Characterization of a real-world population with pediatric epilepsy point-of-care standardized data collection as a tool for healthcare quality improvement and disparities research in Canada.

Objective: Electronic health records offer the opportunity for quality-improvement (QI) initiatives addressing health disparities in epilepsy care. The Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children's Hospital implemented point-of-care data entry into a standardized pediatric epilepsy electronic note as part of routine clinical care to support QI initiatives. Our study validated collected data by assessing the prevalence of patient characteristics, ethno-racial background, and 4 of the most common severe epilepsy syndromes: infantile epileptic spasms, Dravet, Lennox-Gastaut, and developmental epileptic encephalopathy with spike-wave action in sleep.

Methods: Demographic and clinical characteristics were drawn from the entire population of pediatric patients (≤18 y) with ≥ 1 standardized electronic note from January 1, 2016, to March 23, 2022. Descriptive statistics were compared with published sources.

Results: The dataset contained 18,889 notes from 3588 patients and was in general agreement with published literature, with a slight male predominance and focal onset more common than generalized onset diagnosis. Data for the 4 severe epilepsy syndromes were also similar. Using open-ended questions, self-reported parental ethno-racial data were available for 49.6 % of patients; this increased to 95.5 % (n = 1861) in those patients whose first note was a standardized electronic note. Results generally reflect Canadian census findings and published literature.

Significance: The PEOIP is a comprehensive pediatric clinical dataset in a tertiary epilepsy center and reflects published literature for pediatric patients with epilepsy and data for the 4 severe epilepsy syndromes were also similar. for similar populations. Ethno-racial background data were reliably collected at point of care and provide a representative sample of pediatric epilepsy in Alberta. The PEOIP dataset represents a valuable baseline for QI initiatives and disparities research.