Strategy for Long-Term Surveillance at the German Childhood Cancer Registry - an Update
Strategy for Long-Term Surveillance at the German Childhood Cancer Registry - an Update
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DOI：
10.1055/s-0031-1275352
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发表时间：
2011-05-01
影响因子：
1
通讯作者：
Kaatsch, P.
中科院分区：
文献类型：
--
作者：
Grabow, D.;Spix, C.;Kaatsch, P.
背景资料：本文的目的是提供有关质量的信息根据德国儿童癌症登记处（GCCR）实施的结构，在德国儿科肿瘤学和血液学中进行长期监测（例如完整性、反应）。GCCR联系父母或患者，收集和更新最小的随访健康状况数据集的信息（如晚期复发，随后的肿瘤，目前的地址），并与适当的临床试验定期交流这一信息。在长期监测的背景下，GCCR共接触了约20 000名患者（16岁时接触，询问健康状况）。必须通过市政登记处对11 000个以前病人的地址进行研究。答复率从56%到68%不等，在市政办公室的研究提供了93-96%的有效地址。在1980年至2009年诊断的46115例患者中，25283例在2010年接受长期监测。讨论：长期监测需要GCCR进行大量的后勤工作，每年需要邮寄数千封信件，以确保定期更新信息。长期监测是必不可少的，以更好地了解晚期效应，随后的肿瘤和生活质量的前儿童癌症患者。
Background: The objective of this paper is to provide information about the quality (e.g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR).Methods: The GCCR contacts parents or patients to collect and update information on a minimal set of follow-up health status data (e.g. late relapses, subsequent neoplasms, current address) and exchanges this information regularly with the appropriate clinical trials.Results: Between 2006 and 2010. GCCR approached a total of about 20 000 patients (contact at the age of 16 years, inquiry concerning the health status) in the context of long-term surveillance. 11 000 addresses of former patients had to be researched via municipal registrar's offices. The response rates ranged from 56% to 68%, the research in municipal offices provided 93-96% valid addresses. Of 46 115 patients diagnosed between 1980 and 2009, 25 283 are in long-term surveillance in 2010.Discussion: Long-term surveillance requires considerable logistic effort at GCCR and requires that thousands of letters be mailed each year in order to ensure regularly updated information. Long-term surveillance is indispensable for a better understanding of late effects, subsequent neoplasms and quality of life of former childhood cancer patients.