Research Grant Aims to Bridge Epilepsy Treatment Gap

Fewer than one third of people newly diagnosed with epilepsy in western Kenya return for their follow-up appointment. Inaccurate beliefs about the causes of epilepsy and treatment, stigma, treatment costs, distance from care, life stage and gender all play a role in this massive treatment gap.

Leadership of the BEACON grant

AMPATH investigators Jane von Gaudecker, PhD., RN, associate professor at the Indiana University School of Nursing and Chrispine Owuor Oduor, MBChB, MMed, Moi University/Moi Teaching and Referral Hospital in Kenya, are working to close this gap with a $2.4 million grant from the National Institute of Neurological Disorders and Stroke and the Fogarty International Center.

The grant will fund a five-year (2024-2029) study called “Bridging the Treatment Gap by Expanding Access to Care for People with Epilepsy in Kenya (BEACON).” This is the first NIH-funded global health grant for the Indiana University School of Nursing and the first intervention designed to improve access to epilepsy care and care outcomes in western Kenya.

“Through task-sharing, we will train Kenyan healthcare workers in epilepsy care, which will allow less specialized staff to manage epilepsy treatment tasks effectively and optimize resources to bring epilepsy care closer to home,” said Dr. von Gaudecker, principal investigator on the grant. “We have integrated community and healthcare stakeholders' perspectives to ensure cultural appropriateness and acceptance of BEACON.”

Community Health Promoters in Trans Nzoia County

The study will include participants who are 12 years of age or older, who are residents of Busia or Trans Nzoia County and are newly diagnosed with epilepsy or have a diagnosis of epilepsy but are not adherent to anti-seizure medication treatment. Approximately 500 patients will participate in the study.

The participants in the health facilities within the two counties will be randomly assigned to receive either the current standard of care or the BEACON care model which includes care from clinicians with epilepsy training, task sharing by members of the care team, appointment reminders through the use of an electronic medical records system and more advanced follow-up procedures. The anti-seizure medications used will be the same for both groups. The study will also measure the cost-effectiveness and budget impact of the BEACON interventions compared to the current standard of care.

“If the BEACON intervention shows better retention in care and adherence to medication than usual care, the findings can influence real-world application and healthcare policy decisions to improve the lives of people with epilepsy in Kenya,” said Dr. Oduor, co-principal investigator. “Further, the successful model can be introduced in other parts of Kenya or other resource-limited settings globally.”

Globally, epilepsy is highest in sub-Saharan Africa. In Kenya, a vast majority of people with epilepsy do not receive appropriate treatment. Epilepsy can impact an individual’s quality of life and can lead to seizure-related injuries including burns and fractures. With the appropriate anti-seizure medicine, research shows that up to 70% could become seizure-free.

Community Health Promoters in Busia County

“I am delighted that this project will proceed in Kenya,” said Jo Wilmshurst, M.D., and chair of the African Commission of the International League Against Epilepsy. “Local healthcare providers are keen and ready to take on the challenge of addressing the treatment gap. Projects such as BEACON are a strong push toward empowering these practitioners with the task-sharing skills to meet the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) targets.”

The BEACON team is composed of transdisciplinary researchers including physicians, psychiatrist, behavioral researchers, epileptologists, nurses, pharmacist, biostatistician, health economist, and biomedical informatics. The project will also mentor an early-stage investigator to grow capacity for future epilepsy research.

“This project, led by Dr. von Gaudecker and Dr. Oduor, aligns very well with AMPATH’s overall approach,” said Adrian Gardner, M.D., director of the IU Center for Global Health Equity and executive director of the AMPATH Consortium. “The aim is to work with county governments and Moi Teaching and Referral Hospital to implement and evaluate innovative models for improving community access to high quality care in western Kenya.”