-
Je něco špatně v tomto záznamu ?
Standards for the care of people with cystic fibrosis; establishing and maintaining health
KW. Southern, C. Addy, SC. Bell, A. Bevan, U. Borawska, C. Brown, PR. Burgel, B. Button, C. Castellani, A. Chansard, MA. Chilvers, G. Davies, JC. Davies, K. De Boeck, D. Declercq, M. Doumit, P. Drevinek, I. Fajac, S. Gartner, AM. Georgiopoulos,...
Jazyk angličtina Země Nizozemsko
Typ dokumentu přehledy, časopisecké články
Grantová podpora
MR/T041285/1
Medical Research Council - United Kingdom
Odkazy
PubMed
38129255
DOI
10.1016/j.jcf.2023.12.002
Knihovny.cz E-zdroje
- MeSH
- cystická fibróza * farmakoterapie MeSH
- látky ovlivňující dýchací systém * terapeutické užití MeSH
- lidé MeSH
- mutace MeSH
- protein CFTR genetika MeSH
- systémy dodávající nikotin elektronicky * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
This is the second in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on establishing and maintaining health. The guidance is produced using an evidence-based framework and with wide stakeholder engagement, including people from the CF community. Authors provided a narrative description of their topic and statements, which were more directive. These statements were reviewed by a Delphi exercise, achieving good levels of agreement from a wide group for all statements. This guidance reinforces the importance of a multi-disciplinary CF team, but also describes developing models of care including virtual consultations. The framework for health is reinforced, including the need for a physically active lifestyle and the strict avoidance of all recreational inhalations, including e-cigarettes. Progress with cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy is reviewed, including emerging adverse events and advice for dose reduction and interruption. This paper contains guidance that is pertinent to all people with CF regardless of age and eligibility for and access to modulator therapy.
Assistance Publique Hôpitaux de Paris Université Paris Cité Paris France
Copenhagen CF center Rigshospitalet Copenhagen Denmark
Cork Centre for Cystic Fibrosis Cork University Hospital Cork Ireland
Cystic Fibrosis Centre Pediatric Hospital Dziekanów Leśny Poland
Cystic Fibrosis Department Institute of Mother and Child Warsaw Poland
Cystic Fibrosis Europe Brussels Belgium and the Belgian CF Association Brussels Belgium
Cystic Fibrosis Reference Center Department of Pediatrics Ghent University Hospital Ghent Belgium
Department of Nutrition and Dietetics Royal Alexandra Children's Hospital Brighton UK
Department of Paediatric Respiratory and Sleep Medicine Royal Hospital for Children Glasgow UK
Department of Psychiatry Massachusetts General Hospital Harvard Medical School Boston USA
Department of Respiratory Medicine The Children's Hospital at Westmead Sydney NSW Australia
Department of Women's and Children's Health University of Liverpool Liverpool UK
Divison of Pediatric Respiratroy Medicine BC Childrens Hospital Vancouver Canada
Epidemiology Biostatistics and Prevention Institute University of Zurich Zurich Switzerland
Haga Teaching Hospital Pharmacy The Hague Netherlands
Hospital Necker Enfants Malades AP HP CF centre Université Paris Descartes Paris France
Hospital Universitari Vall d'Hebron Barcelona Spain
Imperial Biomedical Research Centre
IRCCS Istituto Giannina Gaslini Via Gerolamo Gaslini 5 16147 Genova Italy
Medical Center University of Freiburg Pharmacy Hugstetter St 55 Freiburg D 79106 Germany
National Heart and Lung Institute Imperial College London
National Resource Centre for Cystic Fibrosis Oslo University Hospital Oslo Norway
Royal Brompton Hospital Guy's and St Thomas' Trust London UK
Sydney Children's Hospital Australia
The Graub CF Center Pulmonary Institute Schneider Children's Medical Center Petah Tikva Israel
University Hospital Southampton NHS Foundation Trust Southampton United Kingdom
University of Leuven Leuven Belgium
West Midlands Adult CF Centre Heartlands Hospital Birmingham UK
West of Scotland Adult CF Centre Queen Elizabeth University Hospital Glasgow UK
- 000
- 00000naa a2200000 a 4500
- 001
- bmc24007730
- 003
- CZ-PrNML
- 005
- 20240423160219.0
- 007
- ta
- 008
- 240412s2024 ne f 000 0|eng||
- 009
- AR
- 024 7_
- $a 10.1016/j.jcf.2023.12.002 $2 doi
- 035 __
- $a (PubMed)38129255
- 040 __
- $a ABA008 $b cze $d ABA008 $e AACR2
- 041 0_
- $a eng
- 044 __
- $a ne
- 100 1_
- $a Southern, Kevin W $u Department of Women's and Children's Health, University of Liverpool, Liverpool, UK. Electronic address: kwsouth@liv.ac.uk
- 245 10
- $a Standards for the care of people with cystic fibrosis; establishing and maintaining health / $c KW. Southern, C. Addy, SC. Bell, A. Bevan, U. Borawska, C. Brown, PR. Burgel, B. Button, C. Castellani, A. Chansard, MA. Chilvers, G. Davies, JC. Davies, K. De Boeck, D. Declercq, M. Doumit, P. Drevinek, I. Fajac, S. Gartner, AM. Georgiopoulos, S. Gursli, A. Gramegna, CM. Hansen, MJ. Hug, E. Lammertyn, EEC. Landau, R. Langley, N. Mayer-Hamblett, A. Middleton, PG. Middleton, M. Mielus, L. Morrison, A. Munck, B. Plant, M. Ploeger, DP. Bertrand, T. Pressler, BS. Quon, T. Radtke, ZL. Saynor, I. Shufer, AR. Smyth, C. Smith, S. van Koningsbruggen-Rietschel
- 520 9_
- $a This is the second in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on establishing and maintaining health. The guidance is produced using an evidence-based framework and with wide stakeholder engagement, including people from the CF community. Authors provided a narrative description of their topic and statements, which were more directive. These statements were reviewed by a Delphi exercise, achieving good levels of agreement from a wide group for all statements. This guidance reinforces the importance of a multi-disciplinary CF team, but also describes developing models of care including virtual consultations. The framework for health is reinforced, including the need for a physically active lifestyle and the strict avoidance of all recreational inhalations, including e-cigarettes. Progress with cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy is reviewed, including emerging adverse events and advice for dose reduction and interruption. This paper contains guidance that is pertinent to all people with CF regardless of age and eligibility for and access to modulator therapy.
