Epidemiology of epilepsy in low and middle-income countries: experience of a standardized questionnaire over the past two decades

Abstract

International audienceObjectives: Epilepsy affects more than 50 million people over the world, including 80% of people with epilepsy (PWE) living in low- and middle- income countries (LMICs). Studies with a standardized methodology are required to obtain comparable data on the burden of epilepsy to help implement health policies in order to reduce the treatment gap and improve management of epilepsy. In 2000, following the guidelines of the International League Against Epilepsy (ILAE), the “Questionnaire for investigation of epilepsy in tropical countries” (IENT questionnaire) was developed to promote epidemiological surveys on epilepsy using standard methodology. This study aims to describe the use of the IENT questionnaire over the last two decades.Methods: Studies that used the IENT questionnaire were searched through international and local bibliographic databases, then an online survey was carried out, including a snowball effect. Available original research studies citing use of the tool were included. Characteristics of the studies and populations, general information on the instrument and its use were collected. Mac-Nemar test was used with a significant level at 5%.Results: Eighty-two documents referred to 61 studies which were mostly carried out on the African continent (n=54). These aimed to determine the prevalence (n=31) and associated factors (n=28) of epilepsy in LMICs. Among the 61 studies, 35 of them were population-based, and 32 have included all subjects without selection criteria on age. The IENT questionnaire has been continuously used with 11 to 14 studies every five years. In some cases where the questionnaire alone did not ensure complete data collection, other tools were used concomitantly (n=40).Conclusions: Over the two last decades, the IENT questionnaire has been continuousl