European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.
Identifieur interne : 003A12 ( Main/Merge ); précédent : 003A11; suivant : 003A13European 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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Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE), France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>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)</wicri:regionArea><wicri:noRegion>France; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE)</wicri:noRegion><wicri:noRegion>France; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE)</wicri:noRegion></affiliation></author><author><name sortKey="Ratjen, Felix" sort="Ratjen, Felix" uniqKey="Ratjen F" first="Felix" last="Ratjen">Felix Ratjen</name><affiliation wicri:level="4"><nlm: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.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>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</wicri:regionArea><placeName><settlement type="city">Toronto</settlement><region type="state">Ontario</region></placeName><orgName type="university">Université de Toronto</orgName></affiliation></author><author><name sortKey="Schwarzenberg, Sarah Jane" sort="Schwarzenberg, Sarah Jane" uniqKey="Schwarzenberg S" first="Sarah Jane" last="Schwarzenberg">Sarah Jane Schwarzenberg</name><affiliation wicri:level="2"><nlm:affiliation>Pediatric Gastroenterology, Hepatology, and Nutrition, University of Minnesota, Amplatz Children's Hospital, Minneapolis, MN, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Pediatric Gastroenterology, Hepatology, and Nutrition, University of Minnesota, Amplatz Children's Hospital, Minneapolis, MN</wicri:regionArea><placeName><region type="state">Minnesota</region></placeName></affiliation></author><author><name sortKey="Sermet Gaudelus, Isabelle" sort="Sermet Gaudelus, Isabelle" uniqKey="Sermet Gaudelus I" first="Isabelle" last="Sermet-Gaudelus">Isabelle Sermet-Gaudelus</name><affiliation wicri:level="3"><nlm: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.</nlm:affiliation><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><placeName><region type="region" nuts="2">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Southern, Kevin W" sort="Southern, Kevin W" uniqKey="Southern K" first="Kevin W" last="Southern">Kevin W. Southern</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, University of Liverpool, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Women's and Children's Health, University of Liverpool</wicri:regionArea><wicri:noRegion>University of Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Taccetti, Giovanni" sort="Taccetti, Giovanni" uniqKey="Taccetti G" first="Giovanni" last="Taccetti">Giovanni Taccetti</name><affiliation wicri:level="1"><nlm: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.</nlm:affiliation><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></affiliation></author><author><name sortKey="Ullrich, Gerald" sort="Ullrich, Gerald" uniqKey="Ullrich G" first="Gerald" last="Ullrich">Gerald Ullrich</name><affiliation wicri:level="1"><nlm:affiliation>Reutzstr. 1, 19055, Schwerin, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Reutzstr. 1, 19055, Schwerin</wicri:regionArea><wicri:noRegion>19055, Schwerin</wicri:noRegion><wicri:noRegion>19055, Schwerin</wicri:noRegion><wicri:noRegion>Schwerin</wicri:noRegion></affiliation></author><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></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2014">2014</date><idno type="RBID">pubmed:24856775</idno><idno type="pmid">24856775</idno><idno type="doi">10.1016/j.jcf.2014.03.010</idno><idno type="wicri:Area/PubMed/Corpus">003796</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">003796</idno><idno type="wicri:Area/PubMed/Curation">003682</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">003682</idno><idno type="wicri:Area/PubMed/Checkpoint">003682</idno><idno type="wicri:explorRef" wicri:stream="Checkpoint" wicri:step="PubMed">003682</idno><idno type="wicri:Area/Ncbi/Merge">001A52</idno><idno type="wicri:Area/Ncbi/Curation">001A52</idno><idno type="wicri:Area/Ncbi/Checkpoint">001A52</idno><idno type="wicri:Area/Main/Merge">003A12</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.</title><author><name sortKey="Smyth, Alan R" sort="Smyth, Alan R" uniqKey="Smyth A" first="Alan R" last="Smyth">Alan R. Smyth</name><affiliation wicri:level="4"><nlm:affiliation>Division of Child Health, Obstetrics & Gynaecology (COG), School of Medicine, University of Nottingham, UK. Electronic address: Alan.Smyth@nottingham.ac.uk.