Instruments for investigation of epilepsy in low- and middle-income countries: A systematic review

International audienceObjective: Systematic reviews were conducted on the existence of screening tools for epilepsy, quality of life or comorbidities tools, but not specifically in low- and middle-income countries. This study aimed to identify the different tools developed and validated in low- and middle-income countries for the investigation of epilepsy. This to facilitate research in these regions and to identify needs in areas where few instruments are available. Methods: This review was conducted according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. PubMed, Embase, MedLine, Google Scholar, Web of Science, SciELO, Neurology Asia, African Journal of Neurological Sciences and Institute of Epidemiology and Tropical Neurology bibliographic databases were investigated. Articles were included according to the following criteria: (1) to be validation studies on tool for investigating epilepsy, (2) to be conducted in a low- or middle-income country, (3) to be published between 1980 and 2021, and (4) to be written in English, French, Spanish or Portuguese. The characteristics of the tools and validation methods were collected. The frequency of use of the tools was estimated. Results: Ninety-three articles were retained, corresponding to 91 tools from 44 countries. The main tools targeted quality of life (n = 30), comorbidities (n = 19) and screening (n = 13). Instruments were mainly developed and validated in Asia (n = 43), then in Central and South America (n = 24). The IENT (Institute of Epidemiology and Tropical Neurology) questionnaire was developed in several tropical countries (Africa, South East Asia and Latin America). The development and validation methods were heterogeneous from one tool to another and some tools (e.g., QOLIE-31, NDDI-E, PATE, etc.) were culturally adapted. Conclusion: This review identifies geographic specificity regarding the creation, validation and use of tools for investigating epilepsy available in low- and middle-income countries. It will help investigators in the choice of tools in their future epidemiological studies on epilepsy in this context