Alied Marcel, Law-Clucas Sophie, Allsop Matthew J, Ramsenthaler Christina, May Peter, Bearne Alastair, Powell Margaret, Rosling John, Kumar Rashmi, Scerri Lisa, Williams Rebekah, Sleeman Katherine E, Laverty Diane, James Denzil, Verne Julia, Saravanakumar Kavitha, Costelloe Ceire E, Droney Joanne, Koffman Jonathan
Health Informatics, Division of Clinical Studies, The Institute of Cancer Research, London, UK.
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
BMJ Open. 2025 Mar 5;15(3):e093175. doi: 10.1136/bmjopen-2024-093175.
Electronic Palliative Care Coordination Systems (EPaCCS) are electronic registers that aim to facilitate documentation and sharing of up-to-date information about patients' end-of-life preferences and plans for care among different health services. They aim to improve patients' experiences and outcomes and mitigate costs linked to undesired aggressive care. However, evidence on the equitable delivery of EPaCCS and the extent to which advance care planning (ACP) enhances end-of-life care remains sparse. This study aims to explore the effect of EPaCCS on healthcare outcomes, service utilisation, and costs. It will also estimate the association between social determinants of health and the content and use of EPaCCS.
The PREPARE project is a retrospective observational cohort study conducted in two phases. We will analyse routinely collected data from three EPaCCS registers from London, Bradford and Leeds. The first phase will use descriptive analysis to describe the completeness of EPaCCS, the content of EPaCCS, and socio-demographic and clinical characteristics of individuals with EPaCCS, and will model the relationship between social determinants of health and completion of ACP components and the creation of EPaCCS. The second phase will use a natural experiment to compare quality indicators (place of death and hospital use) between individuals with EPaCCS and those without. The control groups will be identified through the Leeds decedent dataset and through linking the London EPaCCS register to an electronic record used in North West London. Also, we will quantify healthcare costs and outcomes.
Research approval has been secured from the Health Research Authority (ref 24/LO/0194), London - South East Research Ethics Committee (ref 24/LO/0194) and Confidentiality Advisory Group (ref 24/CAG/0046). Dissemination of findings will occur through peer-reviewed publications, knowledge exchange events and collaborative efforts with patient and public involvement partners.
电子姑息治疗协调系统（EPaCCS）是电子登记册，旨在促进不同医疗服务之间关于患者临终偏好和护理计划的最新信息的记录与共享。其目的是改善患者体验和结局，并降低与不必要的积极治疗相关的成本。然而，关于EPaCCS公平提供以及预先护理计划（ACP）在多大程度上改善临终护理的证据仍然稀少。本研究旨在探讨EPaCCS对医疗保健结局、服务利用和成本的影响。它还将估计健康的社会决定因素与EPaCCS的内容和使用之间的关联。
PREPARE项目是一项分两个阶段进行的回顾性观察队列研究。我们将分析从伦敦、布拉德福德和利兹的三个EPaCCS登记册中常规收集的数据。第一阶段将使用描述性分析来描述EPaCCS的完整性、EPaCCS的内容以及拥有EPaCCS的个体的社会人口统计学和临床特征，并将对健康的社会决定因素与ACP组件的完成以及EPaCCS的创建之间的关系进行建模。第二阶段将使用自然实验来比较拥有EPaCCS的个体和没有EPaCCS的个体之间的质量指标（死亡地点和医院使用情况）。对照组将通过利兹死者数据集以及将伦敦EPaCCS登记册与伦敦西北部使用的电子记录相链接来确定。此外，我们将量化医疗保健成本和结局。
已获得健康研究管理局（参考号24/LO/0194）、伦敦 - 东南研究伦理委员会（参考号24/LO/0194）和保密咨询小组（参考号24/CAG/0046）的研究批准。研究结果将通过同行评审出版物、知识交流活动以及与患者和公众参与伙伴的合作努力进行传播。
