Clinical adult outcome 11–30 years after pediatric epilepsy surgery: Complications and other surgical adverse events, seizure control, and cure of epilepsy

Abstract Objective Pediatric epilepsy surgery promises seizure freedom or even cure of epilepsy. We evaluated the long‐term (≥10 years) adult clinical outcome including surgery‐related adverse events and complications, which are generally underreported. Methods A monocentric, single‐arm, questionnaire study in now adult patients who underwent epilepsy surgery during childhood. A novel ad hoc parental/patient questionnaire, which addressed diverse outcome domains was applied. Results From a total of 353 eligible patients, 203 could be contacted (3 patients died of causes unknown) and 101 (50%) returned appropriately filled‐in surveys. No evidence for a survey‐response bias was found. The rate of surgical complications according to the patient records was 9%. As regards the survey, half of the parents/patients reported surgical adverse events (expected and unexpected issues) and one‐third reported permanent aversive sequels. Two‐thirds of the patients were seizure‐free during the last year before follow‐up; 63% were Engel class 1A; favorable seizure outcomes (including auras only) were obtained in 73%; and 54% were seizure‐free and off antiseizure medicine (ASM), that is, cured of epilepsy. In non–seizure‐free patients, seizure relapse occurred at any time during the follow‐up interval but 87% of those with a seizure‐free first postoperative year were seizure‐free at follow‐up. One patient experienced a seizure relapse during the ASM withdrawal trial but became seizure‐free again with ASMs. Eleven patients reported an increased number of ASMs as compared to the time before surgery. Earlier focal surgery did not affect the long‐term clinical outcome. Significance Pediatric epilepsy surgery was capable of curing epilepsy in about one‐half of the children and to significantly control seizures in about three‐fourths. Long‐term success of focal surgery did not depend on age at surgery or duration of epilepsy. Surgical adverse events including complications may be underreported and must be assessed more thoroughly.