European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.
Identifieur interne : 001A52 ( Ncbi/Merge ); précédent : 001A51; suivant : 001A53European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.
Auteurs : Alan R. Smyth [Royaume-Uni] ; Scott C. Bell [Australie] ; Snezana Bojcin ; Mandy Bryon [Royaume-Uni] ; Alistair Duff [Royaume-Uni] ; Patrick Flume [États-Unis] ; Nataliya Kashirskaya [Russie] ; Anne Munck [France] ; Felix Ratjen [Canada] ; Sarah Jane Schwarzenberg [États-Unis] ; Isabelle Sermet-Gaudelus [France] ; Kevin W. Southern [Royaume-Uni] ; Giovanni Taccetti [Italie] ; Gerald Ullrich [Allemagne] ; Sue Wolfe [Royaume-Uni]Source :
- Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [ 1873-5010 ] ; 2014.
Descripteurs français
- KwdFr :
- Accessibilité des services de santé (organisation et administration), Adolescent, Adulte, Enfant, Enfant d'âge préscolaire, Europe, Femelle, Humains, Jeune adulte, Mucoviscidose (), Mucoviscidose (diagnostic), Mâle, Norme de soins (organisation et administration), Nourrisson, Nouveau-né, Soins terminaux (organisation et administration), Soutien social, Transplantation pulmonaire.
- MESH :
- diagnostic : Mucoviscidose.
- organisation et administration : Accessibilité des services de santé, Norme de soins, Soins terminaux.
- Adolescent, Adulte, Enfant, Enfant d'âge préscolaire, Europe, Femelle, Humains, Jeune adulte, Mucoviscidose, Mâle, Nourrisson, Nouveau-né, Soutien social, Transplantation pulmonaire.
English descriptors
- KwdEn :
- Adolescent, Adult, Child, Child, Preschool, Cystic Fibrosis (complications), Cystic Fibrosis (diagnosis), Cystic Fibrosis (therapy), Europe, Female, Health Services Accessibility (organization & administration), Humans, Infant, Infant, Newborn, Lung Transplantation, Male, Social Support, Standard of Care (organization & administration), Terminal Care (organization & administration), Young Adult.
- MESH :
- geographic : Europe.
- complications : Cystic Fibrosis.
- diagnosis : Cystic Fibrosis.
- organization & administration : Health Services Accessibility, Standard of Care, Terminal Care.
- therapy : Cystic Fibrosis.
- Adolescent, Adult, Child, Child, Preschool, Female, Humans, Infant, Infant, Newborn, Lung Transplantation, Male, Social Support, Young Adult.
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.
DOI: 10.1016/j.jcf.2014.03.010
PubMed: 24856775
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pubmed:24856775Le document en format XML
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<author><name sortKey="Wolfe, Sue" sort="Wolfe, Sue" uniqKey="Wolfe S" first="Sue" last="Wolfe">Sue Wolfe</name>
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<author><name sortKey="Bojcin, Snezana" sort="Bojcin, Snezana" uniqKey="Bojcin S" first="Snezana" last="Bojcin">Snezana Bojcin</name>
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<wicri:noCountry code="subField">Republic of Macedonia</wicri:noCountry>
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<author><name sortKey="Bryon, Mandy" sort="Bryon, Mandy" uniqKey="Bryon M" first="Mandy" last="Bryon">Mandy Bryon</name>
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<author><name sortKey="Duff, Alistair" sort="Duff, Alistair" uniqKey="Duff A" first="Alistair" last="Duff">Alistair Duff</name>
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<wicri:regionArea>Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS</wicri:regionArea>
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<author><name sortKey="Flume, Patrick" sort="Flume, Patrick" uniqKey="Flume P" first="Patrick" last="Flume">Patrick Flume</name>
<affiliation wicri:level="2"><nlm:affiliation>Medical University of South Carolina, Charleston, SC, USA.</nlm:affiliation>
<country xml:lang="fr">États-Unis</country>
<wicri:regionArea>Medical University of South Carolina, Charleston, SC</wicri:regionArea>
<placeName><region type="state">Caroline du Sud</region>
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<author><name sortKey="Kashirskaya, Nataliya" sort="Kashirskaya, Nataliya" uniqKey="Kashirskaya N" first="Nataliya" last="Kashirskaya">Nataliya Kashirskaya</name>
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<author><name sortKey="Munck, Anne" sort="Munck, Anne" uniqKey="Munck A" first="Anne" last="Munck">Anne Munck</name>
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<author><name sortKey="Ratjen, Felix" sort="Ratjen, Felix" uniqKey="Ratjen F" first="Felix" last="Ratjen">Felix Ratjen</name>
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<country xml:lang="fr">Canada</country>
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<author><name sortKey="Schwarzenberg, Sarah Jane" sort="Schwarzenberg, Sarah Jane" uniqKey="Schwarzenberg S" first="Sarah Jane" last="Schwarzenberg">Sarah Jane Schwarzenberg</name>
