In Tanzania, researchers are training primary healthcare workers to use a smartphone app that diagnoses epilepsy, while also testing whether text message reminders help patients stick to their medication. This matters because epilepsy is far more common in sub-Saharan Africa than in high-income countries, and at least a quarter of cases stem from preventable causes such as birth injuries and parasitic infections like onchocerciasis. Yet many people who have seizures never receive a diagnosis, and stigma often blocks them from employment, relationships, and community life. If the project succeeds, it could shift epilepsy care from overstretched specialists to local clinics, where nurses and community health workers use the app to diagnose patients quickly. Portable EEG machines and a shared data platform would help classify seizure types and guide treatment. A prevention programme targeting infections and peri-natal injury could reduce how many people develop epilepsy in the first place. The team will also work with traditional healers and train local epilepsy champions to reduce stigma, and will share free economic costing templates so other countries can adopt the approach.
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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.
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