title: Access to specialized pediatric cancer care in Switzerland.
abstract: BACKGROUND
  Specialized pediatric cancer centers (PCCs) are thought to be essential to obtain state-of-the-art care for children and adolescents. We determined the proportion of childhood cancer patients not treated in a PCC, and described their characteristics and place of treatment.
  
  
  METHODS
  The Swiss Childhood Cancer Registry (SCCR) registers all children treated in Swiss PCCs. The regional cancer registries (covering 14/26 cantons) register all cancer patients of a region. The children of the SCCR with data from 7 regions (11 cantons) were compared, using specialized software for record linkage. All children <16 years of age at diagnosis with primary malignant tumors, diagnosed between 1990 and 2004, and living in one of these regions were included in the analysis.
  
  
  RESULTS
  22.1% (238/1,077) of patients recorded in regional registries were not registered in the SCCR. Of these, 15.7% (169/1,077) had never been in a PCC while 6.4% (69/1,077) had been in a PCC but were not registered in the SCCR, due to incomplete data flow. In all diagnostic groups and in all age groups, a certain proportion of children was treated outside a PCC, but this proportion was largest in children suffering from malignant bone tumors/soft tissue sarcomas and from malignant epithelial neoplasms, and in older children. The proportion of patients treated in a PCC increased over the study period (P < 0.0001).
  
  
  CONCLUSIONS
  One in six childhood cancer patients in Switzerland was not treated in a PCC. Whether these patients have different treatment outcomes remained unclear.
authors.affiliation: Swiss Childhood Cancer Registry, University of Bern, Bern, Switzerland.
authors.forename: Martin
authors.initials: M
authors.lastname: Adam
authors.forename: Nicolas
authors.initials: N
authors.lastname: von der Weid
authors.forename: Gisela
authors.initials: G
authors.lastname: Michel
authors.forename: Marcel
authors.initials: M
authors.lastname: Zwahlen
authors.forename: Jean-Michel
authors.initials: JM
authors.lastname: Lutz
authors.forename: Nicole
authors.initials: N
authors.lastname: Probst-Hensch
authors.forename: Felix
authors.initials: F
authors.lastname: Niggli
authors.forename: Claudia
authors.initials: C
authors.lastname: Kuehni
mesh_terms: D000293:Adolescent; D002173:Cancer Care Facilities / Q000706:statistics & numerical data*; D002648:Child; D002675:Child, Preschool; D005260:Female; D006297:Health Services Accessibility; D006776:Hospitals, Pediatric / Q000706:statistics & numerical data*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016013:Likelihood Functions; D008297:Male; D015999:Multivariate Analysis; D009369:Neoplasms / Q000628:therapy*; D011787:Quality of Health Care; D012042:Registries / Q000706:statistics & numerical data; D013557:Switzerland