expects to deliver two primary outputs: a lay conference summary and an article on HCT PCOR/CER gaps and priority outcomes.
Mid-term outcomes (0-2 years post-project period) will leverage new partnerships locally and beyond Vermont to develop a HCT PCOR/CER project seeking to answer a priority question of the community.
In the long term (3+ years post-project period), the project team will have increased capacity to focus on a larger HCT project and other priorities of the autism community.
Patient and Stakeholder Engagement Plan: Autistic adults and family members provided the idea development for this convening project. Vermont families and autistics will be key partners in the focus groups and in the analysis of the qualitative data gathered. They will be partners in determining the format for convening and sharing perspectives on HCT and research gaps among stakeholder groups.
Project Collaborators: The project team is working with Vermont Family Network (VFN) resource consultants and with Green Mountain Self-Advocates (GMSA).