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Division of Child Health, Obstetrics & Gynaecology (COG), School of Medicine, University of Nottingham</wicri:regionArea><placeName><settlement type="city">Nottingham</settlement><region type="nation">Angleterre</region><region type="région" nuts="1">Nottinghamshire</region></placeName><orgName type="university">Université de Nottingham</orgName></affiliation></author><author><name sortKey="Bell, Scott C" sort="Bell, Scott C" uniqKey="Bell S" first="Scott C" last="Bell">Scott C. Bell</name><affiliation wicri:level="1"><nlm:affiliation>Department of Thoracic Medicine, The Prince Charles Hospital, Australia; Queensland Children's Medical Research Institute, Brisbane, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Department of Thoracic Medicine, The Prince Charles Hospital, Australia; Queensland Children's Medical Research Institute, Brisbane</wicri:regionArea><wicri:noRegion>Brisbane</wicri:noRegion></affiliation></author><author><name sortKey="Bojcin, Snezana" sort="Bojcin, Snezana" uniqKey="Bojcin S" first="Snezana" last="Bojcin">Snezana Bojcin</name><affiliation><nlm:affiliation>Cystic Fibrosis Europe, Denmark; Macedonian Cystic Fibrosis Association, Misko Mihajlovski 15, 1000 Skopje, Republic of Macedonia.</nlm:affiliation><wicri:noCountry code="subField">Republic of Macedonia</wicri:noCountry></affiliation></author><author><name sortKey="Bryon, Mandy" sort="Bryon, Mandy" uniqKey="Bryon M" first="Mandy" last="Bryon">Mandy Bryon</name><affiliation wicri:level="3"><nlm:affiliation>Cystic Fibrosis Unit, Great Ormond Street Hospital for Children, London, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Cystic Fibrosis Unit, Great Ormond Street Hospital for Children, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Duff, Alistair" sort="Duff, Alistair" uniqKey="Duff A" first="Alistair" last="Duff">Alistair Duff</name><affiliation wicri:level="1"><nlm:affiliation>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>Regional Paediatric CF Unit, The Leeds Children's Hospital, Belmont Grove, Leeds LS2 9NS</wicri:regionArea><wicri:noRegion>Leeds LS2 9NS</wicri:noRegion></affiliation></author><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></placeName></affiliation></author><author><name sortKey="Kashirskaya, Nataliya" sort="Kashirskaya, Nataliya" uniqKey="Kashirskaya N" first="Nataliya" last="Kashirskaya">Nataliya Kashirskaya</name><affiliation wicri:level="3"><nlm:affiliation>Department of Cystic Fibrosis, Research Centre for Medical Genetics, RAMS, Moscow, Russia.</nlm:affiliation><country xml:lang="fr">Russie</country><wicri:regionArea>Department of Cystic Fibrosis, Research Centre for Medical Genetics, RAMS, Moscow</wicri:regionArea><placeName><settlement type="city">Moscou</settlement><region>District fédéral central</region></placeName></affiliation></author><author><name sortKey="Munck, Anne" sort="Munck, Anne" uniqKey="Munck A" first="Anne" last="Munck">Anne Munck</name><affiliation wicri:level="1"><nlm: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.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>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)</wicri:regionArea><wicri:noRegion>France; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE)</wicri:noRegion><wicri:noRegion>France; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE)</wicri:noRegion></affiliation></author><author><name sortKey="Ratjen, Felix" sort="Ratjen, Felix" uniqKey="Ratjen F" first="Felix" last="Ratjen">Felix Ratjen</name><affiliation wicri:level="4"><nlm: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.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>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</wicri:regionArea><placeName><settlement type="city">Toronto</settlement><region type="state">Ontario</region></placeName><orgName type="university">Université de Toronto</orgName></affiliation></author><author><name sortKey="Schwarzenberg, Sarah Jane" sort="Schwarzenberg, Sarah Jane" uniqKey="Schwarzenberg S" first="Sarah Jane" last="Schwarzenberg">Sarah Jane Schwarzenberg</name><affiliation wicri:level="2"><nlm:affiliation>Pediatric Gastroenterology, Hepatology, and Nutrition, University of Minnesota, Amplatz Children's Hospital, Minneapolis, MN, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Pediatric Gastroenterology, Hepatology, and Nutrition, University of Minnesota, Amplatz Children's Hospital, Minneapolis, MN</wicri:regionArea><placeName><region type="state">Minnesota</region></placeName></affiliation></author><author><name sortKey="Sermet Gaudelus, Isabelle" sort="Sermet Gaudelus, Isabelle" uniqKey="Sermet Gaudelus I" first="Isabelle" last="Sermet-Gaudelus">Isabelle Sermet-Gaudelus</name><affiliation wicri:level="3"><nlm: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.