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.