- 650 _2
- $a lidé $7 D006801
- 650 12
- $a cystická fibróza $x farmakoterapie $7 D003550
- 650 12
- $a systémy dodávající nikotin elektronicky $7 D066300
- 650 _2
- $a mutace $7 D009154
- 650 _2
- $a protein CFTR $x genetika $7 D019005
- 650 12
- $a látky ovlivňující dýchací systém $x terapeutické užití $7 D019141
- 655 _2
- $a přehledy $7 D016454
- 655 _2
- $a časopisecké články $7 D016428
- 700 1_
- $a Addy, Charlotte $u All Wales Adult Cystic Fibrosis Centre, University Hospital Llandough, Cardiff and Vale University Health Board, Cardiff, UK
- 700 1_
- $a Bell, Scott C $u Department of Thoracic Medicine and Faculty of Medicine, The University of Queensland, The Prince Charles Hospital, Brisbane, Australia
- 700 1_
- $a Bevan, Amanda $u University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom
- 700 1_
- $a Borawska, Urzula $u Institute of Mother and Child in Warsaw, Cystic Fibrosis Department and Dziekanow Lesny Hospital, Cystic Fibrosis Center, Dziekanow Lesny, Poland
- 700 1_
- $a Brown, Catherine $u West Midlands Adult CF Centre, Heartlands Hospital Birmingham, UK
- 700 1_
- $a Burgel, Pierre-Régis $u Respiratory Medicine and Cystic Fibrosis National Reference Center, Cochin Hospital, Assistance Publique Hôpitaux de Paris (AP-HP) and Université Paris-Cité, Institut Cochin, Inserm U1016, Paris, France
- 700 1_
- $a Button, Brenda $u Department of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia 3181, and Department of Respiratory Medicine, Alfred Health, Melbourne 3004, Australia
- 700 1_
- $a Castellani, Carlo $u IRCCS Istituto Giannina Gaslini, Via Gerolamo Gaslini 5, 16147 Genova, Italy
- 700 1_
- $a Chansard, Audrey $u Epigenetics and Cell Fate Centre, UMR7216 CNRS, Université Paris Cité, Paris, France, and Cystic Fibrosis Europe, Brussels, Belgium
- 700 1_
- $a Chilvers, Mark A $u Divison of Pediatric Respiratroy Medicine, BC Childrens Hospital, Vancouver, Canada
- 700 1_
- $a Davies, Gwyneth $u Population, Policy and Practice Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK
- 700 1_
- $a Davies, Jane C $u National Heart & Lung Institute, Imperial College London; Imperial Biomedical Research Centre; Royal Brompton Hospital, Guy's & St Thomas' Trust, London, UK
- 700 1_
- $a De Boeck, Kris $u University of Leuven, Leuven, Belgium
- 700 1_
- $a Declercq, Dimitri $u Cystic Fibrosis Reference Center, Department of Pediatrics, Ghent University Hospital, Ghent, Belgium; Department of Pediatrics, Center for children and adolescents with diabetes, Ghent University Hospital, Ghent, Belgium; Department of Internal Medicine and Paediatrics, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium
- 700 1_
- $a Doumit, Michael $u Sydney Children's Hospital, Australia
- 700 1_
- $a Drevinek, Pavel $u Department of Medical Microbiology, Second Faculty of Medicine, Motol University Hospital, Charles University, Prague, Czech Republic
- 700 1_
- $a Fajac, Isabelle $u Assistance Publique - Hôpitaux de Paris, Université Paris Cité, Paris, France
- 700 1_
- $a Gartner, Silvia $u Hospital Universitari Vall d'Hebron, Barcelona, Spain
- 700 1_
- $a Georgiopoulos, Anna M $u Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, USA
- 700 1_
- $a Gursli, Sandra $u National Resource Centre for Cystic Fibrosis, Oslo University Hospital, Oslo, Norway
- 700 1_
- $a Gramegna, Andrea $u Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Respiratory Unit and Adult Cystic Fibrosis Center, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy
- 700 1_
- $a Hansen, Carina Me $u Department of Clinical Pharmacy & Pharmacology, University Medical Center Groningen (UMCG), University of Groningen, Groningen, the Netherlands
