Abstracts

Rationale: Up to 2004, epidemiological data on epilepsy in Rwanda were sparse; however, in the neuropsychiatric center of Fracarita in Ndera (Kigali) it was observed that up to 40% of patients consulted for epilepsy. This study, supported by the Rwandan Ministry of Health, was subsequently conducted to determine the prevalence of epilepsy and its sociocultural perception in Rwanda. It also assessed epilepsy-related knowledge and practices of healthcare professionals (HCPs).Methods: A cross-sectional, nationally representative survey was set up in five different regions. After cluster sampling, 10 sectors each with approximately 111 patients were selected. The survey, conducted by trained investigators, consisted of three parts; part 1 to document epilepsy prevalence, and parts 2 and 3 to document the sociocultural perception of epilepsy and HCP practices. The latter two parts were adapted to the Rwandan sociocultural context following pre-testing and validation. Survey development, questionnaire validation and investigator training were done in collaboration with the World Health Organization, the Institute of Neurological Epidemiology and Tropical Neurology of Limoges, France, the Pan African Association of Neurological Sciences, University Cheikh Anta Diop, Dakar, Senegal, and the International League against Epilepsy.Results: Between 19 and 25 September 2005, 1137 individuals (62% from rural areas) were interviewed. The prevalence of epilepsy was estimated to be 49 per 1000 people. Onset of epilepsy before the age of 2 years occurred in 32% of cases. Family history of epilepsy, head trauma, and premature delivery were reported in 53%, 50%, and 68% of cases, respectively. 43% of patients did not receive any medical treatment for epilepsy. Responses from the general population (N=1127) revealed the stigma associated with the disease: people with epilepsy were not entitled to schooling (according to 66%), to work (72%), the use of public places (69%), or to marriage (66%). Furthermore, 50% believed epilepsy was untreatable and 40% thought it was transmissible. Of the 29 HCPs interviewed, the majority knew the definition of epilepsy and status epilepticus, as well as basic treatment options and side effects. However, 90% believed treatment was only necessary in the first week after a seizure.Conclusions: Based on these results, an epilepsy prevalence of 49 per 1000 people in Rwanda ranked amongst the highest in sub-Saharan Africa; however, this may be lower if diagnosis is objectively confirmed via electroencephalogram. Living with epilepsy was heavily associated with stigma and a significant treatment gap (43%) was identified. Following this study, actions have been taken by the Rwandan government, the Rwandan League against Epilepsy, and several non-governmental organizations to increase awareness and to close the treatment gap.