</nlm:affiliation><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><placeName><region type="region" nuts="2">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Southern, Kevin W" sort="Southern, Kevin W" uniqKey="Southern K" first="Kevin W" last="Southern">Kevin W. Southern</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, University of Liverpool, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Women's and Children's Health, University of Liverpool</wicri:regionArea><wicri:noRegion>University of Liverpool</wicri:noRegion></affiliation></author><author><name sortKey="Taccetti, Giovanni" sort="Taccetti, Giovanni" uniqKey="Taccetti G" first="Giovanni" last="Taccetti">Giovanni Taccetti</name><affiliation wicri:level="1"><nlm: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.</nlm:affiliation><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></affiliation></author><author><name sortKey="Ullrich, Gerald" sort="Ullrich, Gerald" uniqKey="Ullrich G" first="Gerald" last="Ullrich">Gerald Ullrich</name><affiliation wicri:level="1"><nlm:affiliation>Reutzstr. 1, 19055, Schwerin, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Reutzstr. 1, 19055, Schwerin</wicri:regionArea><wicri:noRegion>19055, Schwerin</wicri:noRegion><wicri:noRegion>19055, Schwerin</wicri:noRegion><wicri:noRegion>Schwerin</wicri:noRegion></affiliation></author><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></author></analytic><series><title level="j">Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society</title><idno type="eISSN">1873-5010</idno><imprint><date when="2014" type="published">2014</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term><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><term>Infant</term><term>Infant, Newborn</term><term>Lung Transplantation</term><term>Male</term><term>Social Support</term><term>Standard of Care (organization & administration)</term><term>Terminal Care (organization & administration)</term><term>Young Adult</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Accessibilité des services de santé (organisation et administration)</term><term>Adolescent</term><term>Adulte</term><term>Enfant</term><term>Enfant d'âge préscolaire</term><term>Europe</term><term>Femelle</term><term>Humains</term><term>Jeune adulte</term><term>Mucoviscidose ()</term><term>Mucoviscidose (diagnostic)</term><term>Mâle</term><term>Norme de soins (organisation et administration)</term><term>Nourrisson</term><term>Nouveau-né</term><term>Soins terminaux (organisation et administration)</term><term>Soutien social</term><term>Transplantation pulmonaire</term></keywords><keywords scheme="MESH" type="geographic" xml:lang="en"><term>Europe</term></keywords><keywords scheme="MESH" qualifier="complications" xml:lang="en"><term>Cystic Fibrosis</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Cystic Fibrosis</term></keywords><keywords scheme="MESH" qualifier="diagnostic" xml:lang="fr"><term>Mucoviscidose</term></keywords><keywords scheme="MESH" qualifier="organisation et administration" xml:lang="fr"><term>Accessibilité des services de santé</term><term>Norme de soins</term><term>Soins terminaux</term></keywords><keywords scheme="MESH" qualifier="organization & administration" xml:lang="en"><term>Health Services Accessibility</term><term>Standard of Care</term><term>Terminal Care</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Cystic Fibrosis</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Child</term><term>Child, Preschool</term><term>Female</term><term>Humans</term><term>Infant</term><term>Infant, Newborn</term><term>Lung Transplantation</term><term>Male</term><term>Social Support</term><term>Young Adult</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adolescent</term><term>Adulte</term><term>Enfant</term><term>Enfant d'âge préscolaire</term><term>Europe</term><term>Femelle</term><term>Humains</term><term>Jeune adulte</term><term>Mucoviscidose</term><term>Mâle</term><term>Nourrisson</term><term>Nouveau-né</term><term>Soutien social</term><term>Transplantation pulmonaire</term></keywords></textClass></profileDesc></teiHeader><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></record>Pour manipuler ce document sous Unix (Dilib)
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