Epilepsy research in Africa: A scoping review by the ILAE Pediatric Commission Research Advocacy Task Force

Abstract

Objective Despite the high prevalence of epilepsy in Africa, evaluation of epilepsy research trends on the continent is lacking. Without establishing effective research, improvement in care for people with epilepsy cannot be effectively strategized or targeted. Methods A scoping review of the peer‐reviewed literature on epilepsy from Africa (1989–2019) was conducted. The aim was to understand from this what areas are well researched versus underresearched based on published epilepsy topics. Results A total of 1227 publications were identified and assessed. A significant increase in publications occurred over the 30 years assessed. African author leadership was evident in most reports. Nine countries had >50 publications identified; the remaining 45 countries had <50 or no publications. Research studies were typically of lower quality (case series and observational studies). Research themes were more focused on clinical epilepsy (descriptive observational studies) and social aspects (qualitative surveys). However, there were a number of unique and strong themes, specifically for neurocysticercosis and nodding syndrome, where strong research collaborations were evident, basic science understandings were explored, and interventional models were established. Significance Despite Africa being the continent with the most countries, it is lacking in the quantity, quality, and for some areas, relevance of research on epilepsy. Targeted approaches are needed to upskill the strength of research undertaken with more basic science, interventional, and randomized controlled studies. Themes of research need to promote those with unique African content but also to align with current international research areas that have impact on care delivery, such as epilepsy surgery and epilepsy genetics. For this to be possible, it is important to strengthen research hubs with collaborations that empower Africa to own its epilepsy research journey.

Dravet syndrome: A systematic literature review of the illness burden

“…Indeed, many of the outcomes, especially mortality, costs and resources (including available ASMs), are likely to be vastly different to those from high‐income countries, with higher mortality amid constrained resources having been reported for epilepsy in general 117–119 . More research and innovative solutions are needed to improve patient outcomes in such regions 120–123 …”

“…[117][118][119] More research and innovative solutions are needed to improve patient outcomes in such regions. [120][121][122][123] The SLR was performed according to the PRISMA guidelines with search terms developed by an experienced information scientist, and there were no limits on language or date (except for abstracts). However, by focusing the search on Dravet syndrome/Severe Myoclonic Epilepsy of Infancy (SMEI) we may have missed some publications that included DS patients under the umbrella of drug-resistant epilepsy (and related terms), although we tried to mitigate this by hand-searching reference lists of other reviews/SLRs.…”

Unlocking the hidden burden of epilepsy in Africa: Understanding the challenges and harnessing opportunities for improved care

“…3 Unfortunately, despite the considerable burden of this disease in Africa, patient care and support are inadequate. 4 The challenges associated with epilepsy management in Africa include limited access to diagnostic tools and treatments, inadequate care coordination, and a lack of disease awareness and understanding. [5][6][7] Given that Africa is home to culturally and socioeconomically diverse populations, these unique challenges must be addressed when developing interventions for epilepsy care.…”

“…The World Health Organization (WHO) estimates that approximately 25 million people in Africa have epilepsy, and 80% live in low‐ and middle‐income countries 3 . Unfortunately, despite the considerable burden of this disease in Africa, patient care and support are inadequate 4 …”

“… 3 Unfortunately, despite the considerable burden of this disease in Africa, patient care and support are inadequate. 4 …”