Evolution in the use of epilepsy surgery in tuberous sclerosis complex. Analysis of the Pediatric Health Information System over two decades.

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.