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

癫痫是世界上最常见的神经系统疾病之一，仅在南非就有50多万患者。中低收入国家的癫痫患病率大大高于资源较丰富的国家，为81.7例，而资源较丰富的国家为45.0例。精准医学旨在通过理解和应对个体情况来优化患者的治疗效益。迄今为止，这些方法被认为过于昂贵，无法在新兴国家推广。在非洲没有发表关于以技术为基础的癫痫监测的研究，特别是在撒哈拉以南非洲，关于癫痫的遗传病因学或药物遗传学的研究也很少。移动医疗为患者、护理人员和卫生保健专业人员之间的互动提供了机会，使人们能够成为自己或子女健康的合作伙伴。它允许积极参与，可以整理的数据可以有助于以考虑公众意见的方式更好地理解和建立伙伴关系。药物依从性是癫痫控制不佳的一个主要原因，对护理人员来说，一个挑战是记住经常给药，经常改变剂量和时间。一个简单可靠的提醒可能会提高依从性。Aparito应用程序允许受影响个人的健康状况的可视化表示，护理人员可以实时与医生分享。双向互动的本质可以让健康促进信息在护理人员自己的时间定期分享。健康状况不佳给生活已经受到贫困压力的家庭带来了重大的经济负担，这一举措可以使人们更好地了解如何通过实时记录日常现实情况来减轻护理负担。医疗技术具有巨大潜力，但必须是负担得起的、可行的和文化上可接受的。这项研究的目的是询问南非人对使用这类倡议的挑战和看法，以便在执行任何此类倡议时考虑到社区的观点和需要。使用手机技术进行远程监测和通信，如果有关受影响儿童的数据易于整理，并且所有参与照顾儿童的人都能轻松获得，就可以实现不同保健部门和家庭之间客观可靠的协作。这个牛顿基金项目正在努力实现联合国可持续发展目标3——良好健康和福祉；确保健康的生活方式，促进各年龄段所有人的福祉。

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.