Sousa Mariana P, Monjardino Teresa, Santos Cristina Costa, Lara Lúcio, Bento Maria José
Epidemiology, Outcomes, Economics and Management in Oncology Group-Portuguese Oncology Institute of Porto Research Center (CI-IPOP), Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), 4200-072 Porto, Portugal.
Experimental Pathology and Therapeutics Group-Research Center, Porto Comprehensive Cancer Center (Porto.CCC) & RISE@CI-IPOP (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto), 4200-072 Porto, Portugal.
Cancers (Basel). 2025 Mar 27;17(7):1123. doi: 10.3390/cancers17071123.
Population-based cancer registries are crucial for tracking cancer trends, supporting research, guiding policy decisions, and ensuring efficient healthcare resource allocation. However, their effectiveness relies heavily on data quality, specifically the completeness of the cancer registration process.
BACKGROUND/OBJECTIVES: This systematic review aims to identify the methods used by adult population-based cancer registries worldwide to assess the completeness of their data. It also considered the significant role of high-quality data in method selection and the significant challenges of data handling.
A comprehensive electronic literature search was conducted across the Web of Science, Scopus, and PubMed for studies published from January 2004 to December 2024. The review was written according to PRISMA guidelines, and the risk of bias was assessed using the Joanna Briggs Institute tool.
The review identified 83 studies from 31 countries, the majority from Europe, especially Nordic and Central European countries. Most studies met high-quality standards, with only one study scoring below 75%. Common approaches include independent case ascertainment (the most used), a capture-recapture analysis, a death-certificate-only analysis, and comparisons with historical rates. While independent case ascertainment is valuable when high-quality auxiliary sources are available, its accuracy varies. Other methods, like capture-recapture or Mortality-to-Incidence ratios, may be more accurate or feasible in some cases.
The findings suggest that methods for completeness evaluations vary widely across registries, influenced by data quality and regional practices. The results emphasize the importance of the continuous refinement of these assessment methods to improve the reliability and global comparability of cancer registry data.
基于人群的癌症登记对于跟踪癌症趋势、支持研究、指导政策决策以及确保有效的医疗资源分配至关重要。然而，它们的有效性在很大程度上依赖于数据质量，特别是癌症登记过程的完整性。
背景/目的：本系统评价旨在确定全球基于成年人群的癌症登记机构用于评估其数据完整性的方法。它还考虑了高质量数据在方法选择中的重要作用以及数据处理的重大挑战。
在科学网、Scopus和PubMed上对2004年1月至2024年12月发表的研究进行了全面的电子文献检索。该评价按照PRISMA指南撰写，并使用乔安娜·布里格斯研究所工具评估偏倚风险。
该评价确定了来自31个国家的83项研究，其中大多数来自欧洲，尤其是北欧和中欧国家。大多数研究符合高质量标准，只有一项研究得分低于75%。常见方法包括独立病例确定（使用最多）、捕获再捕获分析、仅死亡证明分析以及与历史发病率进行比较。虽然当有高质量辅助来源时独立病例确定很有价值，但其准确性各不相同。其他方法，如捕获再捕获或死亡率与发病率之比，在某些情况下可能更准确或更可行。
研究结果表明，不同登记机构用于完整性评估的方法差异很大，这受到数据质量和地区实践的影响。结果强调了不断完善这些评估方法以提高癌症登记数据的可靠性和全球可比性的重要性。
