Living with epilepsy in Lubumbashi (Democratic Republic of Congo): epidemiology, risk factors and treatment gap

Introduction: Epilepsy is the most common of serious neurological disorders, yet despite considerable efforts, good access to medication, appropriate social and societal acceptance and acceptable quality of life (QoL) are difficult to achieve especially in developing countries. It is estimated that over 500,000 people suffer from epilepsy in the DRC. There is no report, in our knowledge on the epilepsy in Lubumbashi. Methods: A descriptive study was undertaken in individuals with a clinical diagnosis of epilepsy who presented at the CNPJG outpatient clinic in Lubumbashi over a 12 months period. A 64-item questionnaire was used to collect information from the patients. Case records were reviewed and relevant demographic, social, professional, medical history, medical condition data were extracted. Results: Among 3,540 patients who presented to a neuropsychiatric clinic run by the Fracarita charity over a 1-year period, 423 (11.9%) were identified as having epilepsy, and 179 were subsequently included in the survey after they (or their parent/guardian) provided informed consent and completed an EEG investigation. Data were collected using a standardized, 64-item questionnaire. Epilepsy had negative impact on the lives of individuals with the condition; 40.8% had either no education or had completed primary education only, 38.0% were unemployed and the majority (64.6%; n=113) were unmarried or divorced. Family history of epilepsy (first or second degree) was present in 23.5% of cases. Other reported factors that could potentially precipitate epilepsy included obstetric and perinatal factors (15.1%) and central nervous system infections during infancy (8.4%). Consumption of alcohol or recreational drugs accounted for 10.6%. The treatment gap was above 67% and the delay between first seizure and first consultation was 15 months. When asked to describe their condition, or its cause, 55.3% of participants (or their families) considered epilepsy to be of spiritual/religious origin, while 25.1% had almost no insight and could not provide any description. Conclusion: This first epidemiological study shows a high prevalence of epilepsy among patients presenting to the clinic in Lubumbashi, DRC, and reveals a significant treatment gap.