Maarit K Leinonen1, Joonas Miettinen2, Sanna Heikkinen2, Janne Pitkäniemi2, Nea Malila2. 1. Finnish Cancer Registry, Cancer Society of Finland, Unioninkatu 22, FI-00130 Helsinki, Finland. Electronic address: maarit.leinonen@cancer.fi. 2. Finnish Cancer Registry, Cancer Society of Finland, Unioninkatu 22, FI-00130 Helsinki, Finland.
Abstract
BACKGROUND: The Finnish Cancer Registry (FCR) has collected population-based data on cancer incidence for scientific research and statistical purposes since 1953. Our aim was to provide a comprehensive quality assessment of the current cancer registry data in Finland. METHODS: We used established quantitative and semi-quantitative techniques to address four main dimensions of data quality: completeness, comparability, validity and timeliness for the period 1953-2013, with a special focus on cancers diagnosed in 2009-2013. For completeness, hospital admissions and outpatient visits were used as an independent data source. RESULTS: In 2009-2013, 153 147 incident tumours were registered in the FCR. Of them, 91% were solid tumours. The completeness for all solid tumours was estimated at 96%, and for non-solid tumours at 86%. Potential underreporting was most prominent for tumours which are not typically histologically verified such as haematological malignancies and non-malignant tumours of the central nervous system. Of all cancers, 93% were morphologically verified, with variation by primary site. The proportion of cancers with uncertain or ill-defined primary site and the proportion of death certificate only registrations were both low at 1.9% and 2.6%, respectively. CONCLUSIONS: The FCR provides overall accurate and close to complete national cancer data for solid malignant tumours. Registration of tumours with no histology is still compromised. This warrants continuous communication with clinicians to ensure undisturbed data flow, and active trace-back using external data sources such as hospital administrative data. In addition, broad diagnosis categories would be less sensitive to diversity of input and data quality when international comparisons are made.
BACKGROUND: The Finnish Cancer Registry (FCR) has collected population-based data on cancer incidence for scientific research and statistical purposes since 1953. Our aim was to provide a comprehensive quality assessment of the current cancer registry data in Finland. METHODS: We used established quantitative and semi-quantitative techniques to address four main dimensions of data quality: completeness, comparability, validity and timeliness for the period 1953-2013, with a special focus on cancers diagnosed in 2009-2013. For completeness, hospital admissions and outpatient visits were used as an independent data source. RESULTS: In 2009-2013, 153 147 incident tumours were registered in the FCR. Of them, 91% were solid tumours. The completeness for all solid tumours was estimated at 96%, and for non-solid tumours at 86%. Potential underreporting was most prominent for tumours which are not typically histologically verified such as haematological malignancies and non-malignant tumours of the central nervous system. Of all cancers, 93% were morphologically verified, with variation by primary site. The proportion of cancers with uncertain or ill-defined primary site and the proportion of death certificate only registrations were both low at 1.9% and 2.6%, respectively. CONCLUSIONS: The FCR provides overall accurate and close to complete national cancer data for solid malignant tumours. Registration of tumours with no histology is still compromised. This warrants continuous communication with clinicians to ensure undisturbed data flow, and active trace-back using external data sources such as hospital administrative data. In addition, broad diagnosis categories would be less sensitive to diversity of input and data quality when international comparisons are made.
Authors: Stephanie J Weinstein; Alison M Mondul; Kai Yu; Tracy M Layne; Christian C Abnet; Neal D Freedman; Racheal Z Stolzenberg-Solomon; Unhee Lim; Mitchell H Gail; Demetrius Albanes Journal: Eur J Epidemiol Date: 2018-08-02 Impact factor: 8.082
Authors: Britton Trabert; Rebecca Troisi; Tom Grotmol; Anders Ekbom; Anders Engeland; Mika Gissler; Ingrid Glimelius; Laura Madanat-Harjuoja; Henrik Toft Sørensen; Steinar Tretli; Anne Gulbech Ording; Tone Bjørge Journal: Int J Cancer Date: 2019-06-20 Impact factor: 7.316
Authors: Rebecca Troisi; Anne Gulbech Ording; Tom Grotmol; Ingrid Glimelius; Anders Engeland; Mika Gissler; Britton Trabert; Anders Ekbom; Laura Madanat-Harjuoja; Henrik Toft Sørensen; Steinar Tretli; Tone Bjørge Journal: Int J Cancer Date: 2018-08-10 Impact factor: 7.396
Authors: Laura K Seppälä; Laura-Maria Madanat-Harjuoja; Rebecca Troisi; Joshua N Sampson; Maarit K Leinonen; Kim Vettenranta Journal: Acta Paediatr Date: 2021-03-08 Impact factor: 4.056
Authors: Rachael Williams; Tjeerd-Pieter van Staa; Arlene M Gallagher; Tarek Hammad; Hubert G M Leufkens; Frank de Vries Journal: BMJ Open Date: 2018-05-26 Impact factor: 2.692