McNally Keehn : Diagnostic Accuracy of Primary Care Clinicians Across a Statewide System of Autism Evaluation
Diagnostic Accuracy of Primary Care Clinicians Across a Statewide System of Autism Evaluation
Rebecca McNally Keehn
Department of Pediatrics, Indiana University School of Medicine
Rebecca McNally Keehn PhD,1 Nancy Swigonski MD, MPH, MBA, FAAP,1 Brett Enneking PsyD,1 Tybytha Ryan PhD,1 Patrick Monahan PhD,2 Ann Marie Martin PhD,1 Lisa Hamrick MS,3 Girija Kadlaskar PhD,4, 5 Angela Paxton BS,1 Mary Ciccarelli MD1 & Brandon Keehn PhD4
1 Department of Pediatrics, Indiana University School of Medicine
2 Department of Biostatistics and Health Data Science, Indiana University School of Medicine
3 Department of Psychological Sciences, Purdue University
4 Department of Speech, Language & Hearing Sciences, Purdue University
5 MIND Institute, University of California Davis
Our objective was to evaluate the diagnostic accuracy of the Early Autism Evaluation (EAE) Hub system, a statewide network that provides specialized training and ongoing collaborative support to community primary care providers (PCP) in the diagnosis of young children at risk for autism spectrum disorder (ASD).
EAE Hub clinicians referred a consecutive sample of children, ages 14-48 months, to this prospective diagnostic study for blinded follow-up expert evaluation including assessment of developmental level, adaptive behavior, and ASD symptom severity. The primary outcome was agreement on categorical ASD diagnosis (present/absent) between EAE Hub clinician (index diagnosis) and ASD expert (reference standard).
Among 126 children (mean age: 2.6 years; 77% male; 14% Latinx; 66% non-Latinx White), 82% (n=103) had consistent ASD outcomes between the index and reference evaluation. Sensitivity was 81.5%, specificity was 82.4%, positive predictive value was 92.6%, and negative predictive value was 62.2%. There was no difference in accuracy by EAE Hub clinician or site. Across measures of developmental and adaptive skills, there were significant differences between true positive (TP) and false negative (FN) cases (all Ps<0.001; Cohens d=1.1-1.4), with TP cases evidencing greater impairment.
Community-based primary care clinicians who receive specialty training can make accurate ASD diagnoses in most cases. Diagnostic disagreements were predominately FN cases in which EAE Hub clinicians had difficulty differentiating ASD and global developmental delay. FN cases were associated with a differential diagnostic and phenotypic profile.
Translational/Human Health Impact:
This research has significant implications for the development of future population health solutions that address ASD diagnostic delays. Our findings suggest that most young children can be served within the primary care setting, potentially leading to improved access to specialists for children who require a higher level of diagnostic expertise.