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Kennedy Center program seeks to help community providers treat adults with autism

May. 29, 2019, 9:14 AM

From left, Deborah Wofford, Janet Shouse and Beth Malow, MD, MS, are among a team of Vanderbilt Kennedy Center researchers seeking to improve access to care for adults with autism.
From left, Deborah Wofford, Janet Shouse and Beth Malow, MD, MS, are among a team of Vanderbilt Kennedy Center researchers seeking to improve access to care for adults with autism. (photo by Steve Green)

by Kelsey Herbers

Researchers at the Vanderbilt Kennedy Center are on a quest to increase health care capacity for adults with autism by bringing quality care into their communities.

Through a new grant provided by the Department of Defense, the team will design and pilot test a national training model aimed at increasing the knowledge and comfort of community providers in treating adults with autism.

The program, which is derived from the Project ECHO (Extension for Community Healthcare Outcomes) movement, will engage roughly 25 community providers at a time by leveraging videoconferencing to host biweekly virtual clinics with a team of experts from academic medical centers across the country. Each session will include discussions of cases the community providers are managing, and mini didactic sessions led by the expert team.

While the expert team will lead the conversation, sessions are meant to be bidirectional, soliciting advice from community providers on how they might handle a case.

“The challenge is that most community providers report needing more skills and experience to care for this population, and it’s important because we want individuals with autism to reach their full potential,” said Beth Malow, MD, MS, Burry Professor of Cognitive Childhood Development, professor of Neurology and Pediatrics at Vanderbilt University Medical Center, Vanderbilt Kennedy Center investigator and a principal investigator for the study.

“Individuals on the spectrum are woven into our culture. When people have excellent health care, it helps every aspect of life, including education, employment and social interactions.”

Adults with autism have significantly greater health care costs than the general population, yet less preventive care in certain areas, such as screening for cervical cancer. More than half a million people with autism will enter adulthood in the next decade.

Beginning in September, Malow and colleagues from the University of Virginia and the University of Missouri will spend one year conducting focus groups with both primary care providers and adults with autism to design the program. Once the program has been developed, the team will conduct a pilot test with an initial 25 primary care providers from across the country who will engage in hourlong, biweekly sessions for six months.

After the initial cohort has been trained, the team plans to refine the program and test it again with 25 new providers.

The goal of the pilot testing is to figure out the logistics of making the program successful, focusing on questions such as how providers will be recruited and retained and identifying potential barriers and motivators for participation.

“I look at this program as a win-win-win situation,” said Malow. “It’s a win for the patients because they’re getting better care closer to home. The primary care providers win by not having to constantly refer patients elsewhere and by developing expertise in a new skill. VUMC wins because we provide education to our community providers and can engage in community-based research.”

Following the initial three-year study, the team hopes to complete a full-scale clinical trial to determine the effectiveness of the ECHO autism approach for both providers and patients.

“It has been incredible to watch the innovative use of telemedicine practices and technology-enabled learning models build capacity and positively impact the service system as a whole,” said Jeffrey Neul, MD, PhD, Annette Schaffer Eskind Professor and director of the Vanderbilt Kennedy Center.

“Through Dr. Malow’s work with Project ECHO and the telediagnostic work of our Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), the Vanderbilt Kennedy Center is well-positioned to continue its trajectory of increasing access to quality health care and supports in underserved areas.”

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