- 700 1_
- $a Hug, Martin J $u Medical Center - University of Freiburg, Pharmacy, Hugstetter St. 55, Freiburg, D-79106, Germany
- 700 1_
- $a Lammertyn, Elise $u Cystic Fibrosis Europe, Brussels, Belgium and the Belgian CF Association, Brussels, Belgium
- 700 1_
- $a Landau, Edwina Eddie C $u The Graub CF Center, Pulmonary Institute, Schneider Children's Medical Center, Petah Tikva, Israel
- 700 1_
- $a Langley, Ross $u Department of Paediatric Respiratory & Sleep Medicine, Royal Hospital for Children, Glasgow, UK
- 700 1_
- $a Mayer-Hamblett, Nicole $u Seattle Children's Research Institute, Seattle, WA and Department of Pediatrics, University of Washington, Seattle, Wa, USA
- 700 1_
- $a Middleton, Anna $u Department of Respiratory Medicine, The Children's Hospital at Westmead, Sydney, NSW, Australia
- 700 1_
- $a Middleton, Peter G $u Westmead Clinical School, University of Sydney and CITRICA, Dept Respiratory & Sleep Medicine, Westmead Hospital, Westmead, Australia
- 700 1_
- $a Mielus, Monika $u Cystic Fibrosis Department, Institute of Mother and Child, Warsaw, Poland; Cystic Fibrosis Centre, Pediatric Hospital, Dziekanów Leśny, Poland
- 700 1_
- $a Morrison, Lisa $u West of Scotland Adult CF Centre, Queen Elizabeth University Hospital, Glasgow, UK
- 700 1_
- $a Munck, Anne $u Hospital Necker Enfants-Malades, AP-HP, CF centre, Université Paris Descartes, Paris, France
- 700 1_
- $a Plant, Barry $u Cork Centre for Cystic Fibrosis (3CF), Cork University Hospital, Cork, Ireland
- 700 1_
- $a Ploeger, Maarten $u Haga Teaching Hospital, Pharmacy, The Hague, Netherlands
- 700 1_
- $a Bertrand, Dominique Pougheon $u Laboratoire Educations et Promotion de la santé, LEPS, UR 3412, University of Sorbonne Paris Nord, F-93430, Villetaneuse, France
- 700 1_
- $a Pressler, Tacjana $u Copenhagen CF center, Rigshospitalet, Copenhagen, Denmark
- 700 1_
- $a Quon, Bradley S $u Division of Respiratory Medicine, Department of Medicine. St. Paul's Hospital and the University of British Columbia. Vancouver, British Columbia, Canada
- 700 1_
- $a Radtke, Thomas $u Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
- 700 1_
- $a Saynor, Zoe L $u Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Science, Faculty of Science and Health, University of Portsmouth, UK and Wessex Cystic Fibrosis Unit, University Hospitals Southampton NHS Foundation Trust, UK
- 700 1_
- $a Shufer, Ilan $u CF Patient, Head of Access, Off label and Trials, Computer Science Architecture, Research and Innovation, Cystic Fibrosis Foundation of Israel, Israel
- 700 1_
- $a Smyth, Alan R $u School of Medicine, Dentistry and Biomedical Sciences, Queens University Belfast, Belfast and NIHR Nottingham Biomedical Research Centre, Nottingham, UK
- 700 1_
- $a Smith, Chris $u Department of Nutrition and Dietetics, Royal Alexandra Children's Hospital, Brighton, UK
- 700 1_
- $a van Koningsbruggen-Rietschel, Silke $u CF Center Cologne, Children ́s Hospital, Faculty of Medicine, University Hospital Cologne, Cologne, Germany
- 773 0_
- $w MED00006892 $t Journal of cystic fibrosis $x 1873-5010 $g Roč. 23, č. 1 (2024), s. 12-28
- 856 41
- $u https://pubmed.ncbi.nlm.nih.gov/38129255 $y Pubmed
- 910 __
- $a ABA008 $b sig $c sign $y - $z 0
- 990 __
- $a 20240412 $b ABA008
- 991 __
- $a 20240423160215 $b ABA008
- 999 __
- $a ok $b bmc $g 2081610 $s 1217497
- BAS __
- $a 3
- BAS __
- $a PreBMC-MEDLINE
- BMC __
- $a 2024 $b 23 $c 1 $d 12-28 $e 20231221 $i 1873-5010 $m Journal of cystic fibrosis $n J Cyst Fibros $x MED00006892
- GRA __
- $a MR/T041285/1 $p Medical Research Council $2 United Kingdom
- LZP __
- $a Pubmed-20240412