Background: Autism spectrum disorder (ASD) is the fastest-growing neurodevelopmental disorder, affecting 1 in 59 children and over 5 million Americans. Transition to adulthood is difficult for most, but especially for young adults with ASD who have complex medical and psychosocial needs. A knowledge gap exists on the complex transition needs of young adults with ASD and how/when to intervene. Prior PCORI-funded work identified seven key transition areas of young adults with ASD: health care, self-advocacy, independent living skills, safety, career/job, social/relationships, and education.
Proposed Solution to the Problem: The project team will expand prior patient and stakeholder partnerships to address these areas of transitioning and their impact on health. The project will take place in Atlanta, Georgia and include patients and stakeholders from across the state and region. Together, the team will build capacity in a series of seven co-learning workshops to generate meaningful PCOR/CER research questions and improve care-related decisions. The project will incorporate the PCORnet Autism Research Interest Group to generate collaborative research proposals.
Objectives: The project aim is for patients and stakeholders to identify transitioning needs and ways to address these needs with PCOR/CER.
- Identify key stakeholders with insight on transitioning in ASD
- Expand current autism advisory board partnerships between key stakeholders
- Expand partnerships to a state and regional level
- Conduct seven co-learning stakeholder workshops and two conferences to address key transition areas
- Identify PCOR/CER research questions to address transitioning needs
- Disseminate project findings to patients and stakeholders
Activities: An autism advisory board of patients with ASD, caregivers, clinicians, payers, policy experts, and experts in ASD transitioning will meet monthly to guide the project.
Patients, stakeholders, clinicians, and researchers will create a co-learning environment in a series of seven workshops to address the key areas of transitioning and their impact on health and healthcare decision making. Two conferences will be held to confirm/refine the PCOR/CER outcomes. Findings will be disseminated to the community by the project lead, patient partners, and community partners.
Outcomes and Outputs (projected): Outcomes are expected to improve transition in young adults with ASD by:
- Establishment of stakeholder partnerships
- Enhanced communication between stakeholders
- Expansion of partnerships to a state and regional level
- Identification of PCOR/CER research questions to address key transition needs
- Creation of co-learning through patient, clinician, researcher, and stakeholder engagement
- Dissemination of outcomes to stakeholders in community meetings and toolkits
Co-learning on transitioning among patients and stakeholders will improve transitioning via better care-related decisions and PCOR/CER.
Patient and Stakeholder Engagement Plan: Patients and stakeholders who will be engaged in co-learning workshops over two years and impacted by the project include young adults with ASD (ages 14-32), caregivers, and patients/professionals from the seven key areas: health care, self-advocacy, independent living skills, safety, career/job, social/relationships, and education.
Emory University School of Nursing will lead the project in collaboration with the Emory Autism Center.