Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.
Identifieur interne : 002C03 ( Ncbi/Checkpoint ); précédent : 002C02; suivant : 002C04Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.
Auteurs : J Stuart Elborn [Royaume-Uni] ; Scott C. Bell [Australie] ; Susan L. Madge [Royaume-Uni] ; Pierre-Regis Burgel [France] ; Carlo Castellani [Italie] ; Steven Conway [Royaume-Uni] ; Karleen De Rijcke [Belgique] ; Birgit Dembski [Allemagne] ; Pavel Drevinek [République tchèque] ; Harry G M. Heijerman [Pays-Bas] ; J Alistair Innes [Royaume-Uni] ; Anders Lindblad [Suède] ; Bruce Marshall [États-Unis] ; Hanne V. Olesen [Danemark] ; Andreas L. Reimann [Allemagne] ; Ampara Solé [Espagne] ; Laura Viviani [Italie] ; Thomas O F. Wagner [Allemagne] ; Tobias Welte [Allemagne] ; Francesco Blasi [Italie]Source :
- The European respiratory journal [ 1399-3003 ] ; 2016.
Descripteurs français
- KwdFr :
- Adulte, Besoins et demandes de services de santé, Comités consultatifs, Europe, Humains, Mucoviscidose (), Mucoviscidose (psychologie), Observance thérapeutique, Planification en santé, Pneumologie (enseignement et éducation), Pneumologie (main d’œuvre), Pneumologie (organisation et administration), Prise en charge de la maladie, Sociétés médicales, Soins terminaux, Soutien social, Transition aux soins pour adultes (organisation et administration), Transplantation pulmonaire.
- MESH :
- enseignement et éducation : Pneumologie.
- main d’œuvre : Pneumologie.
- organisation et administration : Pneumologie, Transition aux soins pour adultes.
- psychologie : Mucoviscidose.
- Adulte, Besoins et demandes de services de santé, Comités consultatifs, Europe, Humains, Mucoviscidose, Observance thérapeutique, Planification en santé, Prise en charge de la maladie, Sociétés médicales, Soins terminaux, Soutien social, Transplantation pulmonaire.
English descriptors
- KwdEn :
- Adult, Advisory Committees, Cystic Fibrosis (psychology), Cystic Fibrosis (therapy), Disease Management, Europe, Health Planning, Health Services Needs and Demand, Humans, Lung Transplantation, Patient Compliance, Pulmonary Medicine (education), Pulmonary Medicine (manpower), Pulmonary Medicine (organization & administration), Social Support, Societies, Medical, Terminal Care, Transition to Adult Care (organization & administration).
- MESH :
- education : Pulmonary Medicine.
- manpower : Pulmonary Medicine.
- organization & administration : Pulmonary Medicine, Transition to Adult Care.
- psychology : Cystic Fibrosis.
- therapy : Cystic Fibrosis.
- Adult, Advisory Committees, Disease Management, Europe, Health Planning, Health Services Needs and Demand, Humans, Lung Transplantation, Patient Compliance, Social Support, Societies, Medical, Terminal Care.
Abstract
The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major life-threatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme.
DOI: 10.1183/13993003.00592-2015
PubMed: 26453627
Affiliations:
- Allemagne, Australie, Belgique, Danemark, Espagne, France, Italie, Pays-Bas, Royaume-Uni, République tchèque, Suède, États-Unis
- Angleterre, Berlin, Bohême centrale, District de Cologne, District de Darmstadt, Grand Londres, Hesse (Land), Lombardie, Maryland, Rhénanie-du-Nord-Westphalie, Région de Bruxelles-Capitale, Écosse, Île-de-France
- Berlin, Bonn, Bruxelles, Francfort-sur-le-Main, Londres, Milan, Paris, Prague, Édimbourg
- Université Paris-Descartes
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pubmed:26453627Le document en format XML
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<author><name sortKey="Marshall, Bruce" sort="Marshall, Bruce" uniqKey="Marshall B" first="Bruce" last="Marshall">Bruce Marshall</name>
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<author><name sortKey="Olesen, Hanne V" sort="Olesen, Hanne V" uniqKey="Olesen H" first="Hanne V" last="Olesen">Hanne V. Olesen</name>
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<author><name sortKey="Reimann, Andreas L" sort="Reimann, Andreas L" uniqKey="Reimann A" first="Andreas L" last="Reimann">Andreas L. Reimann</name>
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<sourceDesc><biblStruct><analytic><title xml:lang="en">Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.</title>
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<author><name sortKey="Conway, Steven" sort="Conway, Steven" uniqKey="Conway S" first="Steven" last="Conway">Steven Conway</name>
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<author><name sortKey="De Rijcke, Karleen" sort="De Rijcke, Karleen" uniqKey="De Rijcke K" first="Karleen" last="De Rijcke">Karleen De Rijcke</name>
