title: European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre.
abstract: A significant increase in life expectancy in successive birth cohorts of people with cystic fibrosis (CF) is a result of more effective treatment for the disease. It is also now widely recognized that outcomes for patients cared for in specialist CF Centres are better than for those who are not. Key to the effectiveness of the specialist CF Centre is the multidisciplinary team (MDT), which should include consultants, clinical nurse specialist, microbiologist, physiotherapist, dietitian, pharmacist, clinical psychologist, social worker, clinical geneticist and allied healthcare professionals, all of whom should be experienced in CF care. Members of the MDT are also expected to keep up to date with developments in CF through continued professional development, attendance at conferences, auditing and involvement in research. Specialists CF Centres should also network with other Centres both nationally and internationally, and feed Centre data to registries in order to further the understanding of the disease. This paper provides a framework for the specialist CF Centre, including the organisation of the Centre and the individual roles of MDT members, as well as highlighting the value of CF organisations and disease registries.
authors.affiliation: Paediatric and Adult CF Units, Leeds Teaching Hospitals Trust, UK. Electronic address: steven.conway@doctors.net.uk.
authors.forename: Steven
authors.initials: S
authors.lastname: Conway
authors.affiliation: Royal Brompton Hospital, Sydney Street, London, UK.
authors.forename: Ian M
authors.initials: IM
authors.lastname: Balfour-Lynn
authors.affiliation: Cystic Fibrosis Europe, Belgium.
authors.forename: Karleen
authors.initials: K
authors.lastname: De Rijcke
authors.affiliation: Department of Medical Microbiology, 2nd Faculty of Medicine, Charles University, Prague, Czech Republic; Department of Paediatrics, 2nd Faculty of Medicine, Charles University, Prague, Czech Republic; University Hospital Motol, Prague, Czech Republic.
authors.forename: Pavel
authors.initials: P
authors.lastname: Drevinek
authors.affiliation: Department of Microbiology, Papworth Hospital NHS Foundation Trust, Papworth Everard, Cambridge, UK.
authors.forename: Juliet
authors.initials: J
authors.lastname: Foweraker
authors.affiliation: Cystic Fibrosis Centre, University Hospital Leuven, Belgium.
authors.forename: Trudy
authors.initials: T
authors.lastname: Havermans
authors.affiliation: HagaZiekenhuis, Department of Pulmonology & Cystic Fibrosis, The Hague, The Netherlands.
authors.forename: Harry
authors.initials: H
authors.lastname: Heijerman
authors.affiliation: Copenhagen CF Centre, Rigshospitalet, University Hospital, Copenhagen, Denmark.
authors.forename: Louise
authors.initials: L
authors.lastname: Lannefors
authors.affiliation: Gothenburg CF Centre, Queen Silvia Children's Hospital, Göteborg, Sweden.
authors.forename: Anders
authors.initials: A
authors.lastname: Lindblad
authors.affiliation: Department of Biology and Medical Genetics, University Hospital Motol, Prague, Czech Republic; Second School of Medicine, Charles University Prague, Prague, Czech Republic.
authors.forename: Milan
authors.initials: M
authors.lastname: Macek
authors.affiliation: Department of Respiratory Medicine, Royal Brompton Hospital, Sydney Street, London, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Madge
authors.affiliation: National Referral Centre for Adult Cystic Fibrosis, Pharmacy Department, St. Vincent's University Hospital, Ireland.
authors.forename: Maeve
authors.initials: M
authors.lastname: Moran
authors.affiliation: Gartnavel General Hospital, West of Scotland Adult CF Unit, Glasgow, UK.
authors.forename: Lisa
authors.initials: L
authors.lastname: Morrison
authors.affiliation: Adult Cystic Fibrosis Unit, St James's Hospital, Leeds, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Morton
authors.affiliation: Dutch Cystic Fibrosis Foundation, The Netherlands.
authors.forename: Jacquelien
authors.initials: J
authors.lastname: Noordhoek
authors.affiliation: Department of Pediatrics, Institute of Mother and Child, Warsaw, Poland.
authors.forename: Dorota
authors.initials: D
authors.lastname: Sands
authors.affiliation: Cystic Fibrosis Centre, University Hospital Leuven, Belgium.
authors.forename: Anneke
authors.initials: A
authors.lastname: Vertommen
authors.affiliation: Adult Cystic Fibrosis Unit, St James's Hospital, Leeds, UK.
authors.forename: Daniel
authors.initials: D
authors.lastname: Peckham
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000150:complications / Q000175:diagnosis / Q000628:therapy*; D005060:Europe; D006297:Health Services Accessibility / Q000458:organization & administration*; D006782:Hospitals, Special / Q000458:organization & administration*; D006801:Humans; D010348:Patient Care Team / Q000458:organization & administration*; D012955:Societies, Medical; D059039:Standard of Care; D055815:Young Adult
keywords: CF Centre; Continuing professional development; Multidisciplinary team