17020
Family Driven Goals Improve Sleep in Children and Youth with Autism Spectrum Disorder
Sleep concerns are common in children with autism spectrum disorder (ASD) and are estimated to affect 50-80% of children with ASD. Children with ASD commonly experience sleep onset delay, night time awakenings and bedtime resistance. Despite this high incidence, studies show that providers identify sleep concerns in only 8% of patients.
The Autism Intervention Research Network on Physical Health (AIR-P)/ Autism Speaks Autism Treatment Network (AS ATN), in coordination with NICHQ (National Initiative for Children’s Healthcare Quality), established a Learning Collaborative to Improve Care for Children with Autism Spectrum Disorder (ASD). Seven teams in this learning collaborative supported families to track sleep and improve sleep using quality improvement methodology.
Objectives:
The primary aim was to identify a way to improve sleep in children with ASD by collaborating with families. The secondary aim was to identify a systematic process for clinicians to ask, assess, and address sleep concerns and then adjust based on family goals and family reported data.
Methods:
Seven AIR-P/AS ATN sites were chosen to participate in the insomnia stream. An “N of 1” approach was used by each site to intensively work with one child and his or her family to optimize care for insomnia. Children were screened to identify those with insomnia. Then, we met with families to assess their willingness to test changes with their child, and report on their progress weekly. If so, family-directed goals and feasible strategies were set for the family to try. Families reported data on their goals with up to four metrics. The improvement team coached families weekly based on their feedback about their child’s progress. The seven improvement teams also met biweekly via webinar to discuss, share learning and review data. The learning collaborative tested small tests of change with each family and as a group, including families of varying needs and complexity levels. Sites developed systems to ask about sleep at each visit and set family goals for addressing sleep concerns.
Teams gathered data from families on a daily and/or weekly basis regarding sleep, using innovative tools including Research Data Electronic Capture (REDCap), Google Drive, FluidSurvey, text messaging, phone calls and electronic medical record portals.
Results:
42 families participated in the Insomnia Stream. Through continuous process improvement, teams developed a system that allowed families to set family-led goals and achieve success. Median time to one sleep-related improvement was 5 weeks. Median time to two sleep-related improvements was 7.5 weeks. Examples of sleep-related improvements include reductions in time to fall asleep, less resistance at bedtime, and decreased night wakings.
Conclusions:
Sleep concerns are common for children with ASD. Sleep is underidentified by providers caring for these children. By developing a process that systematically assesses sleep concerns and sets family-driven goals for improvement with consistent follow-up, sleep concerns may be reduced. Through this process teams from across North America engaged in small tests of change to develop a system that can be spread to other providers and settings.