Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands.
Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands.
Eur J Cancer. 2021 Sep;154:316-328. doi: 10.1016/j.ejca.2021.06.004. Epub 2021 Jul 29.
Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines.
The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries.
Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10).
The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020-funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.
对儿童、青少年和青年期癌症幸存者（CAYA）进行长期随访（LTFU）护理对于保持健康和生活质量（QoL）至关重要。需要循证指南来为最佳监测策略提供信息，但国际儿童癌症晚期效应指南协调组（IGHG）尚未解决许多问题。因此，PanCareFollowUp 推荐工作组与利益相关者合作，制定欧洲协调一致的建议，为循证 IGHG 指南做准备。
PanCareFollowUp 推荐工作组由来自 9 个国家的 23 名晚期效应专家、研究人员和幸存者代表组成，首次在欧洲范围内合作，提供统一的建议，为循证指南做准备。采用实用方法来为尚无循证 IGHG 建议的主题制定建议。目标是描述高质量护理的监测要求，同时平衡欧洲医疗保健系统中不同的基础设施和资源。该过程包括两次面对面会议和一轮外部咨询，涉及来自 14 个国家的 18 名专家。
制定了 25 项 LTFU 护理协调建议，涉及仅需要意识（n=6）、意识、病史和/或体格检查（n=9）或额外监测测试（n=10）的主题。
代表欧洲利益相关者独特共识的 PanCareFollowUp 建议，除了针对幸存者和医疗保健提供者的意识外，还强调了幸存者和医疗保健提供者的意识，以及量身定制的临床评估和/或监测测试。它们包括现有的 IGHG 指南和由实用方法制定的其他建议，并将在由欧洲地平线 2020 资助的 PanCareFollowUp 项目中使用，以改善 CAYA 癌症幸存者的健康和生活质量。
