Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS): rationale, design, and methods.
Identifieur interne : 000619 ( Main/Exploration ); précédent : 000618; suivant : 000620Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS): rationale, design, and methods.
Auteurs : Silke Apers [Belgique] ; Adrienne H. Kovacs [Canada] ; Koen Luyckx [Belgique] ; Luis Alday [Argentine] ; Malin Berghammer [Suède] ; Werner Budts [Belgique] ; Edward Callus [Italie] ; Maryanne Caruana [Malte] ; Shanthi Chidambarathanu [Inde] ; Stephen C. Cook [États-Unis] ; Mikael Dellborg [Suède] ; Junko Enomoto [Japon] ; Katrine Eriksen [Norvège] ; Susan M. Fernandes [États-Unis] ; Jamie L. Jackson [États-Unis] ; Bengt Johansson [Suède] ; Paul Khairy [Canada] ; Shelby Kutty [États-Unis] ; Samuel Menahem [Australie] ; Gwen Rempel [Canada] ; Maayke A. Sluman [Pays-Bas] ; Alexandra Soufi [France] ; Corina Thomet [Suisse] ; Gruschen Veldtman [États-Unis] ; Jou-Kou Wang [Taïwan] ; Kamila White [États-Unis] ; Philip Moons [Danemark]Source :
- International journal of cardiology [ 1874-1754 ] ; 2015.
Descripteurs français
- KwdFr :
- MESH :
- diagnostic : Cardiopathies congénitales.
- normes : Autorapport, Plan de recherche.
- épidémiologie : Cardiopathies congénitales.
- Adulte, Cardiopathies congénitales, Femelle, Humains, Internationalité, Mâle, Résultat thérapeutique, Études transversales.
English descriptors
- KwdEn :
- MESH :
- diagnosis : Heart Defects, Congenital.
- epidemiology : Heart Defects, Congenital.
- standards : Research Design, Self Report.
- therapy : Heart Defects, Congenital.
- Adult, Cross-Sectional Studies, Female, Humans, Internationality, Male, Treatment Outcome.
Abstract
Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods.
DOI: 10.1016/j.ijcard.2014.11.084
PubMed: 25464481
Affiliations:
- Argentine, Australie, Belgique, Canada, Danemark, France, Inde, Italie, Japon, Malte, Norvège, Pays-Bas, Suisse, Suède, Taïwan, États-Unis
- Auvergne-Rhône-Alpes, Californie, Canton de Berne, Hollande-Septentrionale, Hovedstaden, Lombardie, Missouri (État), Nebraska, Ohio, Pennsylvanie, Québec, Rhône-Alpes, Victoria (État), Østlandet
- Amsterdam, Berne, Copenhague, Lyon, Melbourne, Milan, Montréal, Oslo
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Le document en format XML
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M. Cherian Heart Foundation), Chennai, India.</nlm:affiliation><country xml:lang="fr">Inde</country><wicri:regionArea>Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai</wicri:regionArea><wicri:noRegion>Chennai</wicri:noRegion></affiliation></author><author><name sortKey="Cook, Stephen C" sort="Cook, Stephen C" uniqKey="Cook S" first="Stephen C" last="Cook">Stephen C. Cook</name><affiliation wicri:level="2"><nlm:affiliation>Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA</wicri:regionArea><placeName><region type="state">Pennsylvanie</region></placeName></affiliation></author><author><name sortKey="Dellborg, Mikael" sort="Dellborg, Mikael" uniqKey="Dellborg M" first="Mikael" last="Dellborg">Mikael Dellborg</name><affiliation wicri:level="1"><nlm:affiliation>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg</wicri:regionArea><wicri:noRegion>The Sahlgrenska Academy at University of Gothenburg</wicri:noRegion></affiliation></author><author><name sortKey="Enomoto, Junko" sort="Enomoto, Junko" uniqKey="Enomoto J" first="Junko" last="Enomoto">Junko Enomoto</name><affiliation wicri:level="1"><nlm:affiliation>Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba</wicri:regionArea><wicri:noRegion>Chiba</wicri:noRegion></affiliation></author><author><name sortKey="Eriksen, Katrine" sort="Eriksen, Katrine" uniqKey="Eriksen K" first="Katrine" last="Eriksen">Katrine Eriksen</name><affiliation wicri:level="3"><nlm:affiliation>Oslo University Hospital, Rikshospitalet, Oslo, Norway.</nlm:affiliation><country xml:lang="fr">Norvège</country><wicri:regionArea>Oslo University Hospital, Rikshospitalet, Oslo</wicri:regionArea><placeName><settlement type="city">Oslo</settlement><region nuts="2">Østlandet</region></placeName></affiliation></author><author><name sortKey="Fernandes, Susan M" sort="Fernandes, Susan M" uniqKey="Fernandes S" first="Susan M" last="Fernandes">Susan M. Fernandes</name><affiliation wicri:level="2"><nlm:affiliation>Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation></author><author><name sortKey="Jackson, Jamie L" sort="Jackson, Jamie L" uniqKey="Jackson J" first="Jamie L" last="Jackson">Jamie L. Jackson</name><affiliation wicri:level="2"><nlm:affiliation>Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH</wicri:regionArea><placeName><region type="state">Ohio</region></placeName></affiliation></author><author><name