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.


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. Attaining these goals in developing countries, where approximately 80% of people with epilepsy (PwE) live [1], presents even greater challenges. The prevalence of epilepsy in sub-Saharan Africa and Latin America is particularly high; 15.0 and 17.8 per 1,000 people, respectively, compared with 6 per 1,000 in Asia and lower to 8 per 1,000 in Europe and North America [2]. The first, and to our knowledge, only epidemiological data on epilepsy from the Democratic Republic of Congo (DRC) were published in 1970 [3]. Of 4,400 people seen at the Neurology Department of the University Hospital of Lovanium in Kinshasa, 865 were identified as having epilepsy (19.7%). A preliminary analysis of 300 patients demonstrated that more than half experienced generalised convulsions. The same team published data on 1,356 consultations at the paediatric neurology department in the period between January 1975 and October 1976 with a total of 310 convulsions observed in children up to 6 years of age [4].
Lubumbashi is the capital of the southern province of Katanga, and with a population of over 1.5 million, it is the second most important city in the DRC, after the capital, Kinshasa. It is the major commercial and industrial hub of the country, given it rich mineral resources. In 2007, the Centre Neuro-Psychiatrique Joseph Guislain (CNPJG) was established in the city by the Brothers of Charity (Fracarita Belgium). The charity is primarily active in the fields of mental health, care for people with a disability and education and training in 32 countries worldwide. Since 2010, healthcare workers at CNPJG have been specifically focusing on epilepsy, not only in treating patients with the conditions, but also raising awareness through educational programmes. In this epidemiological study we sought to document several elements; the number of patients presenting to the neuropsychiatric clinic of brothers of charity with epilepsy and their characteristics, potential risk and aetiological factors for epilepsy, delay to diagnosis and access to anti-epileptic treatment.

Results
During the 12-month observation period, 3,540 patients presented at the CNPJG with different neuro-psychiatric conditions of whom 423 (11.9%) were identified as having epilepsy; 239 (56.4%) were male and 184 (43.6%) female. Of the person living with epilepsy, 179 were included in the survey after they provided informed consent and completed an EEG investigation. The mean age of the study population was 21.5 years, range 6 -106 years ( Table 1).  Table 2). Epilepsy was observed more frequently among first-born children (57%), than in second-and third-born (14.0% and 16.2%, respectively). Other factors that could have potentially contributed to the development of epilepsy were obstetric and perinatal factors in 15.1% of patients, followed by central nervous system infections during infancy (8.4%). Of interest is the consumption of alcohol or recreational drugs such as cannabis accounting for 10.6%. Over 60% of patients could not recall a precipitating factor for their condition. When asked to describe their condition, 12.8% provided a good description -i.e., kifwafwa (tonic-clonic seizures), ndeke (crisis with foam to the lips), musanfu (febrile convulsions in children).

Whereas 88% lived in
In contrast, 55.3% of PwE considered their condition to be of spiritual and/or religious origin. An additional 6.7% of patients confused malaria with epilepsy. One out of four patients (25.1%) could not provide any description. Generalised tonic-clonic seizures were the most frequently reported type of seizure (57.5%), while the other clinical presentations of epilepsy all remained below 10%.
The EEG was taken within 72 hours after the last seizure, with 66.5% showing abnormalities ( Table 3

Discussion
Epilepsy is the most common neurological condition worldwide, however, prevalence and incidence data are often lacking in lowincome countries. Only historical epidemiological data are available for epilepsy in the DRC [3,4]. Results from our study at the CNPJG in Lubumbashi, established the prevalence of epilepsy among a population of patients with neurological disorders as 11.9%. This result should not be confounded with prevalence data in the general population in Sub-Saharan Africa, which varies significantly from study to study, ranging from 2.91 to 14 per 1000 [5][6][7][8]. Such The development of epilepsy is strongly associated with adverse perinatal and obstetric factors. In our study, 15% of participants reported an abnormal delivery or prematurity, in line with published data [5,13]. Perinatal and obstetric problems are important risk factors for developing epilepsy in low-income countries. Maternal hygiene and nutrition, obstetric practices and location of delivery (home vs healthcare center) are among the important factors influencing the outcome of the delivery [2]. It is of interest to note that epilepsy was observed more frequently in first-born children.
This high prevalence of epilepsy among the firstborn could be explained by the lack of experience of young mothers in recognition of the evolution of a parturition leading to births at home or in vehicles during the transfer to a maternity in precarious conditions and thus traumatic for the newborn with probably head injuries as a cause for epilepsy. Other studies have also reported respectively 7.1% and 20% head injuries as cause of epilepsy [13,14]. Alcohol consumption as cause of epilepsy was lowers (9%) than reported in literature, for example 12% reported in southeast Nigeria [14]. In our study, we report an epilepsy treatment gap of at least 67% in the city of Lubumbashi, based on our observation that only 33% of participants had received AEDs at the time of their first presentation at the CNPJG. Furthermore, the dosage, dosing schedule and indication of the AEDs were not always appropriate and adjustments were needed. The 67% treatment and access gap is in line with the reported 75% of PwE living in low-income countries being untreated [15][16][17]. Over 30% of study participants had at some stage been seen by traditional healers and had received traditional herbal medicine (i.e., roots, barks and leaves of trees and plants) or were treated with rites and prayers. This is consistent with findings from Northern Tanzania [18] and Cameroon [19]. In Cameroon, it was documented that PwE consider healers to have a good understanding of epilepsy and their attitude toward PwE is deemed satisfactory. Participants' religion and province of origin did not influence their decision to receive traditional treatment. In terms of religion, protestants and pentecostalists were more likely than catholics to use traditional medicine (23.5% and 12.7%, respectively), while 21.1% of participants from Katanga compared with 11.7% from Kasai used traditional medicine but there was no statistically significant difference( P=0,08 and 0,126). In our study, an average gap of 15 months between the first visit to the traditional healer and the neurologist at the CNPJG was found. Of the 179 participants in our study, 82% achieved good seizure control. The majority of treated patients (79.9%) continued their AED therapy. Reasons for discontinuation included poverty, negligence, spiritual or religious belief and adverse events. The most frequently reported AED-related adverse events were somnolence and slowing of motor and cognitive function. Further research is required to evaluate the use of AED treatment in Africa, including potential metabolic interactions with concurrent infectious diseases or drug. This could potentially have a negative impact on therapeutic efficacy of the drugs with direct consequences for public health [20,21].  Table 1: Demographic characteristics of study participants      Others, e.g., vertigo, fatigue, weight gain