Clinical Epidemiology (Apr 2022)
Validation of Pediatric Idiopathic Generalized Epilepsy Diagnoses from the Danish National Patient Register During 1994‒2019
Abstract
Magnus Spangsberg Boesen,1 Melita Cacic Hribljan,2 Søren Kirchhoff Christensen,1 Amalie Wandel Klein-Petersen,3 Sahla El Mahdaoui,4 Malini Vendela Sagar,5 Emilie Schou,5 Anna Korsgaard Eltvedt,6 Malene Landbo Børresen,3,7 Maria Jose Miranda,6 Alfred Peter Born,3 Peter Vilhelm Uldall,3 Lau Caspar Thygesen8 1Department of Neurology, Zealand University Hospital, Roskilde, Region Zealand, Denmark; 2Department of Clinical Neurophysiology, Copenhagen University Hospital, Copenhagen, Capital Region, Denmark; 3Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Copenhagen, Capital Region, Denmark; 4Department of Neurology, Danish Multiple Sclerosis Center, Copenhagen University Hospital, Glostrup, Capital Region, Denmark; 5Department of Neurology, Copenhagen University Hospital, Copenhagen, Capital Region, Denmark; 6Department of Paediatrics, Herlev Hospital, Herlev, Capital Region, Denmark; 7Department of Epidemiology Research, Statens Serum Institut, Copenhagen, Capital Region, Denmark; 8National Institute of Public Health, University of Southern Denmark, Copenhagen, Capital Region, DenmarkCorrespondence: Magnus Spangsberg Boesen, Department of Neurology, Zealand University Hospital, Sygehusvej 10, Roskilde, 4000, Denmark, Tel +45 27634945, Email [email protected]: To identify pediatric idiopathic generalized epilepsy (IGE) during 1994– 2019 using ICD-10 codes in the Danish National Patient Register and anti-seizure prescriptions in the Danish Prescription Database.Study Design and Setting: We reviewed the medical records in children with ICD-10 codes for IGE before 18 years of age, and pediatric neurologists confirmed that the International League Against Epilepsy criteria were met. We estimated positive predictive values (PPV) and sensitivity for ICD-10 alone, including combinations of codes, anti-seizure prescription, and age at first code registration using medical record-validated diagnoses as gold standard.Results: We validated the medical record in 969 children with an ICD-10 code of IGE, and 431 children had IGE (115 childhood absence epilepsy, 97 juvenile absence epilepsy, 192 juvenile myoclonic epilepsy, 27 generalized tonic-clonic seizures alone). By combining ICD-10 codes with antiseizure prescription and age at epilepsy code registration, we found a PPV for childhood absence epilepsy at 44% (95% confidence interval [CI]=34%‒54%) and for juvenile absence epilepsy at 44% (95% CI=36%– 52%). However, ethosuximide prescription, age at ethosuximide code registration before age 8 years and a combination of ICD-10 codes yielded a PPV of 59% (95% CI=42%‒75%) for childhood absence epilepsy but the sensitivity was only 17% (20/115 children identified). For juvenile myoclonic epilepsy the highest PPV was 68% (95% CI=62%‒74%) using the code G40.3F plus antiseizure prescription and age at epilepsy code registration after age 8 years, with sensitivity of 85% (164/192 children identified). For generalized tonic-clonic seizures alone the highest PPV was 31% (95% CI=15%‒51%) using G40.3G during 2006– 2019 plus antiseizure prescription and age at code registration after age 5 years.Conclusion: The Danish National Patient Register and the Danish Prescription Database are not suitable for identifying children with IGE subtypes, except for juvenile myoclonic epilepsy which can be identified with caution.Keywords: idiopathic generalized epilepsy, register, ICD-10, validation, epilepsy
