European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre.

Steven Conway, Ian M Balfour-Lynn, Karleen De Rijcke, Pavel Drevinek, Juliet Foweraker, Trudy Havermans, Harry Heijerman, Louise Lannefors, Anders Lindblad, Milan Macek, Sue Madge, Maeve Moran, Lisa Morrison, Alison Morton, Jacquelien Noordhoek, Dorota Sands, Anneke Vertommen, Daniel Peckham

Journal: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society 2015;13 Suppl 1():S3-22

PMID: 24856776

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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.

Address: Paediatric and Adult CF Units, Leeds Teaching Hospitals Trust, UK. Electronic address: [email protected].; Royal Brompton Hospital, Sydney Street, London, UK.; Cystic Fibrosis Europe, Belgium.; 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.; Department of Microbiology, Papworth Hospital NHS Foundation Trust, Papworth Everard, Cambridge, UK.; Cystic Fibrosis Centre, University Hospital Leuven, Belgium.; HagaZiekenhuis, Department of Pulmonology & Cystic Fibrosis, The Hague, The Netherlands.; Copenhagen CF Centre, Rigshospitalet, University Hospital, Copenhagen, Denmark.; Gothenburg CF Centre, Queen Silvia Children's Hospital, Göteborg, Sweden.; Department of Biology and Medical Genetics, University Hospital Motol, Prague, Czech Republic; Second School of Medicine, Charles University Prague, Prague, Czech Republic.; Department of Respiratory Medicine, Royal Brompton Hospital, Sydney Street, London, UK.; National Referral Centre for Adult Cystic Fibrosis, Pharmacy Department, St. Vincent's University Hospital, Ireland.; Gartnavel General Hospital, West of Scotland Adult CF Unit, Glasgow, UK.; Adult Cystic Fibrosis Unit, St James's Hospital, Leeds, UK.; Dutch Cystic Fibrosis Foundation, The Netherlands.; Department of Pediatrics, Institute of Mother and Child, Warsaw, Poland.

DOI: 10.1016/j.jcf.2014.03.009

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MeSH Terms: Adolescent, Adult, Child, Child, Preschool, Cystic Fibrosis, Europe, Health Services Accessibility, Hospitals, Special, Humans, Patient Care Team, Societies, Medical, Standard of Care, Young Adult