van Kalsbeek Rebecca J, Mulder Renée L, Haupt Riccardo, Muraca Monica, Hjorth Lars, Follin Cecilia, Kepak Tomas, Kepakova Katerina, Uyttebroeck Anne, Mangelschots Marlies, Winther Jeanette Falck, Loonen Jacqueline J, Michel Gisela, Bardi Edit, Elmerdahl Frederiksen Line, den Hartogh Jaap, Mader Luzius, Roser Katharina, Schneider Carina, Brown Morven C, Brunhofer Melanie, Göttgens Irene, Hermens Rosella P M G, Kienesberger Anita, Korevaar Joke C, Skinner Roderick, van der Pal Helena J H, Kremer Leontine C M
Princess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
Epidemiology and Biostatistics Unit and DOPO Clinic, IRCCS Istituto Giannina Gaslini, Genoa, Italy.
Eur J Cancer. 2022 Feb;162:34-44. doi: 10.1016/j.ejca.2021.10.035. Epub 2021 Dec 22.
Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe.
The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan.
We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project.
The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being.
长期随访（LTFU）护理虽获认可，但大多数儿童、青少年及青年期（CAYA）癌症成年幸存者无法得到。实施障碍包括时间、知识、人员和资金的缺乏。迫切需要可持续的解决方案来满足CAYA癌症幸存者的需求，以提高生活质量并减轻幸存者、医疗保健系统和社会的后期影响负担。由泛欧儿童和青少年癌症幸存者护理网络发起的、由欧盟资助的PanCareFollowUp项目，旨在促进全欧洲以患者为中心的幸存者护理的实施。
PanCareFollowUp护理干预是与幸存者共同开发的，作为PanCareFollowUp项目的一部分。这是一种以患者为中心的幸存者护理方法，有指南支持且具有灵活性，可适应当地医疗保健环境。护理干预包括三个步骤：（1）（由幸存者）预先完成幸存者问卷和（由医疗保健提供者[HCP]）治疗总结，（2）门诊就诊，包括共同决策，以及（3）随访电话以最终确定个性化的幸存者护理计划。
我们开发了PanCareFollowUp护理干预的关键组成部分：PanCareFollowUp幸存者问卷、治疗总结模板、幸存者护理计划模板以及针对HCP和幸存者的教育材料。PanCareFollowUp项目完成后，将通过免费分发的复制手册支持PanCareFollowUp护理干预的广泛实施。
PanCareFollowUp护理干预将支持在欧洲不同医疗保健环境中实施以患者为中心、基于指南的长期随访护理，以改善幸存者的健康和福祉。
