Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network
OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning Health
Network, designed to improve care and outcomes for children with autism spectrum disorder
(ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life
(QoL), receipt of recommended health services, and next steps.
METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at
13 sites. Parent-reported characteristics of children with ASD were collected as outcome
measures aligned with our network’s aims of reducing rates of challenging behaviors,
improving QoL, and ensuring receipt of recommended health services. Parents completed
a survey about behavioral challenges, co-occurring conditions, health services, and the
Patient-Reported Outcomes Measurement Information System Global Health Measure and
the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively.
RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majority
of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms,
irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity
and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported
Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7)
was lower than scores reported in a general pediatric population. Most children had received
recommended well-child (94%) and dental (85%) care in the past 12 months.
CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors;
(2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability,
and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to
improve data collection.