PALLIAKID: Comprehensive Paediatric Palliative Care Approach

PALLIAKID是一个跨学科项目，旨在评估欧洲不同医疗保健系统中具有姑息和临终护理需求的儿童，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，重点关注影响活跃患者和家庭护理人员参与的因素。PALLIAKID响应了联盟临床合作伙伴确定的几个需求或差距，分为儿科姑息治疗的三个基石：1）早期识别具有姑息治疗和临终护理需求的儿童和AYA，2）全面评估儿童及其家庭护理人员的需求，3）全面，个性化，跨学科的护理计划，包括提前护理计划。拟议的解决方案需要三个主要成果：PALLIAKID早期检测系统，PALLIAKID干预（需求评估，提前护理计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，该项目将为以病人为中心的沟通制定政策建议、准则和标准，同时制定一项扩大战略，以保证项目成果的可持续性和影响力。从这个意义上说，PALLIAKID旨在通过其活动和计划的公众参与战略减少儿科姑息治疗的禁忌和误解。该联盟由19个实体组成，这些实体拥有所需的互补专业知识和知识，以应对拟议的目标，包括三合会的观点（儿童家庭-专业人员）：五个临床研究中心共同设计和测试PALLIAKID解决方案，两个欧洲网络，四名需求评估专家和ACP工具（HexCom和IMPACT）、三名技术伙伴、一名评价专家、三名SSH专家和一名数据和道德问题专家。

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.