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European Cystic Fibrosis Society standards of care: best practice guidelines

Smyth, Alan R.; Bell, Scott C.; Bojcin, Snezana; Byron, Mandy; Duff, Alistair; Flume, Patrick; Kashirskaya, Nataliya; Munck, Anne; Ratjen, Felix; Schwarzenberg, Sarah Jane; Sermet-Gaudelus, Isabelle; Southern, Kevin W.; Taccetti, Giovanni; Ullrich, Gerald; Wolfe, Sue

Authors

Alan R. Smyth alan.smyth@nottingham.ac.uk

Scott C. Bell

Snezana Bojcin

Mandy Byron

Alistair Duff

Patrick Flume

Nataliya Kashirskaya

Anne Munck

Felix Ratjen

Sarah Jane Schwarzenberg

Isabelle Sermet-Gaudelus

Kevin W. Southern

Giovanni Taccetti

Gerald Ullrich

Sue Wolfe



Abstract

Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excellent quality of life and an even greater life expectancy than was seen previously. To allow high quality care to be delivered throughout Europe, a landmark document was published in 2005 that sets standards of care. Our current document builds on this work, setting standards for best practice in key aspects of CF care. The objective of our document is to give a broad overview of the standards expected for screening, diagnosis, pre-emptive treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support. For comprehensive details of clinical care of CF, references to the most up to date European Consensus Statements, Guidelines or Position Papers are provided in Table 1. We hope that this best practice document will be useful to clinical teams both in countries where CF care is developing and those with established CF centres.

Journal Article Type Article
Publication Date May 1, 2014
Journal Journal of Cystic Fibrosis
Print ISSN 1569-1993
Electronic ISSN 1873-5010
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 13
Issue Supp 1
Article Number S23-S42
APA6 Citation Smyth, A. R., Bell, S. C., Bojcin, S., Byron, M., Duff, A., Flume, P., …Wolfe, S. (2014). European Cystic Fibrosis Society standards of care: best practice guidelines. Journal of Cystic Fibrosis, 13(Supp 1), doi:10.1016/j.jcf.2014.03.010
DOI https://doi.org/10.1016/j.jcf.2014.03.010
Keywords Cystic fibrosis; Standards of care; Multidisciplinary management
Publisher URL http://www.sciencedirect.com/science/article/pii/S156919931400085X
Copyright Statement Copyright information regarding this work can be found at the following address: http://creativecommons.org/licenses/by-nc-nd/4.0

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Smyth JCF 2014 Best Practice.pdf (309 Kb)
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Copyright Statement
Copyright information regarding this work can be found at the following address: http://creativecommons.org/licenses/by-nc-nd/4.0





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