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<author><name sortKey="Heijerman, Harry G M" sort="Heijerman, Harry G M" uniqKey="Heijerman H" first="Harry G M" last="Heijerman">Harry G M. Heijerman</name>
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<author><name sortKey="Innes, J Alistair" sort="Innes, J Alistair" uniqKey="Innes J" first="J Alistair" last="Innes">J Alistair Innes</name>
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<author><name sortKey="Lindblad, Anders" sort="Lindblad, Anders" uniqKey="Lindblad A" first="Anders" last="Lindblad">Anders Lindblad</name>
<affiliation wicri:level="1"><nlm:affiliation>Dept of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden.</nlm:affiliation>
<country xml:lang="fr">Suède</country>
<wicri:regionArea>Dept of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg</wicri:regionArea>
<wicri:noRegion>Gothenburg</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Marshall, Bruce" sort="Marshall, Bruce" uniqKey="Marshall B" first="Bruce" last="Marshall">Bruce Marshall</name>
<affiliation wicri:level="2"><nlm:affiliation>Cystic Fibrosis Foundation, Bethesda, MD, USA.</nlm:affiliation>
<country xml:lang="fr">États-Unis</country>
<wicri:regionArea>Cystic Fibrosis Foundation, Bethesda, MD</wicri:regionArea>
<placeName><region type="state">Maryland</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Olesen, Hanne V" sort="Olesen, Hanne V" uniqKey="Olesen H" first="Hanne V" last="Olesen">Hanne V. Olesen</name>
<affiliation wicri:level="1"><nlm:affiliation>CF Centre, Aarhus University Hospital, Aarhus, Denmark.</nlm:affiliation>
<country xml:lang="fr">Danemark</country>
<wicri:regionArea>CF Centre, Aarhus University Hospital, Aarhus</wicri:regionArea>
<wicri:noRegion>Aarhus</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Reimann, Andreas L" sort="Reimann, Andreas L" uniqKey="Reimann A" first="Andreas L" last="Reimann">Andreas L. Reimann</name>
<affiliation wicri:level="3"><nlm:affiliation>Mukoviszidose Institut gGmbH, Bonn, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Mukoviszidose Institut gGmbH, Bonn</wicri:regionArea>
<placeName><region type="land" nuts="1">Rhénanie-du-Nord-Westphalie</region>
<region type="district" nuts="2">District de Cologne</region>
<settlement type="city">Bonn</settlement>
</placeName>
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<author><name sortKey="Sole, Ampara" sort="Sole, Ampara" uniqKey="Sole A" first="Ampara" last="Solé">Ampara Solé</name>
<affiliation wicri:level="1"><nlm:affiliation>Lung Transplant and Adult Cystic Fibrosis, Dept of Pneumology, University Hospital la FE, Valencia, Spain.</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Lung Transplant and Adult Cystic Fibrosis, Dept of Pneumology, University Hospital la FE, Valencia</wicri:regionArea>
<wicri:noRegion>Valencia</wicri:noRegion>
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<author><name sortKey="Viviani, Laura" sort="Viviani, Laura" uniqKey="Viviani L" first="Laura" last="Viviani">Laura Viviani</name>
<affiliation wicri:level="3"><nlm:affiliation>Dipartimento di Scienze Cliniche e di Comunità, Università degli Studi di Milano, Milan, Italy.</nlm:affiliation>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Dipartimento di Scienze Cliniche e di Comunità, Università degli Studi di Milano, Milan</wicri:regionArea>
<placeName><settlement type="city">Milan</settlement>
<region nuts="2">Lombardie</region>
</placeName>
</affiliation>
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<author><name sortKey="Wagner, Thomas O F" sort="Wagner, Thomas O F" uniqKey="Wagner T" first="Thomas O F" last="Wagner">Thomas O F. Wagner</name>
<affiliation wicri:level="3"><nlm:affiliation>Christiane Herzog CF Centre, Dept of Respiratory Diseases, Goethe University Frankfurt am Main, Frankfurt am Main, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Christiane Herzog CF Centre, Dept of Respiratory Diseases, Goethe University Frankfurt am Main, Frankfurt am Main</wicri:regionArea>
<placeName><region type="land" nuts="1">Hesse (Land)</region>
<region type="district" nuts="2">District de Darmstadt</region>
<settlement type="city">Francfort-sur-le-Main</settlement>
</placeName>
</affiliation>
</author>
<author><name sortKey="Welte, Tobias" sort="Welte, Tobias" uniqKey="Welte T" first="Tobias" last="Welte">Tobias Welte</name>
<affiliation wicri:level="1"><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Hanover, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Dept of Respiratory Medicine, Hannover Medical School, Hanover</wicri:regionArea>
<wicri:noRegion>Hanover</wicri:noRegion>
<wicri:noRegion>Hanover</wicri:noRegion>
<wicri:noRegion>Hanover</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Blasi, Francesco" sort="Blasi, Francesco" uniqKey="Blasi F" first="Francesco" last="Blasi">Francesco Blasi</name>
