title: Reduction of population-based cancer survival estimates by trace back of death certificate notifications: an empirical illustration.
abstract: BACKGROUND
  Survival studies using data from population-based cancer registries allow assessing effectiveness of cancer care on a population level. However, population-based cancer registries differ in the proportion of cases first notified by death certificate, as well as in the efforts to trace back such death certificate notifications (DCN). We aimed to assess the impact of such trace back on population-based cancer survival estimates.
  
  
  METHODS
  In this study from the population-based Saarland Cancer Registry (Germany) we investigated the survival experience of successfully traced back DCN cases from 1994 to 2003. Five-year relative survival of patients with DCN cancers and the effect of trace back on population-based 5-year relative survival estimates were analysed by age and tumour site.
  
  
  RESULTS
  Twelve percent of all cancers were DCN and such cases occurred most often amongst sites with poor prognosis and amongst elderly patients. Approximately half of DCN cases could be successfully traced back. Five-year relative survival of patients with DCN cancers with trace back was 2%. The inclusion of DCN cancers with additional registrations reduced the 5-year relative survival estimate for all cancers combined by 4% points. Reductions were stronger for older patients and highly fatal cancers.
  
  
  CONCLUSIONS
  Trace back results in increased inclusion of patients with very poor prognosis. Varying extent of trace back across registries may compromise comparability of cancer survival estimates and should be taken into account in comparative cancer survival studies.
authors.affiliation: Saarland Cancer Registry, Präsident Baltz-Straße 5, 66119 Saarbrücken, Germany. b.holleczek@gbe-ekr.saarland.de
authors.forename: Bernd
authors.initials: B
authors.lastname: Holleczek
authors.forename: Hermann
authors.initials: H
authors.lastname: Brenner
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003644:Death Certificates; D036262:Empirical Research; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality*; D012042:Registries / Q000706:statistics & numerical data; D016019:Survival Analysis; D055815:Young Adult