title: Quality of haemophilia care in The Netherlands: new standards for optimal care.
abstract: BACKGROUND
  In the Netherlands, the first formal haemophilia comprehensive care centre was established in 1964, and Dutch haemophilia doctors have been organised since 1972. Although several steps were taken to centralise haemophilia care and maintain quality of care, treatment was still delivered in many hospitals, and formal criteria for haemophilia treatment centres as well as a national haemophilia registry were lacking.
  
  
  METHODS
  In collaboration with patients and other stakeholders, Dutch haemophilia doctors have undertaken a formal process to draft new quality standards for the haemophilia treatment centres. First a project group including doctors, nurses, patients and the institute for harmonisation of quality standards undertook a literature study on quality standards and performed explorative visits to several haemophilia treatment centres in the Netherlands. Afterwards concept standards were defined and validated in two treatment centres. Next, the concept standards were evaluated by haemophilia doctors, patients, health insurance representatives and regulators. Finally, the final version of the standards of care was approved by Central body of Experts on quality standards in clinical care and the Dutch Ministry of Health.
  
  
  RESULTS
  A team of expert auditors have been trained and, together with an independent auditor, will perform audits in haemophilia centres applying for formal certification. Concomitantly, a national registry for haemophilia and allied disorders is being set up.
  
  
  CONCLUSIONS
  It is expected that these processes will lead to further concentration and improved quality of haemophilia care in the Netherlands.
authors.affiliation: Erasmus University Medical Centre, Rotterdam, the Netherlands.
authors.forename: Frank W G
authors.initials: FW
authors.lastname: Leebeek
authors.affiliation: Van Creveldkliniek, University Medical Centre Utrecht, Utrecht, the Netherlands Julius Center for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, the Netherlands.
authors.forename: Kathelijn
authors.initials: K
authors.lastname: Fischer
mesh_terms: D003695:Delivery of Health Care / Q000266:history / Q000379:methods / Q000458:organization & administration / Q000592:standards*; D006467:Hemophilia A / Q000266:history / Q000628:therapy*; D049673:History, 20th Century; D049674:History, 21st Century; D006801:Humans; D008297:Male; D008485:Medical Audit; D009426:Netherlands; D011785:Quality Assurance, Health Care / Q000266:history / Q000379:methods / Q000458:organization & administration / Q000592:standards*; D012042:Registries