Cancer epidemiology · 2026
Deterministic linkage for updating vital status and follow-up in the São Paulo hospital-based cancer registry, Brazil: Enhancing the completeness and quality of oncology data.
СтатьяНазвание и аннотация: Перевод в очереди
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Fagundes Marcela de Araújo, Leite Valter Bezerra, Lombardo Valeria, Waldvogel Bernadette Cunha, Morais Lilian Cristina Correia, Perdigao Magaly de Losso, Freitas Rosa Maria Vieira de, Ribeiro Adeylson Guimarães
Аннотация
BACKGROUND: Accurate follow-up of cancer patients is crucial for evaluating outcomes and guiding public health strategies. This study aimed to update follow-up time and identify unregistered deaths in the Hospital-Based Cancer Registry of the State of São Paulo (HBCR/SP) up to 2021, assessing the impact of deterministic linkage on loss to follow-up, mean follow-up time, and 3-year overall survival across cancer types.
METHODS: Records of 688,916 patients with no registered death or with incomplete death date information were linked by the SEADE Foundation to the mortality database of the Civil Registration Statistics System. The linkage process identified 129,362 matched records, which underwent automated and manual validation procedures before incorporation into the HBCR/SP database. Deterministic linkage was performed using personal identifiers, including the Brazilian Individual Taxpayer Registration Number (CPF), the Brazilian National Identity Card (RG), and other demographic identifiers. Analyses examined changes in deaths, follow-up duration, loss to follow-up, and 3-year survival for 10 cancer sites, including variations by Regional Health Department (RHD).
RESULTS: Deaths increased from 496,724 to 550,465 after linkage; in 2021, from 28,211 to 40,740. Thyroid, prostate, breast, melanoma, and non-melanoma skin cancers showed the largest percentage increases. The RHD of Campinas, Presidente Prudente, and Baixada Santista had the greatest gains. Loss to follow-up fell across all regions, and eight of the seventeen regions achieved loss-to-follow-up rates ≤ 10% after linkage. Mean follow-up rose most for thyroid cancer (+14.5 months). Notable reductions in 3-year survival were observed for breast cancer (77%→64%), while other sites showed no significant changes.
CONCLUSION: Deterministic linkage substantially improved follow-up data and death ascertainment in the HBCR/SP, enhancing completeness, reducing loss to follow-up, and supporting more robust epidemiological and survival analyses. This reinforces data integration as an essential tool for cancer research and public health planning in São Paulo.
METHODS: Records of 688,916 patients with no registered death or with incomplete death date information were linked by the SEADE Foundation to the mortality database of the Civil Registration Statistics System. The linkage process identified 129,362 matched records, which underwent automated and manual validation procedures before incorporation into the HBCR/SP database. Deterministic linkage was performed using personal identifiers, including the Brazilian Individual Taxpayer Registration Number (CPF), the Brazilian National Identity Card (RG), and other demographic identifiers. Analyses examined changes in deaths, follow-up duration, loss to follow-up, and 3-year survival for 10 cancer sites, including variations by Regional Health Department (RHD).
RESULTS: Deaths increased from 496,724 to 550,465 after linkage; in 2021, from 28,211 to 40,740. Thyroid, prostate, breast, melanoma, and non-melanoma skin cancers showed the largest percentage increases. The RHD of Campinas, Presidente Prudente, and Baixada Santista had the greatest gains. Loss to follow-up fell across all regions, and eight of the seventeen regions achieved loss-to-follow-up rates ≤ 10% after linkage. Mean follow-up rose most for thyroid cancer (+14.5 months). Notable reductions in 3-year survival were observed for breast cancer (77%→64%), while other sites showed no significant changes.
CONCLUSION: Deterministic linkage substantially improved follow-up data and death ascertainment in the HBCR/SP, enhancing completeness, reducing loss to follow-up, and supporting more robust epidemiological and survival analyses. This reinforces data integration as an essential tool for cancer research and public health planning in São Paulo.