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Helping Pediatricians Improve Treatment of Autism-Related Constipation

At world’s largest pediatrics conference, Autism Speaks ATN clinicians present findings of project to improve treatment of constipation
October 13, 2014

At world’s largest pediatrics conference, Autism Speaks ATN clinicians present findings of project to improve treatment of constipation 

(Oct 13, 2014) Today, specialists in the Autism Speaks Autism Treatment Network (ATN) briefed the nation’s pediatricians on ways to speed the effective treatment of chronic constipation in patients who have autism. Their presentation – “Improving Constipation Symptoms in Individuals with Autism Spectrum Disorder” – took place at the annual meeting of the American Academy of Pediatrics, in San Diego.

In an interview before the presentation, ATN Medical Director Daniel Coury and co-presenter Lynn Cole described their key findings. Dr. Coury is a developmental pediatrician at Nationwide Children’s Hospital, in Columbus, Ohio. Cole is a pediatric nurse practitioner at the University of Rochester Medical Center.

“Constipation is one of the most common complaints of families who come to our centers, and many families report great difficulty and slow progress addressing this issue,” Dr. Coury explained. “We set out to improve care by providing close monitoring and adjustment to the children’s treatment plan.”

The treatment-improvement project was made possible by the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health  (AIR-P). It involved the collaboration of 94 families of children with chronic constipation receiving care at four ATN sites (The University of Rochester Medical Center, Children’s Hospital Los Angeles, Arkansas Children’s Hospital and Children’s Hospital Colorado).

Over the course of the program, the investigators identified several key elements to achieving speedier resolution of chronic constipation. They included:

1. Families should take the lead in establishing treatment goals. “For one family, goals might include their child being able to make a bowel movement without pain,” Cole explained. “For another, it might include having more than one bowel movement a week or having a child take his constipation medicine without a fight.”

2. Move from physician-led to team-based care. Treatment of chronic constipation should involve as many of the patient’s caregivers as possible. In addition to parents and doctors, this can include nurses, behavioral therapists, daycare staff, behavioral therapists, etc.

3. Emphasize problem-solving over prescriptions. “Often the solutions to a chronic problem like constipation involve more education and problem-solving than medicine,” Cole said. The investigators made use of Autism Speaks’ ATN/AIR-P Guide for Managing Constipation. “We gave copies to families and sent them to their primary care providers to help them understand what we were doing,” Cole explained. 

4. Ensure timely follow-up to adjust treatment as needed. As no one treatment plan solves all constipation problems, timely follow up is crucial for adjusting strategies. During their investigation, the investigators tried various approaches to see what kinds of follow-up worked best. “We found that families did best if a nurse followed up with a phone call or email every week or two until the problem was solved,” Cole said. The team saw less success communicating with families through online treatment tracking forms.

5. Give families tools to deal with future flare-ups. Once chronic constipation is resolved, it’s important to have a management plan at the ready when flare-ups occur. The idea is to promptly resolve the problem before it becomes chronic again, Cole explains. To this end, the team encouraged families to use the “Constipation Action Plan” in the appendix of the ATN/AIR-P constipation guide.

With these steps, 84 percent of the 94 families achieved at least one of their constipation-treatment goals. More than 70 percent reached two or more goals. More than 60 percent of the families reached their treatment goals in four weeks or less. Seventy percent reached them within two months.