Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio;
Division of Developmental and Behavioral Pediatrics and.
Pediatrics. 2020 Apr;145(Suppl 1):S20-S29. doi: 10.1542/peds.2019-1895E.
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.
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.
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.
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.
总结自闭症学习健康网络的基线数据和经验教训，旨在改善自闭症谱系障碍（ASD）儿童的护理和预后。我们描述了挑战性行为、共病医疗状况、生活质量（QoL）、接受推荐的健康服务情况以及下一步措施。
这是一项针对 13 个地点接受 ASD 治疗的 3 至 12 岁儿童的横断面研究。父母报告 ASD 儿童的特征作为与我们网络目标相关的结果测量，这些目标旨在降低挑战性行为的发生率、提高生活质量和确保接受推荐的健康服务。父母完成了一份关于行为挑战、共病状况、健康服务以及患者报告的结果测量信息系统全球健康测量和异常行为检查表的调查，以评估生活质量和行为症状。
分析纳入了 530 名儿童。大多数父母（93%）报告了挑战性行为，经常注意到注意力缺陷/多动障碍症状、易激惹和焦虑。异常行为检查表多动和易激惹分量表的平均（SD）得分为 17.9（10.5）和 13.5（9.2）。患者报告的结果测量信息系统全球健康测量总分 23.6（3.7）低于一般儿科人群的报告分数。大多数儿童在过去 12 个月中接受了推荐的儿童保健（94%）和牙科保健（85%）。
这些基线数据（1）证实了关注解决挑战性行为的重点；（2）优先考虑了注意力缺陷/多动障碍、易激惹和焦虑三个行为领域；（3）确定了减少行为严重程度的目标和改善数据收集的策略。
