ECFS best practice guidelines: the 2018 revision

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dc.contributor.authorCastellani, Carlo
dc.contributor.authorDuff, Alistair J.
dc.contributor.authorBell, Scott C.
dc.contributor.authorHeijerman, Harry G. M.
dc.contributor.authorMunck, Anne
dc.contributor.authorRatjen, Felix
dc.contributor.authorSermet-Gaudelus, Isabelle
dc.contributor.authorSouthern, Kevin W.
dc.contributor.authorBarben, Jurg
dc.contributor.authorFlume, Patrick A.
dc.contributor.authorHodkova, Pavia
dc.contributor.authorKashirskaya, Nataliya
dc.contributor.authorKirszenbaum, Maya N.
dc.contributor.authorMadge, Sue
dc.contributor.authorOxley, Helen
dc.contributor.authorPlant, Barry J.
dc.contributor.authorSchwarzenberg, Sarah Jane
dc.contributor.authorSmyth, Alan R.
dc.contributor.authorTaccetti, Giovanni
dc.contributor.authorWagner, Thomas O. F.
dc.contributor.authorWolfe, Susan P.
dc.contributor.authorDrevinek, Pavel
dc.date.accessioned2018-07-30T10:30:27Z
dc.date.available2018-07-30T10:30:27Z
dc.date.issued2018
dc.description.abstractDevelopments in managing CF continue to drive dramatic improvements in survival. As newborn screening rolls-out across Europe, CF centres are increasingly caring for cohorts of patients who have minimal lung disease on diagnosis. With the introduction of mutation-specific therapies and the prospect of truly personalised medicine, patients have the potential to enjoy good quality of life in adulthood with ever-increasing life expectancy. The landmark Standards of Care published in 2005 set out what high quality CF care is and how it can be delivered throughout Europe. This underwent a fundamental re-write in 2014, resulting in three documents; center framework, quality management and best practice guidelines. This document is a revision of the latter, updating standards for best practice in key aspects of CF care, in the context of a fast-moving and dynamic field. In continuing to give a broad overview of the standards expected for newborn screening, diagnosis, preventative treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support, this consensus on best practice is expected to prove useful to clinical teams both in countries where CF care is developing and those with established CF centres. The document is an ECFS product and endorsed by the CF Network in ERN LUNG and CF Europe. (C) 2018 The Author(s). Published by Elsevier B.V.yyon behalf of European Cystic Fibrosis Society. This is an open access article under the CC BY-NC-ND license.en
dc.description.statusPeer revieweden
dc.description.versionPublished Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationCastellani, C., Duff, A. J. A., Bell, S. C., Heijerman, H. G. M., Munck, A., Ratjen, F., Sermet-Gaudelus, I., Southern, K. W., Barben, J., Flume, P. A., Hodková, P., Kashirskaya, N., Kirszenbaum, M. N., Madge, S., Oxley, H., Plant, B., Schwarzenberg, S. J., Smyth, A. R., Taccetti, G., Wagner, T. O. F., Wolfe, S. P. and Drevinek, P. (2018) 'ECFS best practice guidelines: the 2018 revision', Journal of Cystic Fibrosis, 17(2), pp. 153-178. doi: 10.1016/j.jcf.2018.02.006en
dc.identifier.doi10.1016/j.jcf.2018.02.006
dc.identifier.endpage178
dc.identifier.issn1569-1993
dc.identifier.issued2
dc.identifier.journaltitleJournal of Cystic Fibrosisen
dc.identifier.startpage153
dc.identifier.urihttps://hdl.handle.net/10468/6513
dc.identifier.volume17
dc.language.isoenen
dc.publisherElsevier B.V.en
dc.relation.urihttps://www.sciencedirect.com/science/article/pii/S1569199318300298
dc.rights© 2018, The Authors. Published by Elsevier B.V. on behalf of European Cystic Fibrosis Society. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).en
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectCystic fibrosisen
dc.subjectStandards of careen
dc.subjectMultidisciplinary managementen
dc.subjectBest practiceen
dc.subjectGuidelinesen
dc.subjectConsensusen
dc.titleECFS best practice guidelines: the 2018 revisionen
dc.typeReviewen
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