Evolution in the use of epilepsy surgery in tuberous sclerosis complex. Analysis of the Pediatric Health Information System over two decades.
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PURPOSE: To describe the utilization of epilepsy surgery in children with tuberous sclerosis complex (TSC), its evolution over the years, and the factors that predict epilepsy surgery use. METHODS: Retrospective descriptive study using the Pediatric Health Information System (PHIS) database between 2004 and 2024. Our main outcome was the proportion of children with TSC and drug-resistant epilepsy who received epilepsy surgery. We adjusted for potential confounders with a generalized estimating equation. RESULTS: 2769 children had TSC and drug-resistant epilepsy (53 % males, median (p25-p75) age at first diagnosis of drug-resistant epilepsy: 5.2 (2.2-11.1) years). 802 (29.0 %) children underwent a total of 955 epilepsy surgeries. 307 (32.1 %) children had lobectomy, 599 (62.7 %) children had other excision of brain tissue, 61 (6.4 %) children had laser interstitial thermal therapy, 24 (2.5 %) children had intracranial neuromodulation, and 13 (1.4 %) children had hemispherectomy. Although the absolute number of epilepsy surgeries increased among children with long follow-up, the number of epilepsy surgeries per person-year decreased over the years. Although the cost during the epilepsy surgery admission is high [median (p25-p75): $72,415 ($44,734-$116,353), the healthcare cost per person-year after epilepsy surgery substantially decreased compared to prior to surgery [$9550 ($3408-$22,134) versus $28,268 ($15,936-$46,851)]. Black race, American Indian race, and public insurance were major factors which decreased the probability of receiving epilepsy surgery. CONCLUSION: The proportion of children with TSC and drug-resistant epilepsy who receive epilepsy surgery is low, especially in marginalized populations, and has not increased over the years. Healthcare resource utilization may decrease after epilepsy surgery.