title: European Survey on Standards of Care in paediatric oncology centres.
abstract: In recent years, the European Commission has supported an increased focus on rare cancers in order to improve quality of care, disseminate best practice and set up networks to improve access that is essential to continued progress. At European Union (EU) conference in 2009, an agreement was reached to create a 'European Standard of Care for Children with Cancer'. In 2013, the European Paediatric Oncology Society launched a Europe-wide survey in order to assess the implementation of the Standards.
  
  
  
  Representative experts from 36 countries, including 27 EU members, were invited to complete a questionnaire describing the quality of treatment and care received by young cancer patients in their country, together with the characteristics of the health care infrastructure and paediatric haematology-oncology (PHO) teams.
  
  
  
  Thirty-five European countries provided comprehensive responses. Within the responding countries, 341 PHO centres were identified. Only 18 countries consider they have full diagnostic services, all necessary drugs and supportive care. The annual incidence rate is approximately 146.1 new cancer cases/million children and adolescents. In 24 countries, paediatric haematology and oncology is officially recognised as a specific qualification. A total of 1178 specialists certified in PHO are currently working in Europe. Finally, 31 (88.6%) countries provide a multidisciplinary palliative care for terminally ill children.
  
  
  
  This survey provides quantitative data that demonstrate the current healthcare inequalities for children and adolescents with cancer in Europe. This variability in care provision and quality is likely to underlie the variation in childhood cancer survival rate in these countries.
authors.affiliation: Department of Paediatric Haematology, Oncology and Transplantology, Medical University in Lublin, Prof. Gebali 6 Str., 20-093 Lublin, Poland. Electronic address: jkowalcz@dsk.lublin.pl.
authors.forename: Jerzy R
authors.initials: JR
authors.lastname: Kowalczyk
authors.affiliation: Department of Paediatric Haematology, Oncology and Transplantology, Medical University in Lublin, Prof. Gebali 6 Str., 20-093 Lublin, Poland.
authors.forename: Marzena
authors.initials: M
authors.lastname: Samardakiewicz
authors.affiliation: The National Institute for Health Research, Great Ormond Street Hospital, UCL Biomedical Research Centre, Cancer Research UK, 30 Guilford Street, Bloomsbury, London WC1N 1EH, UK.
authors.forename: Kathy
authors.initials: K
authors.lastname: Pritchard-Jones
authors.affiliation: The Children Cancer Research Institute in Vienna, St. Anna's Children's Hospital, Zimmermannplatz 10, 1090 Wien, Austria.
authors.forename: Ruth
authors.initials: R
authors.lastname: Ladenstein
authors.affiliation: The SIOP Europe Office - The European Society for Paediatric Oncology (SIOPE), Avenue E. Mounier 83, B-1200 Brussels, Belgium.
authors.forename: Samira
authors.initials: S
authors.lastname: Essiaf
authors.affiliation: The SIOP Europe Office - The European Society for Paediatric Oncology (SIOPE), Avenue E. Mounier 83, B-1200 Brussels, Belgium.
authors.forename: Edel
authors.initials: E
authors.lastname: Fitzgerald
authors.affiliation: The SIOP Europe Office - The European Society for Paediatric Oncology (SIOPE), Avenue E. Mounier 83, B-1200 Brussels, Belgium.
authors.forename: Giulia
authors.initials: G
authors.lastname: Petrarulo
authors.affiliation: Direction of Clinical Research, The Gustave Roussy and Universite Paris-Sud, 114 Rue Edouard Vaillant, Villejuif 94805, France.
authors.forename: Gilles
authors.initials: G
authors.lastname: Vassal
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003695:Delivery of Health Care / Q000458:organization & administration / Q000592:standards*; D005060:Europe; D005260:Female; D006297:Health Services Accessibility / Q000592:standards; D006801:Humans; D007223:Infant; D008297:Male; D008495:Medical Oncology / Q000592:standards*; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000592:standards; D010372:Pediatrics / Q000458:organization & administration / Q000592:standards*; D059039:Standard of Care
keywords: Paediatric haematology and oncology centres; Standards of Care