<affiliation wicri:level="3"><nlm:affiliation>Dept of Pathophysiology and Transplantation, University of Milan, IRCCS Fondazione Cà Granda, Milan, Italy francesco.blasi@unimi.it.</nlm:affiliation>
<country wicri:rule="url">Italie</country>
<wicri:regionArea>Dept of Pathophysiology and Transplantation, University of Milan, IRCCS Fondazione Cà Granda, Milan</wicri:regionArea>
<placeName><settlement type="city">Milan</settlement>
<region nuts="2">Lombardie</region>
</placeName>
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</analytic>
<series><title level="j">The European respiratory journal</title>
<idno type="eISSN">1399-3003</idno>
<imprint><date when="2016" type="published">2016</date>
</imprint>
</series>
</biblStruct>
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<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term>
<term>Advisory Committees</term>
<term>Cystic Fibrosis (psychology)</term>
<term>Cystic Fibrosis (therapy)</term>
<term>Disease Management</term>
<term>Europe</term>
<term>Health Planning</term>
<term>Health Services Needs and Demand</term>
<term>Humans</term>
<term>Lung Transplantation</term>
<term>Patient Compliance</term>
<term>Pulmonary Medicine (education)</term>
<term>Pulmonary Medicine (manpower)</term>
<term>Pulmonary Medicine (organization & administration)</term>
<term>Social Support</term>
<term>Societies, Medical</term>
<term>Terminal Care</term>
<term>Transition to Adult Care (organization & administration)</term>
</keywords>
<keywords scheme="KwdFr" xml:lang="fr"><term>Adulte</term>
<term>Besoins et demandes de services de santé</term>
<term>Comités consultatifs</term>
<term>Europe</term>
<term>Humains</term>
<term>Mucoviscidose ()</term>
<term>Mucoviscidose (psychologie)</term>
<term>Observance thérapeutique</term>
<term>Planification en santé</term>
<term>Pneumologie (enseignement et éducation)</term>
<term>Pneumologie (main d’œuvre)</term>
<term>Pneumologie (organisation et administration)</term>
<term>Prise en charge de la maladie</term>
<term>Sociétés médicales</term>
<term>Soins terminaux</term>
<term>Soutien social</term>
<term>Transition aux soins pour adultes (organisation et administration)</term>
<term>Transplantation pulmonaire</term>
</keywords>
<keywords scheme="MESH" qualifier="education" xml:lang="en"><term>Pulmonary Medicine</term>
</keywords>
<keywords scheme="MESH" qualifier="enseignement et éducation" xml:lang="fr"><term>Pneumologie</term>
</keywords>
<keywords scheme="MESH" qualifier="main d’œuvre" xml:lang="fr"><term>Pneumologie</term>
</keywords>
<keywords scheme="MESH" qualifier="manpower" xml:lang="en"><term>Pulmonary Medicine</term>
</keywords>
<keywords scheme="MESH" qualifier="organisation et administration" xml:lang="fr"><term>Pneumologie</term>
<term>Transition aux soins pour adultes</term>
</keywords>
<keywords scheme="MESH" qualifier="organization & administration" xml:lang="en"><term>Pulmonary Medicine</term>
<term>Transition to Adult Care</term>
</keywords>
<keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Mucoviscidose</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Cystic Fibrosis</term>
</keywords>
<keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Cystic Fibrosis</term>
</keywords>
<keywords scheme="MESH" xml:lang="en"><term>Adult</term>
<term>Advisory Committees</term>
<term>Disease Management</term>
<term>Europe</term>
<term>Health Planning</term>
<term>Health Services Needs and Demand</term>
<term>Humans</term>
<term>Lung Transplantation</term>
<term>Patient Compliance</term>
<term>Social Support</term>
<term>Societies, Medical</term>
<term>Terminal Care</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr"><term>Adulte</term>
<term>Besoins et demandes de services de santé</term>
<term>Comités consultatifs</term>
<term>Europe</term>
<term>Humains</term>
<term>Mucoviscidose</term>
<term>Observance thérapeutique</term>
<term>Planification en santé</term>
<term>Prise en charge de la maladie</term>
<term>Sociétés médicales</term>
<term>Soins terminaux</term>
<term>Soutien social</term>
<term>Transplantation pulmonaire</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<front><div type="abstract" xml:lang="en">The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major life-threatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme.</div>
</front>
</TEI>
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<country name="Allemagne"><region name="Berlin"><name sortKey="Dembski, Birgit" sort="Dembski, Birgit" uniqKey="Dembski B" first="Birgit" last="Dembski">Birgit Dembski</name>
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