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

癫痫是全世界最常见的神经疾病之一，仅在南非(SA)就有50多万患者。低收入到中等收入国家的癫痫患病率大大高于资源更丰富的国家--81.7%，而每10万人中有45.0人患有癫痫。精确医学旨在通过了解和应对个别情况来优化患者的治疗效益。到目前为止，人们一直认为这种方法成本太高，不适合在新兴国家推广。在非洲，没有发表关于癫痫的技术监测的研究，关于癫痫的遗传病因学或药物遗传学的研究也很少，特别是在撒哈拉以南非洲。它允许积极参与，可以整理的数据可以有助于以考虑到公众意见的方式更好地了解和建立伙伴关系。坚持用药是癫痫控制不佳的一个主要原因，而照顾者面临的一个挑战是记住经常给药，这些药物的剂量和时间往往会改变。一个简单可靠的提醒可能会提高依从性。Aparito应用程序允许直观地显示受影响个人的健康状况，护理人员可以实时与医生分享。双向互动的性质可以允许在照顾者的业余时间定期与他们分享健康促进信息。健康不佳给那些生活已经因贫困而承受压力的家庭带来了巨大的经济负担，这一倡议可以通过允许实时记录日常现实来更好地了解如何减轻护理负担。医疗技术具有巨大的潜力，但必须负担得起、可行并在文化上可接受。这项研究旨在调查南非人在使用这类举措时面临的挑战和观点，以便实施任何此类举措都能考虑到社区的观点和需求。利用手机技术进行远程监测和交流，使不同的医疗保健部门和家庭之间能够以客观可靠的方式进行合作，前提是有关受影响儿童的数据可以很容易地整理出来，并便于参与照料的所有人获得。牛顿基金项目正在努力实现联合国可持续发展目标3--良好的健康和福祉；确保健康的生活，促进所有年龄段的人的福祉。

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.