Elabbasy Darin, Evers Silvia, Majoie Marian H J M, Schijns Olaf E M G, M'Rabet Laura, van Kranen-Mastenbroek Vivianne H J M, Eekers Daniëlle B P, Houben Ruud, Hendriks Marc, Colon Albert, van Mastrigt Ghislaine A P G
Department of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands
Department of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands.
BMJ Open. 2025 Jul 25;15(7):e095123. doi: 10.1136/bmjopen-2024-095123.
BACKGROUND: Living with epilepsy, especially drug-resistant epilepsy (DRE), imposes several challenges for people diagnosed with the condition. These challenges include the physical and mental implications of epilepsy on both caregivers and patients with epilepsy. For the more than 120 000 individuals living with this neurological disorder in the Netherlands, along with their families, daily activities become hazardous, limited and costly, significantly affecting their health-related quality of life (HRQoL). As data on the burden of epilepsy in the Netherlands are lacking, studies attempting to capture the impact of epilepsy on individuals, caregivers and society are needed to enhance understanding and help address the burden of epileptic seizures. METHODS AND ANALYSIS: The study is part of the AIM@EPILEPSY project. The project aims to develop a planning suite enabling cost-saving, minimally invasive treatment for epilepsy. By surveying 330 people with epilepsy and an anticipated sample of 150-200 informal caregivers across the Netherlands, using standardised questionnaires focusing on associated societal costs and the impact on HRQoL, this bottom-up, prevalence-based prospective study aims to understand the societal burden of DRE in the Netherlands. The data will be collected at 0, 3, 6 and 12 months of follow-up. The study results will describe the economic impact of epilepsy, focusing on cost-of-illness (€) and HRQoL (utilities) in the Netherlands. ETHICS AND DISSEMINATION : The proposed study was approved by the Maastricht University Medical Ethics Review Committee (Approval reference: FHML-REC/2024/067/Amendment/2024_16). The result of the study is planned to be published in a peer-reviewed journal and presented at international and local scientific conferences.
背景:患有癫痫,尤其是耐药性癫痫(DRE),给被诊断出患有这种疾病的人带来了诸多挑战。这些挑战包括癫痫对护理人员和癫痫患者的身心影响。对于荷兰超过120000名患有这种神经系统疾病的人及其家人来说,日常活动变得危险、受限且成本高昂,严重影响了他们的健康相关生活质量(HRQoL)。由于缺乏荷兰癫痫负担的数据,需要开展研究来了解癫痫对个人、护理人员和社会的影响,以增进认识并帮助应对癫痫发作的负担。 方法与分析:该研究是AIM@EPILEPSY项目的一部分。该项目旨在开发一套规划方案,实现对癫痫的节约成本、微创治疗。通过对荷兰330名癫痫患者以及预计150 - 200名非正式护理人员进行调查,使用侧重于相关社会成本和对健康相关生活质量影响的标准化问卷,这项基于患病率的自下而上的前瞻性研究旨在了解荷兰耐药性癫痫的社会负担。数据将在随访的0、3、6和12个月收集。研究结果将描述癫痫的经济影响,重点关注荷兰的疾病成本(欧元)和健康相关生活质量(效用)。伦理与传播:拟议的研究已获得马斯特里赫特大学医学伦理审查委员会的批准(批准参考号:FHML - REC/2024/067/修正案/2024_16)。研究结果计划发表在同行评审期刊上,并在国际和地方科学会议上展示。
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