Completeness Evaluation of Adult-Population-Based Cancer Registries: A Systematic Review

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.

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.