Ly Kai Yan, Vélius Élodie, Pitot Maxime, Rivieri Lionel, Dupont Morvan
Association Les Aguerris, 52, rue Pernety, 75014 Paris, France.
Association Les Aguerris, 52, rue Pernety, 75014 Paris, France.
Bull Cancer. 2015 Jul-Aug;102(7-8):704-6. doi: 10.1016/j.bulcan.2015.04.002. Epub 2015 Apr 28.
In France, we can estimate that 50,000 adults are childhood or adolescence cancer survivors. Not all of them will experience late effects but they should be informed about their previous disease and should get a detailed summary of treatment information including a personal plan for late effects screening. They also should have access to appropriate follow-up care including detection and treatment of late effects and provision of support and advice. From a follow-up clinic experience, the need of a survivor association has emerged and "Les Aguerris" has been created with several objectives: to improve the quality of life of survivors providing them information about the possible physical, social and psychological consequences of childhood cancer, to raise awareness of public authorities and other actors on questions regarding the need of long-term follow-up of the patients in dedicated clinics, to support researches about late effects of cancer and treatments and to create a network of adult survivors of childhood cancer in relation with other European survivors or parents associations. This paper describes the activities of the association to fulfill its objectives and the annual national meetings they are organizing.
在法国,我们估计有5万名成年人是儿童期或青少年期癌症幸存者。并非所有人都会经历迟发效应,但他们应该了解自己之前的疾病,并获得一份详细的治疗信息总结,包括个人迟发效应筛查计划。他们还应能获得适当的后续护理,包括迟发效应的检测和治疗,以及提供支持和建议。从后续诊所的经验来看,出现了对幸存者协会的需求,于是“Les Aguerris”成立了,其有多个目标:改善幸存者的生活质量,为他们提供有关儿童癌症可能产生的身体、社会和心理后果的信息;提高公共当局和其他行为者对在专门诊所对患者进行长期随访必要性问题的认识;支持关于癌症和治疗迟发效应的研究;建立一个与其他欧洲幸存者或家长协会相关的儿童癌症成年幸存者网络。本文描述了该协会为实现其目标而开展的活动以及他们组织的年度全国会议。