Accuracy of Administrative Database Algorithms for Autism Spectrum Disorder, Attention-deficit/hyperactivity Disorder and Fetal Alcohol Spectrum Disorder Case Ascertainment: a Systematic Review

Introduction: The purpose of this study was to perform a systematic review to assess the validity of administrative database algorithms used to identify cases of autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD) and fetal alcohol spectrum disorder (FASD).

Methods: MEDLINE, Embase, Global Health and PsycInfo were searched for studies that validated algorithms for the identification of ASD, ADHD and FASD in administrative databases published between 1995 and 2021 in English or French. The grey literature and reference lists of included studies were also searched. Two reviewers independently screened the literature, extracted relevant information, conducted reporting quality, risk of bias and applicability assessments, and synthesized the evidence qualitatively. PROSPERO CRD42019146941.

Results: Out of 48 articles assessed at full-text level, 14 were included in the review. No studies were found for FASD. Despite potential sources of bias and significant between-study heterogeneity, results suggested that increasing the number of ASD diagnostic codes required from a single data source increased specificity and positive predictive value at the expense of sensitivity. The best-performing algorithms for the identification of ASD were based on a combination of data sources, with physician claims database being the single best source. One study found that education data might improve the identification of ASD (i.e. higher sensitivity) in school-aged children when combined with physician claims data; however, additional studies including cases without ASD are required to fully evaluate the diagnostic accuracy of such algorithms. For ADHD, there was not enough information to assess the impact of number of diagnostic codes or additional data sources on algorithm accuracy.

Conclusion: There is some evidence to suggest that cases of ASD and ADHD can be identified using administrative data; however, studies that assessed the ability of algorithms to discriminate reliably between cases with and without the condition of interest were lacking. No evidence exists for FASD. Methodologically higher-quality studies are needed to understand the full potential of using administrative data for the identification of these conditions.