Searching claims data using the International Classification of Disease (ICD) infantile spasms-specific diagnostic code can accurately identify children with infantile spasms, according to a retrospective cross-sectional study published in the Journal of Child Neurology.

Claims data spanning 4 years were obtained from a pediatric accountable care organization. A total of 4 clinical concepts were incorporated into 5 candidate methods for identifying infantile spasms during this period, including an “Infantile Spasms” claim based on ICD-9 and ICD-10 codes, “EEG” billing code, “Rx” prescription code for infantile spasms, and “Epilepsy” code for patients with an inpatient claim associated with an ICD-9 or ICD-10 epilepsy diagnosis code.

A total of 59,139 pediatric patients between age ≤2 were enrolled in the study. Of these patients, only 32 had a confirmed diagnosis of infantile spasms based on registry and electronic health record data.

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The infantile spasms ICD code method had the best performance for identifying infantile spasms in these patients, providing a sensitivity and specificity of 96.9% and 100%, respectively. The second-best identification method involved a combination of the Infantile Spasms ICD code and EEG Current Procedural Terminology code, featuring a sensitivity of 91% and specificity of 100%.

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Comparatively, the use of the Infantile Spasms ICD code and EEG CPT code in addition to the National Drug Code for the number for medications used to manage infantile spasms yielded a predictive sensitivity of only 56%, whereas the use of the ICD code for infantile spasms in addition to the medication code featured a sensitivity of 59%.

The small number of patients with infantile spasms represents 1 possible limitation of this retrospective review.

High accuracy of the studied algorithms is “essential when using claims to study populations of epilepsy patients and when drawing conclusions about treatments, resource utilization, healthcare costs, and outcomes,” the investigators concluded.


Wang L, Yarosz S, Aghamoosa H, Grinspan Z, Patel AD. Validating an algorithm to identify patients with infantile spasms using medical claims [published online January 1, 2018]. J Child Neurol.  doi:10. 1177/ 0883073818774960