Practices Improve Constipation Treatment for Children with Autism Spectrum Disorder
March 18, 2013
By Kristina Grifantini
A quality improvement team at Children’s Hospital Los Angeles (CHLA) has made gains in developing a treatment plan for addressing constipation in children with autism spectrum disorder (ASD). The CHLA team is part of a national effort lead by the Autism Speaks Autism Treatment Network (ATN) and the National Initiative for Children’s Healthcare Quality (NICHQ) to improve the care of children with ASD.
Many children with autism spectrum disorder reject certain foods due to taste, texture or newness, leading to constipation that can affect their behavior. Despite this known problem, physical symptoms in autism are often overlooked by the health establishment. Some practitioners aren’t sure how to treat symptoms of constipation in children with ASD. What’s more, because many children with ASD have difficulty communicating, they may not be able to convey their pain or discomfort.
To address inconsistencies in care, several teams in NICHQ’s Collaborative to Improve Care for Children with Autism Spectrum Disorder are testing and refining a plan for treating constipation by gathering daily data from families and developing individualized treatment plans. Teams are focused on measuring and improving three main components of constipation: pain, consistency of stools and frequency.
“The health system currently lends itself to a really inconsistent model of care in the community,” says CHLA improvement team lead Larry Yin, MD, MSPH. “For instance, in some places the quality of care may not be standard or the family doctor might be a general practitioner with no specialty training at all.” Yin is also the clinical services director and medical director of the Boone Fetter Autism Clinic and the CA-LEND Rett Clinic at CHLA.
Maria Trejo, who lives in Inglewood, Calif., works with the CHLA team to help improve her son’s constipation. She says her son, Cesar, has ASD and began developing issues with constipation at age one. Now 9 years old, Cesar’s constipation has abated, but it’s only since working with CHLA team.
“We went to our primary care doctor two years ago for constipation. He prescribed Cesar a medication but it didn’t work,” says Trejo*. “Before when Cesar used to go to therapy it seemed he couldn’t focus — he had a lot of gas and the therapist would tell me he doesn’t feel good and his behaviors were uncontrollable.”
Yin and his team had a conference call with the family and confirmed that constipation was painful and a major obstacle in the quality of life for the child as well as for the family. The team prescribed one teaspoon of mineral oil a day and one cup of water with an anti-constipation medication, as well as more fruit and vegetables (particularly figs) and shakes. The team gave Trejo a list of foods that are high in fiber and recommended developing a consistent daily toilet time for Cesar. ATN site coordinator and translator Marcia Higareda checked in with Trejo every other day and now every week to collect data on the frequency and ease of bowel movements and reported pain.
“This project has helped my son lot. Now he seems more comfortable in his therapy and his behavior improved and he has not had gas,” says Trejo. “Cesar eats more types of food and goes to the restroom more consistently. What helped him a lot was me being more consistent with him.”
By closely working with one family and gathering data on the family’s progress, the team is able to see what works and what doesn’t, and refine a general treatment plan for constipation in children with autism spectrum disorder. As the team works with Trejo and her son, the group is also refining a roadmap to give parents clear, easy instructions on what to do for different levels of constipation intensity.
“Before, I’d send a laundry list of 10 things to do and families are left wondering which is the most important,” says Yin. “With this experience we’ve been able to pare it down a bit and say let’s do this first and let’s see what happens. It’s less overwhelming for the parents.”
The team will now work with five new families, gathering data and adjusted regimes to refine the care plan to ultimately share with other practitioners. They — like the other 14 ATN centers across North America — will test and refine a general treatment plan to share with other physicians.
“This is a way to standardize care so that everybody’s approaching issues of constipation in the same way,” says Yin. “By working with this family one-on-one, we can develop a specific individualized plan for that family and work on implementation, monitoring, reassessment, and rethinking intervention and sometimes diagnosis. Ultimately, we will extrapolate that experience to a larger group.”
*Many thanks to Marcia Higareda for translating Maria Trejo’s quotes from Spanish into English.