Data quality in Brazilian population-based cancer registries for gastrointestinal cancers

Abstract

Abstract Background Population-based cancer registries (PBCRs) are the primary source of information for cancer surveillance and monitoring. Currently, there are 30 active PBCRs in Brazil. The objective of this study was to analyze the data quality of five gastrointestinal cancers (esophagus, stomach, colorectal, liver, and pancreas) according to the criteria of comparability, validity, completeness, and timeliness in Brazilian cancer registries. Methods This study included data from Brazilian PBCRs with more than ten years of historical data starting in the year 2000, regardless of the type of defined geographical coverage (state, metropolitan region, or capital), totaling 16 registries. Brazilian PBCRs were evaluated based on four international data quality criteria: comparability, validity (accuracy), completeness, and timeliness. All cancer cases were analyzed, except for nonmelanoma skin cancer cases (C44) and five gastrointestinal tumors (esophageal cancer, stomach cancer, colorectal cancer, liver cancer, and pancreatic cancer) per cancer registry and sex, according to the available period. Results The 16 Brazilian PBCRs represent 17% of the population (36 million inhabitants in 2021) according to data from 2000 to 2018. There was a variation in the incidence in the historical series ranging from 12 to 19 years. The proportion of morphologically verified (MV%) cases varied from 74.3% (Manaus) to 94.8% (Aracaju), and the proportion of incidentally reported death certificate only (DCO%) cases varied from 3.0% (São Paulo) to 23.9% (Espírito Santo). High-lethality malignant neoplasms, such as liver and pancreas, had DCO percentages greater than 30% in most cancer registries. The sixteen registries have more than a 48-month delay in data release compared to the 2022 calendar year. Conclusion The studied Brazilian cancer registries met international comparability criteria; however, half of the registries showed indices below the expected levels for validity and completeness criteria for high-lethality tumors such as liver and pancreas tumors, in addition to a long delay in data availability and disclosure. Significant efforts are necessary to ensure the operational and stability of the PBCR in Brazil, which continues to be a tool for monitoring cancer incidence and assessing national cancer control policies.