Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients. (August 2021)

• Record Type: Journal Article
• Authors: Freedman, Daniel A.; Grinspan, Zachary; Glynn, Peter; Mittlesteadt, Jackson; Dawes, Alex; Patel, Anup D.
• Is Part Of: Child neurology open. Volume 8(2021)
• Publication Date: 2021-08
• Subjects: refractory -- epilepsy -- pediatric -- children -- seizures; Pediatric neurology -- Periodicals; 618.928005
• DOI: 10.1177/2329048X211037806
• Languages: English
• ISSNs: 2329-048X

Abstract

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.