Challenges in assessing the real incidence of chronic lymphocytic leukemia: 16 years of epidemiological data from the province of Girona, Spain

Abstract

Determining chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) incidence is challenging for two reasons: cancer registries tend to underreport CLL cases and its diagnostic criteria changed markedly in 2008. No studies have reported incidence rates dealing with both difficulties, and thus CLL/SLL burden in Europe is currently uncertain. Herein, we present accurate CLL/SLL incidence in a Spanish region during 1998–2013, using the population-based Girona Cancer Registry (GCR). We detected an 18.2% under-reporting of CLL/SLL cases when combining records from the GCR and additional information sources (i.e., records of flow cytometry laboratories, hospital registries and hematologists’ databases). In addition, age-adjusted rates (using the 2013 European population) changed from 7.57 (95% CI 6.87; 8.30) in 1998–2008 to 6.35 (95% CI 5.51; 7.30) in 2009–2013. Overall, completeness of CLL/SLL data requires accurate diagnosis and reporting of cases. Revision of cancer registry operations to include CLL/SLL-specific surveillance is likely to ensure that the monitoring of this malignancy is entirely accurate.

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Acknowledgments

This work was supported by a grant from the Spanish Ministry of Health (FIS PI15/00966) and by CIBERESP (PhD contract to MS).

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Correspondence to Marta Solans.

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Solans, M., Osca-Gelis, G., Comas, R. et al. Challenges in assessing the real incidence of chronic lymphocytic leukemia: 16 years of epidemiological data from the province of Girona, Spain. Cancer Causes Control 29, 379–382 (2018). https://doi.org/10.1007/s10552-018-1004-5

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Keywords

  • Chronic lymphocytic leukemia
  • Incidence
  • Under-reporting
  • 2008 Guidelines
  • Cancer registry