Demoor-Goldschmidt Charlotte, Tabone Marie-Dominique, Bernier Valérie, de Vathaire Florent, Berger Claire
1 Cancer and Radiation team, Centre for Research in Epidemiology and Population Health (CESP), INSERM U1018, University Paris-Sud, UVSQ, University Paris-Saclay , Villejuif , France.
2 Department of Pediatric Onco-hematology, CHU Angers , Angers , France.
Br J Radiol. 2018 Apr;91(1084):20170819. doi: 10.1259/bjr.20170819. Epub 2018 Jan 10.
The survival rate of children treated for cancer is currently about 80% at 5 years and we estimate that about 50,000 adults in France have survived childhood cancer. In 2011, there was a call for projects relating to long-term follow-up (LTFU), which led to several studies being conducted. Five years later, we sent a questionnaire to present LTFU in France and describe its strengths and weaknesses and to establish appropriate steps that should be taken.
A questionnaire was sent by email to all the members of the French Society of Childhood Cancers in spring 2016. The study involved 44 centres/hospitals with a Paediatric Oncology Department.
54 answers were analysed, provided by 31/44 (70%) centres working together with the French Society of Childhood Cancers. Screening is the main objective of LTFU care (90%). The main difficulties that arose were: lack of sufficient time to devote to this activity (57%), difficulties contacting adult childhood cancer survivors (aCCSs) (26%), aCCSs who ultimately did not show up to the consultation (19%), cost (15%), and lack of organization (13%). Seven LTFU programmes were identified: two regional organizations (Rhône Alpes and Grand Ouest), four centre-size organizations, and one national study (involving 15 Haematology Centres) relating to Child and Adolescent Leukaemia.
LTFU is a major concern for French centres specialized in paediatric oncology. Organization is not well defined and difficulties still arise (Who are the best care providers? What frequency of care is most appropriate? etc.). Advances in knowledge: LTFU focused on health problems (physical, psychological, social, economic issues) that affect CCSs is needed to ensure that these patients regain the most optimal physical and emotional health possible. Practitioners suggest different ways to improve LTFU, such as national co-operation with Epidemiology Registers to promote homogenous LTFU care.
目前，接受癌症治疗的儿童5年生存率约为80%，我们估计法国约有5万名成年人曾患儿童癌症并存活下来。2011年，发起了一项关于长期随访（LTFU）项目的呼吁，这促成了多项研究的开展。五年后，我们发放了一份调查问卷，以呈现法国的长期随访情况，描述其优缺点，并确定应采取的适当措施。
2016年春季，通过电子邮件向法国儿童癌症协会的所有成员发放了一份调查问卷。该研究涉及44个设有儿科肿瘤科的中心/医院。
分析了54份回复，这些回复来自与法国儿童癌症协会合作的31/44（70%）个中心。筛查是长期随访护理的主要目标（90%）。出现的主要困难有：缺乏足够时间投入此项活动（57%）、难以联系成年期儿童癌症幸存者（aCCSs）（26%）、成年期儿童癌症幸存者最终未前来咨询（19%）、费用（15%）以及缺乏组织（13%）。确定了七个长期随访项目：两个地区性组织（罗讷-阿尔卑斯大区和大西部）、四个中心规模的组织以及一项关于儿童和青少年白血病的全国性研究（涉及15个血液学中心）。
长期随访是法国儿科肿瘤专业中心的一个主要关注点。组织工作定义不明确，困难仍然存在（谁是最佳护理提供者？最合适的护理频率是多少？等等）。知识进展：需要针对影响儿童癌症幸存者（CCSs）的健康问题（身体、心理、社会、经济问题）开展长期随访，以确保这些患者尽可能恢复最佳的身体和情绪健康。从业者提出了不同的方法来改善长期随访，例如与流行病学登记处进行全国性合作，以促进统一的长期随访护理。
