Evaluation of data quality at the Hungarian National Cancer Registry, 2000-2019

被引:12
作者
Weber, Andras [1 ,2 ,3 ]
Mery, Les
Nagy, Peter [2 ,4 ]
Polgar, Csaba
Bray, Freddie
Kenessey, Istvan [1 ,2 ]
机构
[1] Natl Inst Oncol, Hungarian Natl Canc Registry, Budapest, Hungary
[2] Natl Inst Oncol, Natl Tumorbiol Lab, Budapest, Hungary
[3] Int Agcy Res Canc, Canc Surveillance Branch, Lyon, France
[4] Natl Inst Oncol, Dept Mol Immunol & Toxicol, Budapest, Hungary
关键词
Cancer registry; Data quality; Comparability; Completeness; Validity; Timeliness; Hungary; COMPARABILITY; COMPLETENESS; VALIDITY;
D O I
10.1016/j.canep.2022.102306
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background: The Hungarian National Cancer Registry (HNCR) was legally established as a population-based cancer registry in 1999, and its operation started in 2000 supporting the planning and development of the Hungarian oncology network as well as informing national cancer control policies. Ensuring comparable, ac-curate, and complete data on malignant and in situ neoplasms is critical in determining the applicability of the database. The aim of this study was to perform a comprehensive evaluation of the data quality at the HNCR. Methods: Based on qualitative and semiquantitative methods from current international guidelines, we assess the comparability, completeness, validity, and timeliness of the collected data over the diagnostic period 2000-2019, with a focus on the year 2018. Results: Coding practices and the classification system used at the HNCR are based on the International Classi-fication of Diseases (ICD-10), which differs from the internationally recommended ICD-O. The annual trends in incidence did not indicate major fluctuations, that may have resulted from data collection discrepancies, while comparisons of the mortality-to-incidence ratio (M:I) compared with 1 minus 5-year observed survival indicated some systematic differences requiring further exploration. The age-standardized (European standard) incidence rate per 100 000 measured by the HNCR in 2018 was very high: 647.9 for men and 501.6 for women, 11.6% and 14.6% higher than the International Agency for Research on Cancer (IARC) estimates respectively. Behind the overall differences between the two data sources, we identified that the vast majority were due to ill-defined ICD codes: malignant neoplasm of other and ill-defined sites (C76), and malignant neoplasm without specification of site (C80). Otherwise, there were no major discrepancies by localization. The proportion of morphologically verified cancer cases was 57.8% overall, that of death certificates was 2.3%, and that of unknown primary tumors was 1.4%. Conclusion: Further implementations and interventions are required to ensure that the operations, coding practices, and the classification system used at the national registry are in accordance with international stan-dards, and to increase the completeness and validity of the collected cancer data. In particular, the low morphologically verified proportion questions the overall accuracy of the stated diagnoses within the database. Nevertheless, our examination implies that the data of the HNCR are reasonably comparable, and without doubt fulfill the requirements to support national oncology services and cancer planning. However, most importantly, a review of registry personnel and resource requirements to run the national population-based cancer registry should be an essential part of Hungary's national cancer strategy.
引用
收藏
页数:7
相关论文
共 27 条
  • [1] [Anonymous], Cancer today
  • [2] [Anonymous], 2019, ICD-10 Version
  • [3] Bray E.F., CANC INCIDENCE 5 CON, V11, P1558
  • [4] Evaluation of data quality in the cancer registry: Principles and methods. Part I: Comparability, validity and timeliness
    Bray, Freddie
    Parkin, D. Max
    [J]. EUROPEAN JOURNAL OF CANCER, 2009, 45 (05) : 747 - 755
  • [5] Bray Freddie, PLANNING DEVELOPING
  • [6] Cimlap, US
  • [7] Demaret Eva, INT RULES MULTIPLE P, VThird
  • [8] Data quality at the Bulgarian National Cancer Registry: An overview of comparability, completeness, validity and timeliness
    Dimitrova, Nadya
    Parkin, Donald Maxwell
    [J]. CANCER EPIDEMIOLOGY, 2015, 39 (03) : 405 - 413
  • [9] encr, NATL PEDIAT CANC REG
  • [10] Cancer incidence and mortality patterns in Europe: Estimates for 40 countries and 25 major cancers in 2018
    Ferlay, J.
    Colombet, M.
    Soerjomataram, I.
    Dyba, T.
    Randi, G.
    Bettio, M.
    Gavin, A.
    Visser, O.
    Bray, F.
    [J]. EUROPEAN JOURNAL OF CANCER, 2018, 103 : 356 - 387