Quality measures of the population-based Finnish Cancer Registry indicate sound data quality for solid malignant tumours

Quality measures of the population-based Finnish Cancer Registry indicate sound data quality for solid malignant tumours
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基于人群的芬兰癌症登记处的质量测量表明实体恶性肿瘤的数据质量良好

DOI:
10.1016/j.ejca.2017.02.017
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发表时间:
2017-05-01
影响因子:
8.4
通讯作者:
Malila, Nea
Malila, Nea
中科院分区:
医学1区
文献类型:
--
作者:
Leinonen, Maarit K.;Miettinen, Joonas;Malila, Nea

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背景:芬兰癌症登记处(FCR)自1953年以来一直收集基于人群的癌症发病率数据,用于科学研究和统计目的。我们的目的是为芬兰当前的癌症登记数据提供全面的质量评估。方法:我们使用既定的定量和半定量技术来解决1953-2013年期间数据质量的四个主要维度:完整性、可比性、有效性和及时性,特别关注2009-2013年诊断的癌症。结果:2009-2013年间,FCR共登记了153 147个肿瘤事故。其中91%为实体瘤。所有实体肿瘤的完整性估计为96%,非实体肿瘤的完整性为86%。潜在的漏报最突出的是没有典型的组织学证实的肿瘤,如血液系统恶性肿瘤和中枢神经系统的非恶性肿瘤。在所有癌症中,93%的肿瘤经形态检查证实,不同的原发部位不同。原发灶不确定或定义不明确的癌症比例和仅登记死亡证明的比例均较低,分别为1.9%和2.6%。结论:FCR为实体恶性肿瘤提供了总体准确和接近完整的全国癌症数据。没有组织学的肿瘤登记仍然受到影响。这需要与临床医生持续沟通,以确保数据流不受干扰,并使用外部数据源(如医院管理数据)进行主动回溯。此外,在进行国际比较时,宽泛的诊断类别对投入的多样性和数据质量不那么敏感。(C)2017爱思唯尔有限公司。保留所有权利。
Background: The Finnish Cancer Registry (FCR) has collected population-based data on cancer incidence for scientific research and statistical purposes since 1953. Our aim was to provide a comprehensive quality assessment of the current cancer registry data in Finland.Methods: We used established quantitative and semi-quantitative techniques to address four main dimensions of data quality: completeness, comparability, validity and timeliness for the period 1953-2013, with a special focus on cancers diagnosed in 2009-2013. For completeness, hospital admissions and outpatient visits were used as an independent data source.Results: In 2009-2013, 153 147 incident tumours were registered in the FCR. Of them, 91% were solid tumours. The completeness for all solid tumours was estimated at 96%, and for non-solid tumours at 86%. Potential underreporting was most prominent for tumours which are not typically histologically verified such as haematological malignancies and nonmalignant tumours of the central nervous system. Of all cancers, 93% were morphologically verified, with variation by primary site. The proportion of cancers with uncertain or ill-defined primary site and the proportion of death certificate only registrations were both low at 1.9% and 2.6%, respectively.Conclusions: The FCR provides overall accurate and close to complete national cancer data for solid malignant tumours. Registration of tumours with no histology is still compromised. This warrants continuous communication with clinicians to ensure undisturbed data flow, and active trace-back using external data sources such as hospital administrative data. In addition, broad diagnosis categories would be less sensitive to diversity of input and data quality when international comparisons are made. (C) 2017 Elsevier Ltd. All rights reserved.