Newton Fund - Precision management (PM) of Epilepsy in South African children

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Epilepsy is one of the most common neurological disorders worldwide with over 500,000 suffers in South Africa (SA) alone. The prevalence of epilepsy in low to middle income countries is substantially greater than in more resourced countries - 81.7 compared with 45.0 per 100,000 and affects a younger population.Precision medicine aims to optimise therapeutic benefit to patients by understanding and responding to individual circumstances. To date, such approaches have been considered to be too expensive to roll out in emerging countries. There are no studies published on technology-based monitoring in epilepsy in Africa and very little on the genetic aetiology or pharmacogenetics of epilepsy particularly in Sub-Saharan Africa.mHealth provides the opportunity for interaction between patients, caregivers and health care professionals empower people to be partners in their or their children's health. It allows for active engagement and data that can be collated could contribute to better understanding and partnerships in a way that take public views into account. Medication adherence is a major reason for poor control in epilepsy and a challenge for caregiver's is remembering to give frequent medications that often change in dose and timing. An easy and reliable reminder is likely to improve adherence.The Aparito app allows for a visual representation of the health of affected individuals that can be shared with doctors by caregivers in real-time. The nature of the 2 way interaction could allow for health promotion messages to be shared with caregivers in their own time on a regular basis. Ill health carries a significant economic burden on families whose lives are already stressed by poverty and this initiative can allow for a better understanding of how the burden of care may be eased by allowing recording of daily realities in real time.Medical technologies have great potential but must be affordable, feasible and culturally acceptable. This study aims to interrogate the challenges and perspectives of South Africans on the use of such initiatives such as this so that implementation of any such initiative takes into account the community's view and needs.Remote monitoring and communication using cell phone technology allows for collaboration between different health care sectors and the families in an objective and reliable way if data on the affected child can be readily collated and is easily accessible to all involved in their care.This Newton Fund project is working towards the United Nations Sustainable Development Goals 3 - Good Health and Wellbeing; Ensuring healthy lives and promote well-being for all at all ages.