Title: Epilepsy Pathway Innovation in Africa (EPInA)
Funder: Department of Health and Social Care

Abstract: RESEARCH QUESTIONS: Can the incidence of epilepsy be prevented by reducing infection and peri-natal injury? Can the care of people with epilepsy (PWE) be enhanced through the training of Primary Healthcare workers (PHWs) in innovative technologies? Will increased public awareness and improved understanding of the stigmatisation of epilepsy allow societal change to improve the lives of PWE? Are the above measures cost-effective, sustainable and economically viable? BACKGROUND: Epilepsy is one of the most common serious neurological conditions and is particularly widespread in sub-Saharan Africa (SSA). This high incidence is, in at least a quarter of cases, because of preventable factors, yet many people who may have had seizures are not diagnosed and even fewer receive appropriate treatments. These factors are compounded by enduring social stigma that can make it hard for Africans with epilepsy to obtain employment, form relationships or feel valued. AIMS of Epilepsy Pathway Innovations in Africa (EPInA): PREVENT: reduce the incidence of infection and peri-natal injury in an endemic region in Tanzania and the subsequent risk of epilepsy DIAGNOSE: improve the rate of accurate diagnosis of epilepsy by refining app-based technologies TREATMENT: increase the adherence to medication using text messaging SOCIETAL CHANGE: ensure an enduring, positive change by improving public awareness and reducing the stigma experienced by PWE in SSA. METHODS: Throughout we will work closely with local communities, PWE, carers and NGOs to ensure that the projects are tailored to the individual environments. Specifically, we will: examine if appropriate prevention of peri-natal injury and infection (e.g. onchocerciasis) can reduce the incidence of epilepsy; train PHW to administer a modified version of an epilepsy diagnosis app that we have already tested in Asia and evaluate if this facilitates more rapid diagnosis in both rural and low-income urban settings; upload electroencephalograms (EEG) and the app-based data to a single EPInA platform to help in the diagnosis/sub-classification of epilepsy, thereby guiding treatment; determine quantitatively if text messaging improves adherence to medications; examine the hurdles that have prevented WHO mhGAP guidelines from being more effective and test targeted solutions. TIMELINES Year 1: engage with Ministries of Health (MoHs); establish local steering groups; secure ethics approvals; begin relevant surveys and testing of epilepsy app Years 1-2: introduce WHO mhGAP guidelines; start trial to examine adherence; begin prevention programme Years 2-3: complete assessments of app deployment and trial of SMS messaging; analyse efforts to reduce incidence of epilepsy; test portable EEG. Year 4: complete all economic evaluations; present data to MoHs, publications, presentations IMPACT AND DISSEMINATION The principal impact will be to engage with MoHs in each country and to task-shift the care of PWE in SSA. Adaptable economic costing templates will be developed and shared freely. Engagement with traditional healers and multi-layered patient/NGO involvement, with training of local epilepsy champions/leaders, to drive societal change. In addition to publications and conference presentations, we will ensure full accessibility to our work through social media, creating countrywide WhatsApp groups and dedicated YouTube channels.

Lay abstract: People with epilepsy have episodic attacks known as seizures. Seizures are caused by abnormal electrical activity in the brain and can be convulsive (for example, shaking of arms and legs) or non-convulsive (where movements of the body are less common). Epilepsy has been known about for a long time and was written about by Hippocrates in around 400BC. Hippocrates pointed out that people with epilepsy should receive the same level of medical attention as other conditions, but, then as now, epilepsy remains a hidden disease . Epilepsy affects over 50 million people across the world. 80% of these people live in low to middle income countries. There is a very high rate of epilepsy in Africa where there is much misunderstanding and people having seizures are often thought to be possessed. Consequently, Africans with epilepsy may become very isolated. We do not know that much about epilepsy in Africa, especially for people who have non-convulsive seizures and who live in cities. However, for many of these patients their seizures could be treated and even, in some cases, prevented We have chosen to work in three countries &ndash; Ghana, Kenya and Tanzania. Each of these has been selected for specific reasons: Ghana &ndash; has piloted World Health Organisation guidelines with some benefit. We plan to look at why this has not had more significant impact Kenya &ndash; we already do a lot of work here and there is good support to try new projects. We will, for example, compare care between a rural site and a new urban site to work out how we can improve things in both places Tanzania &ndash; has a very large number of patients with epilepsy. This may be because of an infection from the black fly called onchocerciasis. We are going to see if reducing the rate of onchocerciasis infection can lower the number of people with epilepsy As well as this, we will bring together work across all the countries to better understand the history of epilepsy, investigate why people with epilepsy are so disadvantaged and then set out to improve things develop an app to help healthcare workers to better diagnose epilepsy, especially non-convulsive epilepsy, allowing earlier treatment see if we can use text messaging to increase the number of people who take their medication correctly train many more local people in the care of people with epilepsy develop students and other people who work in healthcare to lead future projects We think that this project can dramatically change the lives of people with epilepsy in sub Saharan Africa. If successful we will use all that we learn to ensure that similar work is carried out across Africa and other low income countries.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL