Hjorth Lars, Haupt Riccardo, Skinner Roderick, Grabow Desiree, Byrne Julianne, Karner Sabine, Levitt Gill, Michel Gisela, van der Pal Helena, Bárdi Edit, Beck Jörn D, de Vathaire Florent, Essig Stefan, Frey Eva, Garwicz Stanislaw, Hawkins Mike, Jakab Zsuzsanna, Jankovic Momcilo, Kazanowska Bernarda, Kepak Tomas, Kremer Leontien, Lackner Herwig, Sugden Elaine, Terenziani Monica, Zaletel Lorna Zadravec, Kaatsch Peter
Skåne University Hospital, Lund University, Lund, Sweden.
Istituto Giannina Gaslini, Genova, Italy.
Eur J Cancer. 2015 Jul;51(10):1203-11. doi: 10.1016/j.ejca.2015.04.002. Epub 2015 May 6.
Survival after childhood cancer has improved substantially over recent decades. Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long-term survivors. It is estimated that there are between 300,000 and 500,000 childhood cancer survivors in Europe. Such good survival prospects raise important questions relating to late effects of treatment for cancer. Research has shown that the majority will suffer adverse health outcomes and premature mortality compared with the general population. While chronic health conditions are common among childhood cancer survivors, each specific type of late effect is very rare. Long-term effects must be considered particularly when addressing complex multimodality treatments, and taking into account the interaction between aspects of treatment and genotype. The PanCare Network was set up across Europe in order to effectively answer many of these questions and thereby improve the care and quality of life of survivors. The need for a structured long-term follow-up system after childhood cancer has been recognised for some time and strategies for implementation have been developed, first nationally and then trans-nationally, across Europe. Since its first meeting in Lund in 2008, the goal of the PanCare Network has been to coordinate and implement these strategies to ensure that every European survivor of childhood and adolescent cancer receives optimal long-term care. This paper will outline the structure and work of the PanCare Network, including the results of several European surveys, the start of two EU-funded projects and interactions with relevant stakeholders and related projects.
近几十年来,儿童癌症患者的生存率有了显著提高。尽管儿童癌症较为罕见,但治疗方法日益有效,使得长期存活者的数量不断增加。据估计,欧洲有30万至50万名儿童癌症幸存者。如此良好的生存前景引发了与癌症治疗后期影响相关的重要问题。研究表明,与普通人群相比,大多数幸存者将遭受不良健康后果和过早死亡。虽然慢性健康状况在儿童癌症幸存者中很常见,但每种特定类型的后期影响都非常罕见。在采用复杂的多模式治疗方法时,尤其要考虑长期影响,并考虑治疗各方面与基因型之间的相互作用。泛欧儿童癌症长期幸存者健康研究与生活质量改善网络(PanCare Network)在欧洲各地设立,以便有效解答其中许多问题,从而改善幸存者的护理和生活质量。儿童癌症后建立结构化长期随访系统的必要性已得到认可一段时间,并且已经制定了实施策略,首先是在全国范围内,然后是跨国,在整个欧洲实施。自2008年在隆德首次会议以来,泛欧儿童癌症长期幸存者健康研究与生活质量改善网络的目标一直是协调和实施这些策略,以确保每一位欧洲儿童和青少年癌症幸存者都能获得最佳的长期护理。本文将概述泛欧儿童癌症长期幸存者健康研究与生活质量改善网络的结构和工作,包括几项欧洲调查的结果、两个欧盟资助项目的启动以及与相关利益攸关方和相关项目的互动。