Validation of Pediatric Idiopathic Generalized Epilepsy Diagnoses from the Danish National Patient Register During
Magnus Spangsberg Boesen1, Melita Cacic Hribljan2, Søren Kirchhoff Christensen1
1Department of Neurology, Zealand University Hospital, Roskilde, Region Zealand, Denmark.
Insights
Identifying pediatric epilepsy subtypes using Danish health registers is challenging. Juvenile myoclonic epilepsy can be identified with caution, but other idiopathic generalized epilepsy types require more precise methods.
Area of Science:
- Neurology
- Epidemiology
- Pediatrics
Background:
- Idiopathic generalized epilepsy (IGE) is a significant neurological disorder in children.
- Accurate identification of IGE subtypes is crucial for effective treatment and research.
- Danish health registers offer a potential resource for epidemiological studies of epilepsy.
Purpose of the Study:
- To evaluate the accuracy of using ICD-10 codes and anti-seizure medication data to identify pediatric idiopathic generalized epilepsy (IGE) subtypes.
- To determine the positive predictive values (PPV) and sensitivity of various coding and prescription combinations.
- To assess the suitability of the Danish National Patient Register and Danish Prescription Database for IGE research.
Main Methods:
- Retrospective review of medical records for 969 children with ICD-10 codes for IGE.
- Validation against International League Against Epilepsy criteria by pediatric neurologists.
- Estimation of PPV and sensitivity for different combinations of ICD-10 codes, anti-seizure prescriptions, and age at diagnosis.
Main Results:
- The study validated IGE in 431 children across subtypes: childhood absence epilepsy (CAE), juvenile absence epilepsy (JAE), juvenile myoclonic epilepsy (JME), and generalized tonic-clonic seizures alone.
- Combining ICD-10 codes with medication data yielded a PPV of 59% for CAE and 68% for JME.
- Sensitivity varied significantly, with JME showing the highest sensitivity (85%) using specific codes and age criteria.
Conclusions:
- The Danish National Patient Register and Danish Prescription Database have limitations for identifying most pediatric IGE subtypes.
- Juvenile myoclonic epilepsy can be identified with caution using specific ICD-10 codes, medication data, and age criteria.
- Improved diagnostic criteria or data linkage are needed for accurate identification of other IGE subtypes in pediatric populations.
Objective:
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.
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