Death certificate notifications in the Swiss Childhood Cancer Registry

Study Description

Background: Completeness is important in cancer registration. Identifying areas for improvement in registry procedures might help maximising completeness. In this study we examined characteristics of childhood cancer cases that escaped registration procedures during life and were registered via death certificate notification (DCN). Thus we estimated the completeness of the Swiss Childhood Cancer Registry (SCCR).

Methods: We analyzed data from all children, who had died 1985-2008 from cancer in Switzerland at an age of <16 years (N=978), and checked wheatear the children had been registered in the SCCR. We used multivariable logistic regression to compare characteristics of DCN cases with deceased SCCR cases and then used the DC-M:I method to estimate completeness for different diagnostic periods.

Results: Among 978 deceased children with cancer, 126 (12.9%) were registered via DCN. The likelihood of being a DCN case differed by type of tumor, with adjusted odds ratios (95% CI) of 5.3 (1.6-17.3) for liver tumors, 4.4 (1.6-11.9) for endocrine tumors, and 3.1 (1.7-5.4) for brain tumors, compared to leukemia.  Compared to 1-4 year olds, neonates (OR 12.2, 4.6-31.8), infants (OR 7.7; 3.2-18.4) and 14-15 year olds (OR 2.2; 1.1-4.4) were more likely to be DCN cases. The DCN proportion was particularly high in infants who lived in rural regions. Estimated completeness of the SCCR increased from 85% during 1985-89 to 96% during 1995-2009.

Conclusions: The SCCR will improve registration for infants, particularly neonates, and children diagnosed with liver, endocrine and brain tumors. However, overall we found that childhood cancer registration in Switzerland was quite complete.


Expected for 2015

Study team

- Matthias Schindler . Institute of Social and Preventive Medicine, University of Berne
Kuehni, Claudia . Institute of Social and Preventive Medicine, University of Berne
Michel, Gisela. Institute of Social and Preventive Medicine, University of Berne


Swiss National Science Foundation
Swiss Bridge Foundation

Project duration

09.2012 - 08.2015



© ISPM - University of Bern 2016