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Evaluation of a community-based comprehensive epilepsy prevention and treatment programme in onchocerciasis endemic villages in South Sudan
Research into epilepsy prevention and treatment in South Sudan
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Principal Investigator: Richard Lako, Ministry of Health, Government of South Sudan & Jane Carter, Amref Health Africa
Research Snapshot: Preventing devastating 'river epilepsy'
This study in South Sudan finds that a multi-pronged approach to tackling onchocerciasis, a neglected tropical disease, could also have a significant impact on epilepsy- including the devastating nodding syndrome.
The study aimed to evaluate a community-based programme to protect children from developing epilepsy and improve the treatment and care of persons with epilepsy in onchocerciasis (‘river blindness’) endemic regions in South Sudan. It hoped to:
fill a significant evidence gap concerning the management of people with epilepsy in remote and conflict affected settings, a highly neglected and stigmatised condition in lower income settings
improve knowledge of community-based intervention methods, which can apply to other remote or humanitarian contexts
improve knowledge concerning the association between onchocerciasis-related epilepsy and nodding syndrome.
The project changed the existing community directed annual mass distribution of ivermectin, to 6 monthly (bi-annual) distribution and vector control, in Maridi, one of the 3 study sites. The impact was measured over the life of the project in terms of transmission of onchocerciasis and its effect on the incidence of nodding syndrome and epilepsy. Parallel studies used the same community structures to identify and manage the many cases of epilepsy, and the impact on persons with epilepsy and their families, as well as school attendance.
Richard Lako
Principal Investigator, Government of South Sudan
Nodding syndrome is another mystery for the people of South Sudan, the aetiology remains unknown, the magnitude of the problem and the treatment protocol are yet to be established and developed respectively but on other hand the relatives of the affected children cannot afford waiting for psychosocial support.
Jane Carter
Principal Investigator, Amref Health Africa
This study will provide the evidence needed to halt the epidemic of epilepsy that is causing such misery to the people of South Sudan as well as affecting the economic growth of the country
Robert Colebunders
Professor of Infectious Diseases, University of Antwerp
With this project we will identify new strategies to sustainably improve the prevention and management of epilepsy in onchocerciasis endemic regions.
What were the key findings?
There is a high prevalence of epilepsy in the study sites (over 4%). OAE (river epilepsy) is one of the main causes of mortality in areas of high onchocerciasis transmission. Nearly all people with OAE die before the age of 30 years.
A high prevalence of OAE is linked with severe socio-economic consequences and poverty. In Mundri, 4.8% of persons with epilepsy were severely disabled. Children with epilepsy drop out or are excluded from school.
In Maridi, the interventions resulted in an 89.2% reduction in epilepsy incidence. Blackfly biting rates reduced by more than 97%. The improvement of epilepsy treatment and care resulted in over 90% of people receiving treatment reporting reduced seizures and increased quality of life.
However, while coverage of ivermectin in Maridi increased, the 80% coverage required for onchocerciasis elimination was not achieved.
What does this mean for policymakers and practitioners?
CDTI coverage and distribution frequency should be increased wherever OAE is prevalent. Efforts should prioritise children aged 5−15 years. However, it is also clear that CDTI alone is not enough to eradicate onchocerciasis. A multi-pronged approach is needed. Involving local community leaders and community drug distributors (CDDs) and ensuring adequate supervision of CDDs could enhance CDTI distribution effectiveness.
Treatment, care provision and awareness of epilepsy in OAE affected areas must be stepped up, with attention to improving access to education for children with epilepsy.
OAE- river epilepsy- is preventable. The interventions evaluated in South Sudan could be scaled up. Donors, humanitarian actors and governments must increase global awareness and resource mobilisation to strengthen onchocerciasis elimination and epilepsy treatment in endemic regions and develop a holistic cross-sectional governmental response.
Children in Mvolo playing in the river at a blackfly (the transmitter of onchocerciasis) breeding site
Latest Updates
Blog published
Jun 2023
Jane Carter, Peter Claver and Robert Colebunders discuss the progress in tackling onchocerciasis and nodding syndrome in South Sudan, and the new R2HC project launched in 2023.
View the poster submitted to the European Congress on Tropical Medicine and International Health on the effect of the community-based control programme.
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