A mixed-methods study of methodological approaches in population-based cancer registries in the North and South
Abstract
Introduction: Population-based cancer registries (PBCRs) are essential for cancer surveillance; reliable and comparable data depending on both methodological standards and operational organization. While international guidelines define core quality indicators, less is known about how governance structures and registry workflows influence data quality across different healthcare settings. Materials and methods: We conducted a convergent mixed-methods study involving seven PBCRs: six in Colombia and one in Haute-Vienne, France. Breast cancer was used as a model disease. Quantitative analyses evaluated comparability and validity indicators over 2009–2017, including variable completeness, microscopic verification, death-certificate-only cases (DCO), and coding practices. Semi-structured interviews with 16 registry professionals explored governance, data sources, coding procedures, quality control, workforce organization, and operational challenges. Findings were integrated using a joint display approach. Results: Overall, 25,073 breast cancer cases were analyzed. Core incidence variables, including sex, age, diagnosis date, tumor topography, and morphology, were nearly complete across registries. Microscopic verification exceeded 90% in all registries, and DCO proportions remained below 2%. In contrast, TNM staging completeness varied substantially. Interviews revealed that this variability was mainly related to institutional integration, access to clinical records, quality-control procedures, staff organization, and legal frameworks governing data access. All registries used ICD-O-3 coding systems, suggesting that organizational factors influenced data quality beyond classification standards alone. Conclusion and policy implications: PBCR data quality differences were primarily associated with governance and operational factors. Integrating quantitative quality indicators with qualitative assessment of registry organization may guide improvements in institutional integration, clinical data access, workforce capacity, and sustainable governance.
Related
- Social Inequalities, Geographical Accessibility to Care, and Excess Mortality for Patients With Hematological Malignancies in France: Results From French Cancer Registries
- Purkinje cells in eyeblink conditioning: a systematic review of methodological approaches in animal studies
- Breaking the methodological silos: Integrating Mixed-Methods in Multi-Hazard Risk Assessment Lessons learnt from fieldwork in Tenerife
- Characterizing Individual and Population-Level Heterogeneity in Infant BMI Trajectories Using Flexible and Functional Modeling Approaches
- A systematic review of biomass and carbon stock estimation approaches: Methods, uncertainties, and emerging opportunities
BibTeX
@article{tolentinorodriguez2026mixedmethods,
title = {{A mixed-methods study of methodological approaches in population-based cancer registries in the North and South}},
author = {Lisbeth Tolentino-Rodriguez and Sara Luengo and Mariam Fakih and Armando Daniel Cortés Buelvas and Florent Huré-Papaïconomou and Harold Mauricio Casas Cruz and Nelson Enrique Arias Ortiz and Helio Caballero Rojas and Rusvelt Vargas-Moranth and Ana María Cock Botero and Pierre-Marie Preux and Daniells Andrea Erazo Aleman and Véronique Blanquet and Jean Toniolo and Marion Vergonjeanne and Alexis Parenté},
journal = {Journal of Cancer Policy},
year = {2026},
month = sep,
doi = {10.1016/j.jcpo.2026.100788},
url = {https://unilim.hal.science/hal-05754683v1},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - A mixed-methods study of methodological approaches in population-based cancer registries in the North and South
AU - Lisbeth Tolentino-Rodriguez
AU - Sara Luengo
AU - Mariam Fakih
AU - Armando Daniel Cortés Buelvas
AU - Florent Huré-Papaïconomou
AU - Harold Mauricio Casas Cruz
AU - Nelson Enrique Arias Ortiz
AU - Helio Caballero Rojas
AU - Rusvelt Vargas-Moranth
AU - Ana María Cock Botero
AU - Pierre-Marie Preux
AU - Daniells Andrea Erazo Aleman
AU - Véronique Blanquet
AU - Jean Toniolo
AU - Marion Vergonjeanne
AU - Alexis Parenté
PY - 2026
DA - 2026/09/18
JO - Journal of Cancer Policy
DO - 10.1016/j.jcpo.2026.100788
UR - https://unilim.hal.science/hal-05754683v1
AB - Introduction: Population-based cancer registries (PBCRs) are essential for cancer surveillance; reliable and comparable data depending on both methodological standards and operational organization. While international guidelines define core quality indicators, less is known about how governance structures and registry workflows influence data quality across different healthcare settings. Materials and methods: We conducted a convergent mixed-methods study involving seven PBCRs: six in Colombia and one in Haute-Vienne, France. Breast cancer was used as a model disease. Quantitative analyses evaluated comparability and validity indicators over 2009–2017, including variable completeness, microscopic verification, death-certificate-only cases (DCO), and coding practices. Semi-structured interviews with 16 registry professionals explored governance, data sources, coding procedures, quality control, workforce organization, and operational challenges. Findings were integrated using a joint display approach. Results: Overall, 25,073 breast cancer cases were analyzed. Core incidence variables, including sex, age, diagnosis date, tumor topography, and morphology, were nearly complete across registries. Microscopic verification exceeded 90% in all registries, and DCO proportions remained below 2%. In contrast, TNM staging completeness varied substantially. Interviews revealed that this variability was mainly related to institutional integration, access to clinical records, quality-control procedures, staff organization, and legal frameworks governing data access. All registries used ICD-O-3 coding systems, suggesting that organizational factors influenced data quality beyond classification standards alone. Conclusion and policy implications: PBCR data quality differences were primarily associated with governance and operational factors. Integrating quantitative quality indicators with qualitative assessment of registry organization may guide improvements in institutional integration, clinical data access, workforce capacity, and sustainable governance.
SN - 2213-5383
ER -