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NICHQ Helps Autism Treatment Centers as Prevalence Rates Rise

April 3, 2012

In the face of rising autism rates, NICHQ helps providers address the disorder’s physical symptoms


By Kristina Grifantini

More children are being diagnosed with an autism spectrum disorder (ASD) than ever before, according to a study recently released by the Centers for Disease Control and Prevention (CDC). The comprehensive report, which gathered data in 2008 from 14 states, found that 1 in 88 children at age 8 had an autism spectrum disorder, up from 1 in 110 in 2006. Health care officials suggest that the elevated rate is likely due to wider screening and better diagnosis than in the past, though other factors may also be at work. The report precedes the kickoff of the National Autism Awareness Month in April.

Aside from the dominant signs of the disorder—impaired social interactions, problems with communication and repetitive behaviors—physical symptoms are also prevalent. Gastrointestinal issues (especially constipation), insomnia, and seizures are common in many children with ASD, though their causes are currently unknown. As more cases of ASD are diagnosed, healthcare systems will need to be better equipped in screening and treating these physical symptoms.

To address this need, the National Initiative for Children’s Healthcare Quality (NICHQ) has established the Collaborative to Improve Care for Children with Autism Spectrum Disorder in coordination with the Autism Treatment Network (ATN) and its Clinical Coordinating Center housed at Massachusetts General Hospital. (The ATN is supported by a grant from the Autism Intervention Research Network on Physical Health (AIR-P) through the Health Resources and Services Administration.)

The current collaborative project is designed to help 14 teams of medical practitioners across the country improve the care and treatment of autism. The project runs from 2011 through 2013 with an initial focus on identifying and treating those physical symptoms. The goal is to use the knowledge gained in this project to help other practitioners throughout the country improve care.

“NICHQ is dedicated to helping improve the care provided in these centers, enhancing the coordination of care and services, and improving access to trained specialists,” says Charles Homer, MD, MPH, and CEO of NICHQ. “We are thrilled to be playing this critical role in helping these programs clarify and standardize care around evidence-based practices and implement effective care models for children with ASD.”

“We’ve learned from parents that their primary care provider doesn’t know much about GI problems in autism,” says Dan Coury, MD, the faculty chair of the Autism Collaborative and the Medical Director of ATN. Roughly half of the children with ASD have GI problems, and almost two thirds have sleep issues, he says. And while less than 1% of the general population experiences seizures, 15-20% of people with ASD suffer from seizures, although usually after childhood.

Beginning in 2008, NICHQ helped the ATN to establish flowcharts and tools intended to facilitate consistent assessment and treatment for constipation, insomnia and seizures among children with ASD. Now, improvement teams from each ATN site will work to implement the use of these tools. For example, doctors are reminded to check the diets for children experiencing constipation or to order an EEG if “red flags” indicating a higher likelihood of a seizure (such as very restless sleep) are present. The participants in the collaborative are also working to streamline coordination of treatment using after-visit summaries and care plan documentation.

“Our goal is to get this message out to providers so they feel as comfortable treating these children as they would other typically developing children with these symptoms,” Dr. Coury says. “The participation of NICHQ has been extremely invaluable. The organization’s knowledge in quality improvement and implementation has helped speed along our efforts to improve practice much more quickly.”

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