European Cystic Fibrosis Society standards of care: best practice guidelines

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 patient...

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Main Authors: 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
Format: Article
Published: Elsevier 2014
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Online Access:https://eprints.nottingham.ac.uk/31673/
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author 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
author_facet 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
author_sort Smyth, Alan R.
building Nottingham Research Data Repository
collection Online Access
description 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.
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spelling nottingham-316732020-05-04T20:14:44Z https://eprints.nottingham.ac.uk/31673/ 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 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. Elsevier 2014-05 Article PeerReviewed 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 and Wolfe, Sue (2014) European Cystic Fibrosis Society standards of care: best practice guidelines. Journal of Cystic Fibrosis, 13 (Supp 1). S23-S42. ISSN 1873-5010 Cystic fibrosis; Standards of care; Multidisciplinary management http://www.sciencedirect.com/science/article/pii/S156919931400085X doi:10.1016/j.jcf.2014.03.010 doi:10.1016/j.jcf.2014.03.010
spellingShingle Cystic fibrosis; Standards of care; Multidisciplinary management
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
European Cystic Fibrosis Society standards of care: best practice guidelines
title European Cystic Fibrosis Society standards of care: best practice guidelines
title_full European Cystic Fibrosis Society standards of care: best practice guidelines
title_fullStr European Cystic Fibrosis Society standards of care: best practice guidelines
title_full_unstemmed European Cystic Fibrosis Society standards of care: best practice guidelines
title_short European Cystic Fibrosis Society standards of care: best practice guidelines
title_sort european cystic fibrosis society standards of care: best practice guidelines
topic Cystic fibrosis; Standards of care; Multidisciplinary management
url https://eprints.nottingham.ac.uk/31673/
https://eprints.nottingham.ac.uk/31673/
https://eprints.nottingham.ac.uk/31673/