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<author><name sortKey="Sermet Gaudelus, Isabelle" sort="Sermet Gaudelus, Isabelle" uniqKey="Sermet Gaudelus I" first="Isabelle" last="Sermet-Gaudelus">Isabelle Sermet-Gaudelus</name>
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<country xml:lang="fr">France</country>
<wicri:regionArea>INSERM U1151, France; Université René Descartes Paris 5, France; Unité fonctionnelle de Mucoviscidose, Service de Pneumo-Pédiatrie, Hôpital Necker-Enfants Malades, 149 rue de Sèvres, 75743, Paris</wicri:regionArea>
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<author><name sortKey="Southern, Kevin W" sort="Southern, Kevin W" uniqKey="Southern K" first="Kevin W" last="Southern">Kevin W. Southern</name>
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<author><name sortKey="Taccetti, Giovanni" sort="Taccetti, Giovanni" uniqKey="Taccetti G" first="Giovanni" last="Taccetti">Giovanni Taccetti</name>
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<country xml:lang="fr">Italie</country>
<wicri:regionArea>Institute of Child Health, Alder Hey Children's Hospital, Eaton Road, Liverpool L12 2AP, UK; Cystic Fibrosis Centre, Department of Paediatric Medicine, Anna Meyer Children's University Hospital, Florence</wicri:regionArea>
<wicri:noRegion>Florence</wicri:noRegion>
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<author><name sortKey="Ullrich, Gerald" sort="Ullrich, Gerald" uniqKey="Ullrich G" first="Gerald" last="Ullrich">Gerald Ullrich</name>
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<country xml:lang="fr">Allemagne</country>
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<wicri:noRegion>19055, Schwerin</wicri:noRegion>
<wicri:noRegion>19055, Schwerin</wicri:noRegion>
<wicri:noRegion>Schwerin</wicri:noRegion>
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<author><name sortKey="Wolfe, Sue" sort="Wolfe, Sue" uniqKey="Wolfe S" first="Sue" last="Wolfe">Sue Wolfe</name>
<affiliation wicri:level="1"><nlm:affiliation>Paediatric Cystic Fibrosis, Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Paediatric Cystic Fibrosis, Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS</wicri:regionArea>
<wicri:noRegion>Leeds LS2 9NS</wicri:noRegion>
</affiliation>
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<series><title level="j">Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society</title>
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<term>Adult</term>
<term>Child</term>
<term>Child, Preschool</term>
<term>Cystic Fibrosis (complications)</term>
<term>Cystic Fibrosis (diagnosis)</term>
<term>Cystic Fibrosis (therapy)</term>
<term>Europe</term>
<term>Female</term>
<term>Health Services Accessibility (organization & administration)</term>
<term>Humans</term>
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<term>Infant, Newborn</term>
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<term>Standard of Care (organization & administration)</term>
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<term>Transplantation pulmonaire</term>
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<front><div type="abstract" xml:lang="en">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.</div>
</front>
</TEI>
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<DateCreated><Year>2014</Year>
<Month>05</Month>
<Day>26</Day>
</DateCreated>
<DateCompleted><Year>2015</Year>
<Month>01</Month>
<Day>15</Day>
</DateCompleted>
<DateRevised><Year>2017</Year>
<Month>11</Month>
<Day>10</Day>
</DateRevised>
<Article PubModel="Print"><Journal><ISSN IssnType="Electronic">1873-5010</ISSN>
<JournalIssue CitedMedium="Internet"><Volume>13 Suppl 1</Volume>
<PubDate><Year>2014</Year>
<Month>May</Month>
</PubDate>
</JournalIssue>
<Title>Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society</Title>
<ISOAbbreviation>J. Cyst. Fibros.</ISOAbbreviation>
</Journal>
<ArticleTitle>European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.</ArticleTitle>
<Pagination><MedlinePgn>S23-42</MedlinePgn>
</Pagination>
<ELocationID EIdType="doi" ValidYN="Y">10.1016/j.jcf.2014.03.010</ELocationID>
<ELocationID EIdType="pii" ValidYN="Y">S1569-1993(14)00085-X</ELocationID>
<Abstract><AbstractText>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.</AbstractText>
<CopyrightInformation>Copyright © 2014 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.</CopyrightInformation>
</Abstract>
<AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Smyth</LastName>
<ForeName>Alan R</ForeName>
<Initials>AR</Initials>
<AffiliationInfo><Affiliation>Division of Child Health, Obstetrics & Gynaecology (COG), School of Medicine, University of Nottingham, UK. Electronic address: Alan.Smyth@nottingham.ac.uk.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Bell</LastName>
