title: European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis.
abstract: Since the earliest days of cystic fibrosis (CF) treatment, patient data have been recorded and reviewed in order to identify the factors that lead to more favourable outcomes. Large data repositories, such as the US Cystic Fibrosis Registry, which was established in the 1960s, enabled successful treatments and patient outcomes to be recognized and improvement programmes to be implemented in specialist CF centres. Over the past decades, the greater volumes of data becoming available through Centre databases and patient registries led to the possibility of making comparisons between different therapies, approaches to care and indeed data recording. The quality of care for individuals with CF has become a focus at several levels: patient, centre, regional, national and international. This paper reviews the quality management and improvement issues at each of these levels with particular reference to indicators of health, the role of CF Centres, regional networks, national health policy, and international data registration and comparisons.
authors.affiliation: University Children's Hospital, Tübingen, Germany. Electronic address: martin.stern@med.uni-tuebingen.de.
authors.forename: Martin
authors.initials: M
authors.lastname: Stern
authors.affiliation: French CF QIP, Paris, France. Electronic address: dominiquepougheon@orange.fr.
authors.forename: Dominique Pougheon
authors.initials: DP
authors.lastname: Bertrand
authors.affiliation: CFF Piemonte, Città della salute e della scienza, Torino, Italy. Electronic address: ebignamini@cittadellasalute.to.it.
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Bignamini
authors.affiliation: Hospital for Sick Children, University of Toronto, Canada. Electronic address: mary.corey@sickkids.ca.
authors.forename: Mary
authors.initials: M
authors.lastname: Corey
authors.affiliation: Mukoviszidose eV, Berlin, Germany. Electronic address: bdembski@muko.info.
authors.forename: Birgit
authors.initials: B
authors.lastname: Dembski
authors.affiliation: Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of Washington Medical Centre, Seattle, WA, USA. Electronic address: Cgoss@medicine.washington.edu.
authors.forename: Christopher H
authors.initials: CH
authors.lastname: Goss
authors.affiliation: CF Center, Rigshospitalet, Copenhagen, Denmark. Electronic address: pressler@mail.dk.
authors.forename: Tanja
authors.initials: T
authors.lastname: Pressler
authors.affiliation: National Expertise CF Center, Nantes-Roscoff, France. Electronic address: gilles.rault@perharidy.fr.
authors.forename: Gilles
authors.initials: G
authors.lastname: Rault
authors.affiliation: Dipartimento di Scienze Cliniche e di Comunità, Università degli Studi di Milano, Milan, Italy. Electronic address: laura.viviani@unimi.it.
authors.forename: Laura
authors.initials: L
authors.lastname: Viviani
authors.affiliation: School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Northern Ireland, UK.
authors.forename: J Stuart
authors.initials: JS
authors.lastname: Elborn
authors.affiliation: Cystic Fibrosis Center, Azienda Ospedaliera Universitaria Integrata, Verona, Italy.
authors.forename: Carlo
authors.initials: C
authors.lastname: Castellani
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000628:therapy*; D005060:Europe; D005260:Female; D006291:Health Policy; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D011787:Quality of Health Care; D012042:Registries; D012955:Societies, Medical; D059039:Standard of Care; D055815:Young Adult
keywords: CF registries; Models of care; Outcomes in CF; Quality management; Standards