A Vanderbilt research program that trains community pediatricians to diagnose autism within their individual practices may lead to more effective treatment of the disorder that now affects an estimated one in 88 children.
Vanderbilt University Medical Center researchers released today in the journal Autism the results of a three-year study that evaluated the effectiveness of a training program designed to enhance autism spectrum disorder (ASD) identification and assessment within community pediatric settings across Tennessee.
After participating in training to learn strategies for conducting rapid diagnostic assessments following positive ASD screenings, pediatricians reported significant changes in their screening and consultation practices, with 85 percent reporting an increase in numbers of children with autism evaluated within their practice. The study also found that pediatric providers were nearly as accurate as specialists in their diagnoses, with agreement seen in more than 90 percent of all cases.
“Ideally, definitive early diagnosis of ASD would be rapidly accomplished by a team of developmental specialists, and children at risk for diagnosis would obtain services immediately after screening positive. The reality is that such diagnostic teams, or even individual professionals, are not available in most locations,” said corresponding author Zachary Warren, Ph.D., associate professor of Pediatrics, Psychiatry and Special Education and director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University. “Even when available, the waitlists for diagnostic services are so long that children referred for evaluation wait extended periods of time for diagnosis. As a parent, I cannot fathom how stressful it would be to be told that your child may have autism, and we’ll let you know the answer to that question in six to 12 months.”
Despite screening initiatives, advocacy efforts and increased public awareness, the most recent Centers for Disease Control and Prevention data regarding autism prevalence suggest that the diagnosis is still not made until 4-5 years of age. The increased prevalence of autism and documented benefits of early intensive intervention have created a need for flexible systems for obtaining accurate, time-efficient diagnoses, the authors wrote.
“Although the field has made great advances in early screening for autism, the steps taken after a positive ASD screening in community settings are much less clear and often problematic for clinicians, families and systems of care alike,” Warren said. “Essentially, more children are being referred for a very limited number of expert diagnostic assessment resources. Because of this, wide-scale screening for ASD at young ages may in fact increase wait times for diagnostic assessment. Given this context, it is critical to develop enhanced ASD-specific diagnostic training programs if we hope to shift the age of diagnosis and promote earlier access to early intervention.”
The training was designed to teach enhanced diagnostic consultation and interactive screening procedures to community pediatricians so that they could offer families the opportunity to be rapidly evaluated within practice rather than being referred to a specialty clinic, where they would likely have to wait many months before being seen.
“The findings provide initial evidence suggesting early accurate diagnosis of autism may be possible and appropriate within many community pediatric practices,” said Amy Swanson, M.A., TRIAD Research and Training Coordinator and lead author of the study. “Given the potentially harmful consequences of lengthy waits for comprehensive diagnostic evaluations, the potential impact of such training programs for advanced autism diagnosis within community practice settings could be quite powerful.”
Key findings:
- Community pediatric providers were more likely to conduct independent autism assessments within their practice, rather than referring the child for outside evaluation.
- Community pediatric providers showed high agreement in ASD classification with expert clinicians.
- A dramatic shift was seen in pediatric providers’ sense of the appropriateness for a child to receive a diagnosis from his or her primary care provider, without or before a comprehensive evaluation.
- A dramatic shift in the comfort level of discussing ASD diagnoses with caregivers was seen.
- There was a significant increase in the number of diagnoses made within respective provider practices.
This study builds on pilot findings from 2009 by presenting a more comprehensive evaluation of the training model and utilizing a broader sample of pediatric providers.
Although this training program targeted the state of Tennessee, Vanderbilt’s research team has also provided this training in several other states and presented the model to the Society for Developmental and Behavioral Pediatrics.
This research was made possible by the Maternal and Child Health Bureau, Health Resource and Services Administration, Department of Health and Human Services (grant number T73MC00050).
