Giusti Francesco, Martos Carmen, Negrão Carvalho Raquel, Van Eycken Liesbet, Visser Otto, Bettio Manola
European Commission, Joint Research Centre (JRC), Ispra, Italy.
Belgian Cancer Registry, Brussels, Belgium.
Front Oncol. 2023 Jul 28;13:1219128. doi: 10.3389/fonc.2023.1219128. eCollection 2023.
Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure data quality are validity, completeness, comparability and timeliness. The aim of this article is to evaluate the quality of PBCRs data collected in the first ENCR-JRC data call, dated 2015.
All malignant tumours, except skin non-melanoma, and and uncertain behaviour of bladder were obtained from 130 European general PBCRs for patients older than 19 years. Proportion of cases with death certificate only (DCO%), proportion of cases with unknown primary site (PSU%), proportion of microscopically verified cases (MV%), mortality to incidence (M:I) ratio, proportion of cases with unspecified morphology (UM%) and the median of the difference between the registration date and the incidence date were computed by sex, age group, cancer site, period and PBCR.
A total of 28,776,562 cases from 130 PBCRs, operating in 30 European countries were included in the analysis. The quality of incidence data reported by PBCRs has been improving across the study period. Data quality is worse for the oldest age groups and for cancer sites with poor survival. No differences were found between males and females. High variability in data quality was detected across European PBCRs.
the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time.
基于人群的癌症登记处（PBCRs）的任务是收集高质量数据，这对于监测癌症负担及其趋势、规划和评估癌症控制活动、临床和流行病学研究以及制定卫生政策至关重要。衡量数据质量的主要指标是有效性、完整性、可比性和及时性。本文的目的是评估在2015年第一次ENCR-JRC数据调用中收集的PBCRs数据的质量。
从130个欧洲普通PBCRs获取了所有恶性肿瘤（皮肤非黑色素瘤除外）以及膀胱行为不确定的病例，这些病例来自19岁以上的患者。按性别、年龄组、癌症部位、时期和PBCR计算仅持有死亡证明的病例比例（DCO%）、原发部位未知的病例比例（PSU%）、显微镜检查确诊的病例比例（MV%）、死亡率与发病率之比（M:I）、形态未明确的病例比例（UM%）以及登记日期与发病日期之差的中位数。
分析纳入了在30个欧洲国家运作的130个PBCRs的总共28,776,562例病例。在整个研究期间，PBCRs报告的发病数据质量一直在提高。年龄最大的年龄组以及生存率低的癌症部位的数据质量较差。未发现男性和女性之间存在差异。在欧洲PBCRs中检测到数据质量存在很大差异。
本文报告的结果应被解释为长期监测欧洲PBCRs数据质量指标的基线。
