788 - Understanding Variation in Provider Referral Rates to Early Intervention for Children with Developmental Delays

Publication Number: 788.6949

Michelle O. Reinitz, Doernbecher Children's Hospital at Oregon Health & Science University, Portland, OR, United States; Zoe Kilmer, Oregon Health & Science University School of Medicine, Portland, OR, United States; Gabriella Tangkilisan, Doernbecher Children's Hospital at Oregon Health & Science University, Portland, OR, United States; Benjamin Sanders, Doernbecher Children's Hospital at Oregon Health & Science University, Portland, OR, United States; Jonathan Junqua, Doernbecher Children's Hospital at Oregon Health & Science University, Beaverton, OR, United States; Mohadeseh Solgi, Oregon Health & Science University School of Medicine, Portland, OR, United States; Katharine Zuckerman, Oregon Health & Science University School of Medicine, Portland, OR, United States; Lilah King-Hails, Doernbecher Children's Hospital at Oregon Health & Science University, Astoria, OR, United States

Background: Early detection and treatment of developmental disabilities (DD), including Autism Spectrum Disorder (ASD), improves language, IQ, and adaptive outcomes. Guidelines recommend referral to Early Intervention (EI) upon positive ASD/DD screening in infant/toddler well child checks. However, children screening positive for ASD/DD are not always referred to EI.

Objective: This project aimed to understand why pediatricians do and do not refer children with positive ASD/DD screens to EI.

Design/Methods: We conducted qualitative interviews with pediatricians who participated in Autism ALERT, a pilot trial of family navigation for children with autism symptoms. We determined pediatrician EI referral rates after positive ASD or DD screeners using previously- collected data, then selected pediatricians with a range of referral rates for interviews. Interview guide questions probed the referral decision-making process; a Chart Stimulated Recall explored clinical management of 2 of the pediatrician’s prior patient cases with positive screens. Transcripts were coded in Dedoose by 2 investigators using phenomenology; the coding framework was improved as themes emerged. Coding discrepancies were resolved by consensus.

Results: 15 pediatricians participated from 7 Oregon clinics (11 rural, 4 urban). Three themes influencing referral decisions emerged: (1) provider’s clinical observations, (2) parental context, and (3) screening tool results (Figure, Table). The first theme, Providers’ clinical observations, included having adequate time with child/family, clinical experience diagnosing DD, and trust building with parents.
For the theme “clinical observations,” providers reported weighing their observed need for developmental evaluations versus the potential “social capital” and trust providers can lose by pushing reluctant families. The theme “parental context” included readiness for referral (influenced by competing resource strain, socioeconomic factors, and disability stigma) and level of parental concern surrounding developmental progress (based on prior family history and parental developmental knowledge). The theme “screening tool results,” included severity of result, and reliability in time-constrained/chaotic clinic settings, accuracy of parental inputs, and trialability of specific screener items.

Conclusion(s): Decisions to refer to EI services are complex, involving a balance between provider observations, parental contexts, and screening tool results. Understanding these complexities may raise awareness of barriers to referral and improve early referral practices.

Table 1
Results table with quotations

Figure 1
Conceptual Map