Evaluación externa de registros de cáncer de base poblacional: la Guía REDEPICAN para América Latina / External evaluation of population-based cancer registries: the REDEPICAN Guide for Latin America

OBJETIVO: Evaluar la factibilidad y la adecuación de la Guía REDEPICAN (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) a la situación actual de los Registros de Cáncer de Base Poblacional (RCBP) en América Latina y el Caribe como herramienta útil para mejorar dichos registros. MÉTODOS: La Guía fue diseñada por expertos en registros de cáncer y auditorías sanitarias, y se establecieron siete dominios para evaluarla. Para cada dominio se eligieron varios criterios con sus correspondientes estándares. Se determinaron tres niveles de cumplimiento del estándar. Se organizaron dos cursos de formación de evaluadores externos y tres paneles de discusión con expertos. La Guía se probó en seis RCBP de América Latina y España. RESULTADOS: La Guía contiene 68 criterios, 10 de ellos considerados esenciales para un RCBP. De acuerdo con la puntuación alcanzada, el registro se considera como aceptable (41-199), bueno (200-299) o excelente (300-350). El dominio sobre Métodos de registro representa el 25% de la puntuación, seguido por la Exhaustividad y validez (19%), la Difusión de resultados (19%), la Estructura (13%), la Confidencialidad y aspectos éticos (11%), la Comparabilidad (9%) y el Manual de procedimiento (3%). El proyecto piloto permitió: 1) perfeccionar criterios y estándares, 2) ampliar el concepto de calidad para incorporar las necesidades de los clientes y 3) potenciar la sección de Difusión de resultados. Dos registros latinoamericanos evaluados mejoraron su calidad hasta alcanzar el estándar de la Agencia Internacional de Investigación sobre el Cáncer. CONCLUSIONES: La guía REDEPICAN se ha elaborado teniendo en cuenta el contexto de los registros en América Latina y constituye una herramienta útil y novedosa para la mejora de la calidad de los RCBP. Además está preparada para ser utilizada en otros países y registros.

OBJECTIVE: Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. METHODS: Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. RESULTS: The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. CONCLUSIONS: Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.

Trends in prostate cancer survival in Spain: results from population-based cancer registries.

INTRODUCTION: The aim of this study is to analyse the evolution of the survival of patients diagnosed with prostate cancer during the period 1995-2003. MATERIAL AND METHODS: This is a population survival study of incident cases of prostate cancer in four Spanish areas: Basque Country, Girona, Murcia and Navarra. We calculated the relative survival (RS) at 5 years and its 95% confidence intervals using a cohort analysis and adjusted for age. To assess the trend in survival between the periods (1995-1999 and 2000-2003) a Poisson regression model was used, adjusting for age, region and period, obtaining the relative risk of death. RESULTS: The number of patients diagnosed during the 1995- 1999 period was 6493 and 8331 in the period 2000-03. The RS at 5 years adjusted for age increased significantly, from 75.3% (95% CI 73.3-77.2) in the period 1995-99 to 85% (95% CI 83.4-86.4) in the period 2000-03. CONCLUSION: In Spain the survival of patients with prostate cancer has increased significantly from 1999 to 2003, probably due to the advancement in diagnosis produced by the opportunistic screening of prostate-specific antigen (PSA). Differences in the dissemination and use of the PSA level could explain the observed geographic differences in the increase of survival. It would be necessary to carry out studies to quantify the produced overdiagnosis by screening with PSA in prostate cancer.