Associations Among Referral Concerns, Screening Results, and Diagnostic Outcomes of Young Children Assessed in a Statewide Early Autism Evaluation Network (original) (raw)

2021, The Journal of Pediatrics

Objective(s): To examine associations between referral concerns, screening results, and diagnostic outcomes for young children evaluated across a statewide primary care network for early screening and diagnosis of ASD. Study Design: The Early Autism Evaluation (EAE) Hub system was developed to increase developmental screening and improve access to timely ASD evaluations in local communities. In 2019, 858 children (ages 18-48 months; 40% diagnosed with ASD) received ASD evaluations across 12 EAE Hubs. Data on PCP-and caregiver-reported referral concerns, MCHAT-R/F and ASQ-3, and diagnostic outcome were collected. Results: Among children evaluated, there was low concordance between PCP and caregiver referral concern. While a positive MCHAT-R/F screen was associated with PCP but not caregiver-reported ASD referral concern, there was a significant linear relationship between MCHAT-R/F raw scores and both PCP and caregiver ASD referral concern. A different pattern of ASQ-3 delays was found to be associated with PCP-as compared to caregiver-reported ASD referral concern. Finally, PCP-reported ASD referral concern, positive MCHAT-R/F, and ASQ-3 Communication and Personal Social delays were associated with a significantly higher likelihood of subsequent ASD diagnosis. Conclusion(s): Understanding how community PCPs use surveillance and screening data, the extent to which PCPs and caregivers have shared understanding and engage in collaborative decision-making about evaluation referral, and how these factors relate to diagnostic outcome has the potential to impact educational efforts for both PCPs and caregivers of young children, as well as inform the development of more efficacious early identification approaches. 28) for early identification of children with ASD. Furthermore, recent research has revealed inconsistencies in how PCPs use screening results to guide referral for diagnostic evaluation (29, 30). Substantial progress has been made in our understanding of developmental surveillance and screening practices with increasing attention being paid to the accuracy and limitations of screening tools for identifying young children with ASD. Yet, little research has examined how screening results may be used by PCPs and caregivers. In the present study, we leverage the Early Autism Evaluation (EAE) Hub system (31), a statewide infrastructure for early screening and diagnosis of young children at-risk for ASD, in order to better understand associations between referral concerns (i.e., the developmental and/or behavioral concerns of PCPs and/or caregivers that prompt referral for evaluation), screening results, and diagnostic outcomes for children evaluated in this community primary care-based network. Specifically, we sought to 1) describe PCP-and caregiver-reported primary referral concerns and determine the extent to which PCPs and caregivers agree on referral concerns, 2) examine associations between results of developmental and ASD screening tools and ASD concerns at referral, and 3) identify how ASD referral concerns, screening results, and child age may be associated with ASD diagnostic outcome. Methods Data presented in this report were collected as part of the Indiana University School of Medicine (IUSM) Early Autism Evaluation (EAE) Hub system quality improvement initiative. To minimize data collection burden and remain in compliance with IRB guidelines for quality improvement efforts, no protected health information or demographic data was collected.