sortKey="Johansson, Bengt" sort="Johansson, Bengt" uniqKey="Johansson B" first="Bengt" last="Johansson">Bengt Johansson</name><affiliation wicri:level="1"><nlm:affiliation>Department of Clinical Medicine and Public Health, Umeå University, Umeå, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Clinical Medicine and Public Health, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Khairy, Paul" sort="Khairy, Paul" uniqKey="Khairy P" first="Paul" last="Khairy">Paul Khairy</name><affiliation wicri:level="3"><nlm:affiliation>Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal</wicri:regionArea><placeName><settlement type="city">Montréal</settlement><region type="state">Québec</region></placeName></affiliation></author><author><name sortKey="Kutty, Shelby" sort="Kutty, Shelby" uniqKey="Kutty S" first="Shelby" last="Kutty">Shelby Kutty</name><affiliation wicri:level="2"><nlm:affiliation>University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE</wicri:regionArea><placeName><region type="state">Nebraska</region></placeName></affiliation></author><author><name sortKey="Menahem, Samuel" sort="Menahem, Samuel" uniqKey="Menahem S" first="Samuel" last="Menahem">Samuel Menahem</name><affiliation wicri:level="3"><nlm:affiliation>Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Monash Heart, Monash Medical Centre, Monash University, Melbourne</wicri:regionArea><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author><author><name sortKey="Rempel, Gwen" sort="Rempel, Gwen" uniqKey="Rempel G" first="Gwen" last="Rempel">Gwen Rempel</name><affiliation wicri:level="1"><nlm:affiliation>Northern Alberta Adult Congenital Heart Clinic, University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Northern Alberta Adult Congenital Heart Clinic, University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Sluman, Maayke A" sort="Sluman, Maayke A" uniqKey="Sluman M" first="Maayke A" last="Sluman">Maayke A. Sluman</name><affiliation wicri:level="3"><nlm:affiliation>Academic Medical Center, Department of Cardiology, Amsterdam, The Netherlands.</nlm:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Academic Medical Center, Department of Cardiology, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation></author><author><name sortKey="Soufi, Alexandra" sort="Soufi, Alexandra" uniqKey="Soufi A" first="Alexandra" last="Soufi">Alexandra Soufi</name><affiliation wicri:level="3"><nlm:affiliation>Hospital Louis Pradel, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Hospital Louis Pradel, Lyon</wicri:regionArea><placeName><region type="region">Auvergne-Rhône-Alpes</region><region type="old region">Rhône-Alpes</region><settlement type="city">Lyon</settlement></placeName></affiliation></author><author><name sortKey="Thomet, Corina" sort="Thomet, Corina" uniqKey="Thomet C" first="Corina" last="Thomet">Corina Thomet</name><affiliation wicri:level="3"><nlm:affiliation>University Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland.</nlm:affiliation><country xml:lang="fr">Suisse</country><wicri:regionArea>University Hospital Bern, Center for Congenital Heart Disease, Bern</wicri:regionArea><placeName><settlement type="city">Berne</settlement><region type="région" nuts="3">Canton de Berne</region></placeName></affiliation></author><author><name sortKey="Veldtman, Gruschen" sort="Veldtman, Gruschen" uniqKey="Veldtman G" first="Gruschen" last="Veldtman">Gruschen Veldtman</name><affiliation wicri:level="2"><nlm:affiliation>Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Cincinnati Children's Hospital Medical Center, Cincinnati, OH</wicri:regionArea><placeName><region type="state">Ohio</region></placeName></affiliation></author><author><name sortKey="Wang, Jou Kou" sort="Wang, Jou Kou" uniqKey="Wang J" first="Jou-Kou" last="Wang">Jou-Kou Wang</name><affiliation wicri:level="1"><nlm:affiliation>Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.</nlm:affiliation><country xml:lang="fr">Taïwan</country><wicri:regionArea>Department of Pediatrics, National Taiwan University Hospital, Taipei</wicri:regionArea><wicri:noRegion>Taipei</wicri:noRegion></affiliation></author><author><name sortKey="White, Kamila" sort="White, Kamila" uniqKey="White K" first="Kamila" last="White">Kamila White</name><affiliation wicri:level="2"><nlm:affiliation>Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO</wicri:regionArea><placeName><region type="state">Missouri (État)</region></placeName></affiliation></author><author><name sortKey="Moons, Philip" sort="Moons, Philip" uniqKey="Moons P" first="Philip" last="Moons">Philip Moons</name><affiliation wicri:level="3"><nlm:affiliation>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven, Belgium; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; The Heart Centre, Copenhagen University Hospital, Copenhagen, Denmark. Electronic address: philip.moons@kuleuven.be.