Examination of the impact of the Get SET Early program on equitable access to care within the screen-evaluate-treat chain in toddlers with autism spectrum disorder
Authors: Pham Christie , Bacon Elizabeth C , Grzybowski Andrea , Carter-Barnes Cynthia , Arias Steven , Xu Ronghui , Lopez Linda , Courchesne Eric , Pierce Karen 
Published: January 2023

Delays in autism spectrum disorder identification/services could impact developmental outcomes. Although trends are encouraging, children from historically underrepresented minority backgrounds are often identified later and have reduced engagement in care. It is unclear if disparities exist throughout the screen-evaluate-treat chain, or if early detection programs such as Get SET Early that standardize these steps are effective countermeasures. Pediatricians/primary care providers administered Communication and Symbolic Behavior Scales IT Checklist screens at 12-, 18-, and 24-month well-baby examinations, and parents designated race, ethnicity, and developmental concerns. Toddlers who scored in the range of concern, or whose pediatricians/primary care providers had concerns, were referred for evaluations. Rates of screening and evaluation engagement within ethnic/racial groups were compared to U.S. Census proportions. Age at screen, evaluation, and treatment and quantity was compared across groups. Regressions examined whether key factors were associated with ethnicity or race. No differences were found for mean age of screen, evaluation, initiation of behavioral therapy, or quantity received between racial and ethnic groups. Historically underrepresented minority children were more likely to fall into the range of concern, referred for evaluations, and have their parents express developmental concerns. Although there remain gaps within the pipeline, implementation of systemized programs can be effective in ensuring equitable access to resources across communities.

Lay abstract

Delays in autism spectrum disorder identification and access to care could impact developmental outcomes. Although trends are encouraging, children from historically underrepresented minority backgrounds are often identified at later ages and have reduced engagement in services. It is unclear if disparities exist all along the screen-evaluation-treatment chain, or if early detection programs such as Get SET Early that standardize, these steps are effective at ameliorating disparities. As part of the Get SET Early model, primary care providers administered a parent-report screen at well-baby examinations, and parents designated race, ethnicity, and developmental concerns. Toddlers who scored in the range of concern, or whose primary care provider had concerns, were referred for an evaluation. Rates of screening and evaluation engagement within ethnic/racial groups were compared to US Census data. Age at screen, evaluation, and treatment engagement and quantity was compared across groups. Statistical models examined whether key factors such as parent concern were associated with ethnicity or race. No differences were found in the mean age at the first screen, evaluation, or initiation or quantity of behavioral therapy between participants. However, children from historically underrepresented minority backgrounds were more likely to fall into the range of concern on the parent-report screen, their parents expressed developmental concerns more often, and pediatricians were more likely to refer for an evaluation than their White/Not Hispanic counterparts. Overall results suggest that models that support transparent tracking of steps in the screen-evaluation-treatment chain and service referral pipelines may be an effective strategy for ensuring equitable access to care for all children.