Instruments for investigation of epilepsy in low and middle - income countries: a systematic review
Résumé
Objectives: Epilepsy affects more than 50 million people over the world, including 80% of people with epilepsy 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, the “Questionnaire for investigation of epilepsy in tropical countries” (IENT questionnaire) was developed to promote epidemiological surveys on epilepsy using standard methodology. Nowadays, an update of the tool according to current knowledge and guidelines on epilepsy is need. Firstly, this study aims to identify instruments that have been developed and validated in low- and middle-income countries for investigation on epilepsy.
Methods: A systematic review was conducted through international and local bibliographic databases. Tools’ validation studies carried out between 1980 and 2019 in LMICs, then in English, French, Spanish or Portuguese language were included. Articles were selected according to PRISMA guidelines. Data related to characteristics of the tools and their validation processes were collected.
Results: Among the 1351 articles identified, 78 of them corresponding to 76 tools were included. Higher number of tools was developed and validated in China (n=16) and Brazil (n=14). In opposite, there have been few in Africa. Main instruments were scales to assess quality of life (n=28) or comorbidities (n=13) in people with epilepsy and screening tools. Tools’ validation processes were heterogeneous. However, cultural adaptation for a same tool has often been achieved.
Conclusion: Comparison between the IENT questionnaire and other tools developed and validated in LMICs allowed to identify new topics and potential tools to include in the updated version of the standard questionnaire to promote comparisons between epidemiological studies in LMICs on several epilepsy’s topics.