Abstracts

Rationale: The prevalence of intractable epilepsy in the developing world is 10 times greater than in the developed world. In East Africa, the prevalence is estimated to be 20 in 1,000. Surgery for intractable temporal lobe epilepsy (iTLE) has been shown to be more effective than solely medication and may be the only option for a cure in more than 30% of people with iTLE. In addition to morbidity associated with recurrent seizures, people with epilepsy (PWE) face discrimination and stigmatization that is most severe in the developing world. A pilot study previously conducted at Cure Children's Hospital of Uganda (CCHU) evaluated 49 individuals with intractable epilepsy, 10 patients with iTLE underwent epilepsy surgery (Epilepsia. 50:1256-1261, 2009). Methods: The current study used validated inventories to evaluate various aspects of life: seizure activity, quality of life (QOL), perceived and felt stigma, and self-esteem. Participants were from the original pilot study. Included were both surgical iTLE patients and non-surgical patients with intractable complex partial type epilepsy of (10 and 9 subjects, respectively). To gain a broader view of the PWE's environment, stigmatization and self-esteem inventories were completed by a parent or caregiver. Data were analyzed using Pearson Correlation and Student t-test. Results: Seventy percent of patients that underwent surgical resection were seizure free at approximately 8 years after surgery. One individual who had 3 seizures at 2 years was seizure free at this long term follow up. Not surprisingly, the QOLIE-31 revealed a significant improvement in QOL for patients in the surgical treatment group compared to patients that were not surgical candidates (p=0.002). There was a significant difference in stigmatization, based on the Austin child/patient survey, between the seizure free patients and those that continue to have seizures (p=0.02). The Austin parent/proxy survey revealed both a significant difference in stigmatization between seizure free patients and those that still have seizures (p=0.04) as well as an interesting pattern of stigmatization based on patient's region of origin. Conclusions: Accepting the limitations of the interpretation based on sample size, the information gleaned from the data and experiences that patients shared while at Cure Uganda, the pilot program was a success. The data suggests that surgery for temporal lobe epilepsy in the developing world provides an opportunity to significantly reduce stigmatization that arises from intractable epilepsy.