Children with ASD improve insomnia, constipation symptoms using family-driven goals
Children with autism spectrum disorder, or ASD, achieved greater improvement of constipation and insomnia symptoms when families were involved in setting treatment goals compared with prescriptive treatment goals set by clinicians, according to study results published in Pediatrics.
“Sleep disturbance and constipation are significant concerns for individuals with [ASD],” Kristin Sohl, MD, FAAP, an associate professor of clinical child health at the University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders, told Infectious Diseases in Children. “They can appear refractory to common treatment options including standardized behavioral intervention and/or medication; however, we learned that engaging families in goal-setting around these issues and applying quality improvement strategies like small tests of change can yield meaningful improvement for children with autism and their families.”
Sohl and colleagues sought to implement a constipation practice pathway and an insomnia practice pathway that was previously developed by Autism Treatment Network clinicians to standardize care for children with ASD.
Eleven North American academic medical centers participated in a Learning Collaborative — a multidisciplinary quality improvement team established by the National Institute for Children’s Health Quality, the Autism Speaks Autism Treatment Network and the Autism Intervention Research Network on Physical Health. The centers chose to implement either the constipation or insomnia practice pathway. Families determined treatment goals — including increasing stool frequency or decreasing nighttime awakenings — before the beginning of treatment. Each center started the pathway with just one patient, after which time the Learning Collaborative evaluated and refined the pathway. Then, additional patients were started on the pathway.
The researchers studied 82 children with ASD and constipation and 101 children with ASD and insomnia who participated in the intervention. They reported difficulties with intervention adherence and communication between families and providers. The Learning Collaborative teams implemented refinements to practice pathways, including the development of more family-driven goals compared with the original goal-setting process. Individualized family-driven goals included reducing bedtime anxiety and accepting medications or high-fiber foods.
The researchers reported that 75% of families met at least one constipation or insomnia goal within a median time of 6 weeks to improvement. In the group of children with constipation, 85% met at least one goal, 11% did not achieve any goal and 4% were lost to follow-up. Of the children who met one goal, 84% of families reported a “remission” of constipation.
Six children in the insomnia group were referred to sleep specialists or other providers. Of the remaining 95 children in the insomnia group, 66% met at least one goal, 10% did not meet any insomnia goals and 15% dropped out from weekly follow-up meetings.
“We encourage all providers seeing children with autism to ask about sleep concerns and constipation concerns at every visit and then engaging families in a conversation about a small change that can be tested to assess improvement.” Sohl said. – by Bruce Thiel
Disclosures: The authors report no relevant financial disclosures.