A small yet substantial subset of patients with newly diagnosed epilepsy go without appropriate treatment approximately 3 years after diagnosis, and this gap in treatment may be increasing the risk for medical events and hospitalization in these patients. This is according to a retrospective study published in Neurology.

Commercial and supplemental Medicare databases from 2010 through 2015 were used to obtain claims-based data of patients with epilepsy retrospectively. The researchers also included PharMetrics Plus Database linked to Longitudinal Prescription Database claims database data from 2009 through 2014 for the validation study. Data were included for patients who met criteria for newly diagnosed epilepsy and had continuous medical and pharmacy enrollment without epilepsy/seizure diagnosis or treatment with an antiepileptic drug (AED) during the baseline period. The primary outcomes were the proportion of untreated patients (ie, no prescription for an AED) at approximately 3 years of follow-up. Additional outcomes included medical events and healthcare resource utilization during this follow-up period.

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A total of 59,970 patients from both databases met the inclusion criteria for newly diagnosed epilepsy. The percentage of patients with epilepsy who remained untreated with any AED was 51.4% (95% CI, 51.0%-51.8%) at 6 months, 46.0% (95% CI, 45.6%-46.4%) at 1 year, and 36.7% (95% CI, 36.1%-37.3%) at 3 years. A similar proportion of patients in the validation study (N=30,890) were untreated at up to 3 years following diagnosis (31.8%). Overall, patients who remained untreated at 3 years had a higher rate of medical events (adjusted incidence rate ratio [aIRR], 1.2; 95% CI, 1.2-1.3), hospitalizations (aIRR, 2.3; 95% CI, 2.2-2.3), and emergency department visits (aIRR, 2.8; 95% CI, 2.7-2.9).

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Limitations of the study include its retrospective nature, the lack of information on whether patients filled AED prescriptions, the inclusion of only patients who had medical and prescription insurance coverage, and the lack of data on treatment adherence or reasons for gaps in treatment.

“Our study strongly suggests that the ‘treatment gap’ in epilepsy is not a phenomenon confined to developing countries or to underserved populations,” the researchers wrote, “but encompasses many persons with a valid diagnosis of epilepsy and who should have access to AEDs, but for various reasons may not be obtaining them.”


Kalilani L, Faught E, Kim H, et al. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology. 2019;92(19):e2197-e2208.