A multi-center retrospective investigation of diagnostic, referral, and early management pathways for pediatric patients with Autism Spectrum Disorder and Developmental Coordination Disorder.
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Background: Autism Spectrum Disorder (ASD) and Developmental Coordination Disorder (DCD) can co-occur, but diagnostic procedures vary widely. Some overlap exists in behavioral, motor, and social problems in ASD and DCD, which adds ambiguity to the diagnostic process. Provider- and patient-centered factors contribute to the differences in pathways to care; understanding these factors may lead to more robust guidelines for assessment of patients with suspected ASD, DCD, and ASD+DCD. Objective: Measure prevalence and describe the diagnostic pathway of ASD+DCD at 3 healthcare sites, and describe the diagnostic pathways reported for ASD, DCD, and ASD+DCD. Identify provider- and patient- centered variables related to diagnostic, early management, and referral patterns. Hypothesis: A combination of patient- and provider-centered variables will contribute to differences in diagnostic and management outcomes for patients with ASD, DCD, and ASD+DCD. Methods: This retrospective study evaluated patients diagnosed with ASD, DCD, and ASD+DCD in the Cook Children’s Medical Center (CCMC) network, UNT Health Science Center (UNTHSC), and the Child Study Center (CSC). Charts included patients ages 0-21 years at the time of first entry, with documented diagnosis of ASD, DCD, or ASD+DCD. We collected primary and co-occurring diagnoses, medications, developmental milestones, test scores, social history, time between first concern visit and diagnosis, and services consulted. Results: At CCMC, the number of patients with ASD was 5520, with DCD was 424, and ASD+DCD was 59. At CSC the number of patients with ASD is 1559, with DCD is 46, and ASD+DCD, 232. UNTHSC data collection will take place in March 2018. We used a stratified random sample of 50 subjects from each diagnostic group (ASD, DCD, ASD+DCD) for initial analyses. Analyses are ongoing, and include correlations and analyses of variance to identify relationships and group differences among patient- and provider-centered variables. Conclusion: The number of patients with ASD, DCD, and ASD+DCD served by CCMC and CSC is significantly lower than anticipated given prevalence estimates. ASD+DCD prevalence was higher at CSC than at CCMC. Assessment and diagnostic procedures at CSC are more extensive, and include developmental motor testing. Higher surveillance at this site may explain the higher observed prevalence of ASD+DCD. Further planned analyses will illuminate patient- and provider-centered differences among the 3 groups.