Family-Driven Goals to Improve Care for Children With Autism Spectrum Disorder

• Published in: Pediatrics (Evanston) Vol. 142; no. 3; p. 1
• Main Authors: Bellesheim, Katherine R, Cole, Lynn, Coury, Daniel L, Yin, Larry, Levy, Susan E, Guinnee, Meghan A, Klatka, Kirsten, Malow, Beth A, Katz, Terry, Taylor, Jane, Sohl, Kristin
• Format: Journal Article
• Language: English
• Published: United States American Academy of Pediatrics 01-09-2018
• Subjects: Analysis; Autism; Autism Spectrum Disorder - complications; Autism Spectrum Disorder - diagnosis; Autism Spectrum Disorder - therapy; Autistic children; Care and treatment; Child; Child health; Children; Children & youth; Constipation; Constipation - diagnosis; Constipation - etiology; Constipation - therapy; Families & family life; Family nursing; Female; Goals; Health aspects; Humans; Insomnia; Male; Patient Care - methods; Patient Care - standards; Pediatrics; Pervasive developmental disorders; Professional-Family Relations; Quality control; Quality of Health Care - standards; Quality Reports; Sleep disorders; Sleep Initiation and Maintenance Disorders - diagnosis; Sleep Initiation and Maintenance Disorders - etiology; Sleep Initiation and Maintenance Disorders - therapy; Standardization; Surveys and Questionnaires - standards
• ISSN: 0031-4005; 1098-4275
• DOI: 10.1542/peds.2017-3225

Constipation and insomnia are not consistently identified and treated in children with autism spectrum disorder (ASD) despite their high prevalence and deleterious impact in this population. To standardize care, a constipation practice pathway and an insomnia practice pathway were previously developed by Autism Treatment Network clinicians. Our objective was to implement and refine these practice pathways in clinical settings.
Eleven Autism Treatment Network sites participated in a Learning Collaborative (ie, multidisciplinary quality improvement team) and chose to implement either the constipation or insomnia practice pathway in the clinical setting. Families set intervention goals (eg, increase stool frequency, decrease nighttime awakenings) before treatment. Each site began implementation with 1 patient and then increased implementation by factors of 5. Before each increase, the Learning Collaborative evaluated progress and refined the practice pathways. Process improvement was measured primarily by duration until goal attainment and by percentage of families who meet their goals.
Across sites, 82 children with ASD and constipation and 101 children with ASD and insomnia were managed. Difficulties with intervention adherence and communication between providers and families were reported and were subsequently improved with parallel refinements to both practice pathways. The most notable modification was incorporating a goal-setting session in which families generated their own intervention goals (ie, family-driven goals). In this quality improvement initiative, 75% of families met at least 1 constipation or insomnia goal, with the median time to improvement being 6 weeks.
By integrating a family-centered approach into the standardization of care, constipation and insomnia practice pathways may improve engagement, adherence, and management of medical conditions in children with ASD.