Stigma and quality of life at long-term follow-up after surgery for epilepsy in Uganda.

Epilepsy is a worldwide health problem with a 10-fold greater prevalence in the developing world. Commonly, the seizure focus is in the temporal lobe, and seizures in about 30% of people with epilepsy are intractable to medication. For these individuals, surgery for intractable temporal lobe epilepsy (iTLE) is more effective than medication alone and may be the only option for cure. Intractable temporal lobe epilepsy is associated with elevated morbidity and mortality, reduced quality of life (QOL), and associated stigma particularly occurring in the developing world. Individuals with intractable epilepsy who participated in an earlier Uganda pilot study were selected for the current study based on their undergoing previous surgery for iTLE or having comparable seizure type who did not have surgery. At long-term follow-up, 10 who underwent surgery for iTLE in addition to 9 patients with focal dyscognitive type epilepsy who did not have surgery were evaluated in the current study. Tests were administered to look at various outcome parameters: seizure severity, QOL, stigma, and self-esteem. Stigma and self-esteem were additionally evaluated in the parent/caregiver. Seventy-percent of surgical resection patients were seizure-free at 8 years postsurgery. The QOLIE-31 scores were higher in surgical patients. Child/patient and parent/proxy surveys identified lower stigma in seizure-free patients. The results suggest that surgery for iTLE is an effective treatment for epilepsy in the developing world and provides an opportunity to reduce stigma and improve QOL.