Investigating epilepsy in Africa: 10 years of data collection using a standardized questionnaire in 2,269 peoples with epilepsy

Abstract

SUMMARYPurpose: The need for comparable epidemiologic data on epilepsy from various locations in tropical areas has led in 1994 to the creation of a questionnaire able to standardize information. The Limoges' questionnaire was created to collect information independently of the objectives of each survey performed, and since it has been employed in various continents under tropics latitude. In Africa between 1994 and 2004, 13 epidemiologic surveys in 12 countries were performed by this means. Authors of these works were solicited to communicate their raw data on people with epilepsy (PWE). Methods: Information collected was aggregated in a database upon which operations of data management were processed. Undernutrition status was determined using an anthropologic method, according World Health Organization (WHO) recommendations. Factors associated with undernutrition and absence of treatment by phenobarbitone were searched for by using multivariate logistic regression. Key Findings: Information about 2,269 PWE was collected. Mean treatment gap and undernutrition were determined, respectively, to be 30.6% [95% confidence interval (95% CI) 28.7-32.6] and 25.4% (95% CI 22.7-28.2). Factors significantly associated with undernutrition and not being treated with phenobarbitone were determined. Significance: Despite the different purposes of each study, we were able to pool information in order to characterize and study particular traits of PWE in Africa. Some items of particular importance should be collected systematically and will be highlighted in a newer version of this questionnaire. Because many surveys were undertaken using this tool in tropical areas, a backward compatibility should be ensured.

Help seeking and suicidality among people with epilepsy in a rural low income country setting: cross-sectional survey

“…Therefore, besides the need to expand local access to low cost anti-epileptic drugs, belief systems about the causes of epilepsy, comorbid psychiatric disorders and the acceptability of biomedical treatments may be important in understanding the factors playing in treatment adherence. This study has also demonstrated the presence of widespread use of religious treatment facilities among the study participants who are treated with or without the addition of evidence based medicine, in keeping with other studies [17, 20]. The attribution of causes of epilepsy to supernatural forces might have also influenced the preference for religious help seeking in participants [33].…”

“…The treatment gap identified for epilepsy in this rural district of Ethiopia is comparable to the result of a multi-country African study [17], but lower than the findings in studies from Ethiopia [46] and other low income countries [16, 19, 47]. A number of possible causes of treatment gap have been found in the Sub-Saharan African countries including inconsistent availability and unaffordability of anti-epileptic medications, stigma, inadequate skilled health professionals, limited access to health institution, medication side effects and toxicity [16, 47].…”

“…In a general population and hospital-based survey conducted in 12 African countries, a lifetime treatment gap of 30.6% was identified, with 11.7% of the respondents using traditional healing exclusively [17]. In a rural African community, the mean duration of epilepsy before receiving evidence-based biomedical treatment was six and half years [18].…”

Addressing the treatment gap and societal impact of epilepsy in Rwanda — Results of a survey conducted in 2005 and subsequent actions

“…For detection of epilepsy, respondents who answered ‘yes’ to any of the following during screening, “Do you ever have fits, involuntary movement, rigidity, or loss of consciousness?”, were examined in more detail by a physiotherapist using the diagnostic section of the questionnaire. For the current survey, we used the validated PAANS epilepsy screening questionnaire [4], and the survey investigators underwent specific training in epilepsy. The questionnaire was overseen by the project researcher and representatives of the Ministry of Health and WHO.…”

“…The survey on the prevalence of epilepsy was conducted using a validated questionnaire for countries in tropical and subtropical areas developed by the Institute of Epidemiology and Tropical Neurology of Limoges, the Pan African Association of Neurological Sciences (PAANS), and the International League Against Epilepsy (ILAE) [4]. Briefly, the questionnaire consists of nine modules or chapters and is conducted in two stages.…”