Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients

• Main Authors: Daniel A. Freedman DO, Zachary Grinspan MD, MS, Peter Glynn, Jackson Mittlesteadt, Alex Dawes, Anup D. Patel MD
• Format: Article
• Language: English
• Published: SAGE Publishing 2021-08-01
• Series: Child Neurology Open
• Online Access: https://doi.org/10.1177/2329048X211037806

The International Classification of Diseases (ICD) system includes sub codes to indicate that an individual with epilepsy is treatment resistant. These codes would be a valuable tool to identify individuals for quality improvement and population health, as well as for recruitment into clinical trials. However, the accuracy of these codes is unclear. We performed a single center cross sectional study to understand the accuracy of ICD codes for treatment resistant epilepsy. We identified 344 individuals, roughly half with treatment resistant epilepsy The ICD code had a sensitivity of 90% (147 of 164) and specificity of 86% (155 of 180). The miscoding of children with refractory epilepsy was attributed to the following reasons: 5 patients had epilepsy surgery, 4 had absence epilepsy, 4 patients were seen by different providers, and 1 patient was most recently seen in movement disorders clinic. ICD codes accurately identify children with treatment resistant epilepsy.