Posted April 9, 2024

Beth Malow, M.D., M.S., Vanderbilt University Medical Center
Micah Mazurek, Ph.D., University of Virginia

With support from a fiscal year 2018 Idea Development Award from the Autism Research Program, Beth Malow, M.D. from Vanderbilt University Medical Center and Micah Mazurek, Ph.D. from University of Virginia, developed and tested the Project ECHO™ Autism Transition and Adult Health Care Training curriculum and protocol for primary care providers caring for autistic transition-age youth and adults.

The Project Extension for Community Healthcare Outcomes, or Project ECHO, is a multi-point videoconferencing technology enabling a secure connection between primary care providers with an interdisciplinary team of experts.

Across the six-month program led by the research team from Malow and Mazurek, primary care providers, or PCPs, engaged in regular sessions that consisted of case- based learning, brief evidence-based didactics, collaborative mentorship, and guided practice.

The goal of the training program was to build competence and confidence to provide higher quality healthcare for autistic adults. Within the program, the experts covered multiple key topics, such as understanding diagnostic features of autism, management of commonly co-occurring medical and psychiatric conditions, and advising on how to support autistic adults and their families with accessing resources for employment, education, and other areas that impact the health needs associated with Autism Spectrum Disorder.

To ensure the model was clinically relevant and responsive to patient needs, researchers conducted focus groups to collect qualitative input from autistic adults, their caregivers, and their providers. Their feedback informed the initial program development and refinement. All three focus groups - autistic adults, caregivers, and PCPs--described consistent healthcare barriers and suggestions for improvement. These included a need for improved provider knowledge about autism and common co- occurring psychiatric and medical conditions, a need for improvements to the clinic setting to make it more comfortable for autistic adults, and a need for coordinated and comprehensive health care.

Malow and Mazurek incorporated the feedback from these focus groups into the design of the program curriculum. The research team then tested the six-month program across two cohorts of PCP participants to identify barriers and evaluate the program's feasibility, acceptability, and effects on participant knowledge and self-efficacy. Participants' overall satisfaction with the program was very high--41.7 out of 45.

Average participant knowledge scores increased, and self-efficacy scores improved. Qualitative results reflected that providers felt an improved sense of community, the benefit of interacting with self-advocates, and improved confidence in providing care for autistic patients.

Overall, the results from the new Autism Transition/Adult Healthcare training program demonstrated effectiveness to improve knowledge, practice, and perceived self-efficacy for practitioners caring for autistic adult patients based on the research conducted by Malow and Mazurek's team. The current results demonstrate the use of targeted and comprehensive measures of primary care practitioner knowledge and perceived self- efficacy.

Further studies are needed to evaluate the impact of using the multi-point technology on patient-level outcomes, objective measures of both provider-level practices and patient-level outcomes, and measures of health quality and cost-utilization. The team is planning to use other funding to expand this concept for clinicians caring for adults with ASD to other sites and will use claims data to explore these measures.

Links:

Public and Technical Abstracts: A Novel Provider-Focused Training Program to Serve Transition-Age Youth and Adults with Autism Spectrum Disorder

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