Teenagers and young adults with autism spectrum disorder (ASD) often have complicated medical and mental health needs, but few primary care providers are trained to treat these patients.
In an effort to improve access to care for these individuals, a researcher from the University of Missouri School of Medicine teamed up with other national experts to study a pilot program designed to train and mentor primary care physicians (PCPs) in best-practice care for those with ASD transitioning from youth to adulthood. They discovered the program significantly improved the PCPs’ confidence in caring for youth and young adults with ASD.
“We know that identifying young people with autism and symptoms of autism is important because early intervention is important,” said senior author Kristin Sohl, MD, associate professor of pediatrics at the MU School of Medicine and a pediatrician at MU Health Care. “But as young children diagnosed with autism are aging, we’ve realized that over 500,000 with autism are turning 18 every single year. And they need ongoing medical care and support in their daily lives. Unfortunately, the health care system is not organized to support them. That’s why we devised this pilot program.”
The Extensions for Community Healthcare Outcomes (ECHO) Autism Transition study involved 12 PCPs who completed a weekly, one-hour telehealth session for three months. The participants received mentorship and training in best-practice care for patients with ASD transitioning from youth to adulthood between the ages of 14 and 25. The ECHO Autism expert team included an adult neurologist, an internal medicine-pediatrics physician, a clinical psychologist, a sleep specialist, a parent advocate and a young adult self-advocate with ASD.
“We presented several cases for discussion during the program,” Sohl said. “Those cases addressed topics like puberty, sexuality, guardianship, how to manage money and other issues related to common pitfalls that families need to address,” Sohl said.
The PCP’s completed a questionnaire prior to attending the first session and another after the final session. Survey results showed 75% of the participants changed their practice as a result of the program, 67% reported changes in relationships and interactions with patients with ASD and 100% indicated they would be interested in working with youth and young adults with ASD in the future.
“Primary care physicians get such little training in any kind of developmental disability,” Sohl said. “So when your practice has a fair number of individuals with developmental disabilities and you’re not sure what to do – it can make you feel helpless. Results show this ECHO Autism program gave participant doctors and practitioners the confidence to treat this growing patient population.”
The next step for researchers is to expand the study to a larger sample while evaluating patient outcomes to help fine tune the mentoring model.
In addition to Sohl, the study’s lead author is Micah Mazurek, PhD, associate professor at the University of Virginia. Other co-authors represented the University of Washington, Vanderbilt University Medical Center, Florida International University, the University of Texas at Austin, Nationwide Children’s Hospital and Massachusetts General Hospital
The study, “ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder,” was recently published in the journal Autism. Research reported in this publication was supported by the Health Resources and Services Administration under a cooperative agreement with the Autism Intervention Research Network on Physical Health. The authors of the study declare that they have no conflicts of interest related to this study. The content is solely the responsibility of the authors and does not necessarily represent the views of the funding agencies.