<ForeName>Scott C</ForeName>
<Initials>SC</Initials>
<AffiliationInfo><Affiliation>Department of Thoracic Medicine, The Prince Charles Hospital, Australia; Queensland Children's Medical Research Institute, Brisbane, Australia.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Bojcin</LastName>
<ForeName>Snezana</ForeName>
<Initials>S</Initials>
<AffiliationInfo><Affiliation>Cystic Fibrosis Europe, Denmark; Macedonian Cystic Fibrosis Association, Misko Mihajlovski 15, 1000 Skopje, Republic of Macedonia.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Bryon</LastName>
<ForeName>Mandy</ForeName>
<Initials>M</Initials>
<AffiliationInfo><Affiliation>Cystic Fibrosis Unit, Great Ormond Street Hospital for Children, London, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Duff</LastName>
<ForeName>Alistair</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Flume</LastName>
<ForeName>Patrick</ForeName>
<Initials>P</Initials>
<AffiliationInfo><Affiliation>Medical University of South Carolina, Charleston, SC, USA.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Kashirskaya</LastName>
<ForeName>Nataliya</ForeName>
<Initials>N</Initials>
<AffiliationInfo><Affiliation>Department of Cystic Fibrosis, Research Centre for Medical Genetics, RAMS, Moscow, Russia.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Munck</LastName>
<ForeName>Anne</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>Assistance publique-Hôpitaux de Paris, Hôpital Robert Debré, Paediatric Gastroenterology and Respiratory Department, CF Centre, Université Paris 7, 75019, Paris, France; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE), France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Ratjen</LastName>
<ForeName>Felix</ForeName>
<Initials>F</Initials>
<AffiliationInfo><Affiliation>Division of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Canada; Physiology and Experimental Medicine, Research Institute, The Hospital for Sick Children, University of Toronto, Canada.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Schwarzenberg</LastName>
<ForeName>Sarah Jane</ForeName>
<Initials>SJ</Initials>
<AffiliationInfo><Affiliation>Pediatric Gastroenterology, Hepatology, and Nutrition, University of Minnesota, Amplatz Children's Hospital, Minneapolis, MN, USA.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Sermet-Gaudelus</LastName>
<ForeName>Isabelle</ForeName>
<Initials>I</Initials>
<AffiliationInfo><Affiliation>INSERM U1151, France; Université René Descartes Paris 5, France; Unité fonctionnelle de Mucoviscidose, Service de Pneumo-Pédiatrie, Hôpital Necker-Enfants Malades, 149 rue de Sèvres, 75743, Paris, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Southern</LastName>
<ForeName>Kevin W</ForeName>
<Initials>KW</Initials>
<AffiliationInfo><Affiliation>Department of Women's and Children's Health, University of Liverpool, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Taccetti</LastName>
<ForeName>Giovanni</ForeName>
<Initials>G</Initials>
<AffiliationInfo><Affiliation>Institute of Child Health, Alder Hey Children's Hospital, Eaton Road, Liverpool L12 2AP, UK; Cystic Fibrosis Centre, Department of Paediatric Medicine, Anna Meyer Children's University Hospital, Florence, Italy.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Ullrich</LastName>
<ForeName>Gerald</ForeName>
<Initials>G</Initials>
<AffiliationInfo><Affiliation>Reutzstr. 1, 19055, Schwerin, Germany.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Wolfe</LastName>
<ForeName>Sue</ForeName>
<Initials>S</Initials>
<AffiliationInfo><Affiliation>Paediatric Cystic Fibrosis, Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><CollectiveName>European Cystic Fibrosis Society</CollectiveName>
</Author>
</AuthorList>
<Language>eng</Language>
<GrantList CompleteYN="Y"><Grant><GrantID>PB-PG-1207-15025</GrantID>
<Agency>Department of Health</Agency>
<Country>United Kingdom</Country>
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<MedlineJournalInfo><Country>Netherlands</Country>
<MedlineTA>J Cyst Fibros</MedlineTA>
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<ISSNLinking>1569-1993</ISSNLinking>
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<MeshHeading><DescriptorName UI="D012944" MajorTopicYN="N">Social Support</DescriptorName>
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<MeshHeading><DescriptorName UI="D059039" MajorTopicYN="N">Standard of Care</DescriptorName>
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<KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Cystic fibrosis</Keyword>
<Keyword MajorTopicYN="N">Multidisciplinary management</Keyword>
<Keyword MajorTopicYN="N">Standards of care</Keyword>
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