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Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients
Daniel A Freedman1, Zachary Grinspan2, Peter Glynn3
1Dell Medical School, The University of Texas at Austin, Austin, TX, USA.
Insights
International Classification of Diseases (ICD) codes accurately identify individuals with treatment-resistant epilepsy. This study found high sensitivity and specificity, supporting their use in clinical trials and quality improvement initiatives.
Area of Science:
- Neurology
- Medical Informatics
- Public Health
Background:
- The International Classification of Diseases (ICD) system offers subcodes to denote treatment-resistant epilepsy.
- Accurate identification of treatment-resistant epilepsy is crucial for quality improvement, population health management, and clinical trial recruitment.
- The reliability of these ICD subcodes for identifying treatment-resistant epilepsy has not been clearly established.
Purpose of the Study:
- To evaluate the accuracy of International Classification of Diseases (ICD) codes in identifying individuals with treatment-resistant epilepsy.
- To assess the sensitivity and specificity of ICD codes for this specific patient population.
Main Methods:
- A single-center, cross-sectional study was conducted.
- 344 individuals were analyzed, with approximately half diagnosed with treatment-resistant epilepsy.
- The accuracy of ICD codes was determined by comparing them against a clinical diagnosis.
Main Results:
- The ICD codes demonstrated a sensitivity of 90% (147/164) and a specificity of 86% (155/180) for identifying treatment-resistant epilepsy.
- Identified reasons for miscoding in children included epilepsy surgery, absence epilepsy, care by different providers, and recent visits to a movement disorders clinic.
Conclusions:
- International Classification of Diseases (ICD) codes are a reliable tool for identifying individuals with treatment-resistant epilepsy.
- The high accuracy supports the use of these codes in clinical practice for various healthcare management purposes.
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.
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