PALLIAKID: Comprehensive Paediatric Palliative Care Approach

PALLIAKID是一个跨学科项目，旨在评估针对欧洲不同医疗系统中有姑息和临终关怀需求的儿童、青少年和年轻人(AYA)的新型干预措施的可行性、有效性和成本效益，重点关注那些影响活跃患者和家庭照顾者参与度的因素。PALLIAKID对联盟临床合作伙伴确定的几个需求或差距做出回应，分为儿科姑息护理的三个基石：1)早期识别有姑息和临终护理需求的儿童和AYA，2)对儿童及其家庭照顾者的需求进行全面评估，3)全面、个性化、跨学科的护理计划，包括高级护理计划。拟议的解决方案包括三个主要成果：PALLIAKID早期检测系统、PALLIAKID干预(需求评估、高级护理规划和患者旅程数字平台)以及基于PALLIAKID XR的专业人员能力建设计划。此外，该项目将为以患者为中心的沟通制定政策建议、指导方针和标准，并制定扩大战略，以确保项目成果的可持续性和影响力。在这个意义上，PALLIAKID旨在通过其活动和计划中的公共参与战略减少对儿科姑息治疗的禁忌和误解。该联盟由19个实体组成，它们拥有应对拟议目标所需和互补的专门知识和知识，包括三合会视角(儿童-专业)：共同设计和测试PALLIAKID解决方案的五个临床地点；两个欧洲网络；四个需求评估和待调整的ACP工具专家(HexCom和Impact)；三个技术合作伙伴；一名评估专家；三名SSH专家；以及一名数据和伦理问题专家。

PALLIAKID is an interdisciplinary project aiming to evaluate the feasibility, effectiveness, and cost-effectiveness of novel interventions for children, adolescents and young people (AYA) with palliative and end-of--life care needs in different healthcare systems across Europe, with a focus on those factors that influences the active patients' and family caregivers' engagement. PALLIAKID responds to several needs or gaps identified by the consortium clinical partners, grouped into three cornerstones of paediatric palliative care: 1) Early identification of children and AYAs with palliative and end-of-life care needs, 2) Comprehensive assessment of children and their family caregivers' needs, 3) A comprehensive, personalised, interdisciplinary care plan including Advance Care Planning. The proposed solution entails three main results: PALLIAKID Eary Detection System, PALLIAKID intervention (Needs assessment, Advance Care Planning and Patient Journey digital platform); and PALLIAKID XR-based capacity-building program for professionals. In addition, the project will develop policy recommendations, guidelines and standards for patient-centred communication, together with a scale-up strategy to guarantee the project result's’ sustainability and impact. In this sense, PALLIAKID aims to reduce taboos and misunderstandings of paediatric palliative care with its activities and the planned Public Engagement Strategy. The consortium is composed of 19 entities with the needed and complementary expertise and knowledge to respond to the proposed objectives, including the triad perspective (childfamily-professional): five clinical sites to co-design and test the PALLIAKID solutions, two European networks, four experts in the needs assessment and ACP tools to be adapted (HexCom and IMPACT), three technological partners, one expert in evaluation, three experts in SSH and one expert in data and ethical issues.