Background: The registry-based collection of detailed cancer and late effect (LE) data in childhood and adolescent cancer (CAC) is rarely explored. Aim: We aimed to provide an overview of CAC registration practices in Europe and share a Slovenian example. Methods: We distributed a questionnaire among European cancer registries on disease, treatment and LE registration and present the system at the Slovenian Cancer Registry along with an example of retrospectively collected LE data from a cohort of central nervous system tumour survivors from 1983 to 2000. Kaplan–Meier and Cox regression were used to calculate the LE incidence. Results: Out of 27 responding registries, over 80% registered cancer type, vital status, death and second primary cancer data. Less than 20% registered cumulative doses of radiation and systemic therapy or progressions. Only three registered LEs. The obstacles in setting up LE collection in registries are a lack of standardization in the variable sets, definitions and methods of collection. In the retrospective cohort, neurological and endocrine LEs were most common. Females had a higher risk of endocrine LEs (HR of 1.89; 95% CI of 1.08–3.31), while patients treated with radiotherapy had higher risks of endocrine (3.47; 1.80–6.69), musculoskeletal and skin LEs (3.16; 1.60–6.26) and second primary cancers (2.85; 1.18–6.75). Conclusions: Standardization and harmonization are necessary to promote detailed CAC and LE registration.
背景：基于登记系统收集儿童及青少年癌症（CAC）的详细癌症及远期效应（LE）数据的研究尚不充分。目的：本研究旨在概述欧洲CAC登记实践，并以斯洛文尼亚为例进行说明。方法：我们向欧洲癌症登记机构发放了关于疾病、治疗及LE登记的调查问卷，并介绍了斯洛文尼亚癌症登记系统的运作模式，同时以1983年至2000年间中枢神经系统肿瘤幸存者队列的回顾性LE数据收集为例进行展示。研究采用Kaplan-Meier法和Cox回归模型计算LE发生率。结果：在27家回复的登记机构中，超过80%登记了癌症类型、生存状态、死亡及第二原发癌数据；不足20%登记了放射治疗与系统治疗的累积剂量或疾病进展信息；仅三家机构登记了LE数据。在登记系统中建立LE数据收集的主要障碍在于变量集、定义及收集方法缺乏标准化。在回顾性队列中，神经性和内分泌性LE最为常见。女性患者发生内分泌性LE的风险更高（风险比HR为1.89；95%置信区间CI为1.08-3.31），而接受放疗的患者发生内分泌性（3.47；1.80-6.69）、肌肉骨骼与皮肤性LE（3.16；1.60-6.26）及第二原发癌（2.85；1.18-6.75）的风险显著增高。结论：推动CAC及LE详细登记工作需建立标准化与协调化体系。
肿瘤(癌症)患者之家