(1118) Administrative Databases: Friend or Foe in Pediatric Cardiomyopathy

BackgroundCardiomyopathy (CM) is a rare childhood disease associated with morbidity and mortality. Limited data exist on pediatric CM in Canada. Given the rare nature, single-center studies are not sufficiently powered to address important questions. Therefore, administrative health data may serve as a resource for the study of childhood CM. The goal of this study was to validate the accuracy of International Classification of Diseases (ICD) based algorithms to identify pediatric CM in health databases using a clinical registry as the gold standard.MethodsThe clinical registry was compiled from outpatient and inpatient records at the Stollery Children’s Hospital (01/01/13–31/12/21). Patients were categorized as having CM or screened without CM. Data was linked to administrative health databases using the patient’s Unique Lifetime Identifier. Algorithms based on the presence of ICD-10 codes for CM were than evaluated and cross-tabulations against the clinical registry were generated. Accuracy, positive predictive value (PPV), negative predictive value (NPV), sensitivity and specificity were calculated.ResultsThe clinical registry had 90 patients with CM and 249 screened without CM. The algorithms ruled out CM (high NPV) but had variability in the ability to diagnose CM (PPV). The algorithm that performed the best was based on a diagnosis of CM in a hospitalization or 2 ambulatory visits.ConclusionsA combination of inpatient and outpatient databases can be used, with acceptable accuracy, to identify pediatric patients with CM. This finding allows for the use of the identified algorithm for the comprehensive study of pediatric CM in Canada.