</nlm:affiliation><country xml:lang="fr">Danemark</country><wicri:regionArea>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven, Belgium; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; The Heart Centre, Copenhagen University Hospital, Copenhagen</wicri:regionArea><placeName><settlement type="city">Copenhague</settlement><region type="région" nuts="2">Hovedstaden</region></placeName></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2015">2015</date><idno type="RBID">pubmed:25464481</idno><idno type="pmid">25464481</idno><idno type="doi">10.1016/j.ijcard.2014.11.084</idno><idno type="wicri:Area/PubMed/Corpus">000815</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000815</idno><idno type="wicri:Area/PubMed/Curation">000815</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">000815</idno><idno type="wicri:Area/PubMed/Checkpoint">000815</idno><idno type="wicri:explorRef" wicri:stream="Checkpoint" wicri:step="PubMed">000815</idno><idno type="wicri:Area/Ncbi/Merge">004217</idno><idno type="wicri:Area/Ncbi/Curation">004217</idno><idno type="wicri:Area/Ncbi/Checkpoint">004217</idno><idno type="wicri:Area/Main/Merge">000619</idno><idno type="wicri:Area/Main/Curation">000619</idno><idno type="wicri:Area/Main/Exploration">000619</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS): rationale, design, and methods.</title><author><name sortKey="Apers, Silke" sort="Apers, Silke" uniqKey="Apers S" first="Silke" last="Apers">Silke Apers</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven</wicri:regionArea><wicri:noRegion>B-3000 Leuven</wicri:noRegion></affiliation></author><author><name sortKey="Kovacs, Adrienne H" sort="Kovacs, Adrienne H" uniqKey="Kovacs A" first="Adrienne H" last="Kovacs">Adrienne H. Kovacs</name><affiliation wicri:level="1"><nlm:affiliation>Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, Toronto</wicri:regionArea><wicri:noRegion>Toronto</wicri:noRegion></affiliation></author><author><name sortKey="Luyckx, Koen" sort="Luyckx, Koen" uniqKey="Luyckx K" first="Koen" last="Luyckx">Koen Luyckx</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development, B-3000 Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development, B-3000 Leuven</wicri:regionArea><wicri:noRegion>B-3000 Leuven</wicri:noRegion></affiliation></author><author><name sortKey="Alday, Luis" sort="Alday, Luis" uniqKey="Alday L" first="Luis" last="Alday">Luis Alday</name><affiliation wicri:level="1"><nlm:affiliation>Division of Cardiology, Hospital de Niños, Córdoba, Argentina.</nlm:affiliation><country xml:lang="fr">Argentine</country><wicri:regionArea>Division of Cardiology, Hospital de Niños, Córdoba</wicri:regionArea><wicri:noRegion>Córdoba</wicri:noRegion></affiliation></author><author><name sortKey="Berghammer, Malin" sort="Berghammer, Malin" uniqKey="Berghammer M" first="Malin" last="Berghammer">Malin Berghammer</name><affiliation wicri:level="1"><nlm:affiliation>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg</wicri:regionArea><wicri:noRegion>Gothenburg</wicri:noRegion></affiliation></author><author><name sortKey="Budts, Werner" sort="Budts, Werner" uniqKey="Budts W" first="Werner" last="Budts">Werner Budts</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven - University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, B-3000 Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven - University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, B-3000 Leuven</wicri:regionArea><wicri:noRegion>B-3000 Leuven</wicri:noRegion></affiliation></author><author><name sortKey="Callus, Edward" sort="Callus, Edward" uniqKey="Callus E" first="Edward" last="Callus">Edward Callus</name><affiliation wicri:level="3"><nlm:affiliation>Department of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan, Italy.</nlm:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Department of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan</wicri:regionArea><placeName><settlement type="city">Milan</settlement><region nuts="2">Lombardie</region></placeName></affiliation></author><author><name sortKey="Caruana, Maryanne" sort="Caruana, Maryanne" uniqKey="Caruana M" first="Maryanne" last="Caruana">Maryanne Caruana</name><affiliation wicri:level="1"><nlm:affiliation>Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.</nlm:affiliation><country xml:lang="fr">Malte</country><wicri:regionArea>Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass</wicri:regionArea><wicri:noRegion>Birkirkara Bypass</wicri:noRegion></affiliation></author><author><name sortKey="Chidambarathanu, Shanthi" sort="Chidambarathanu, Shanthi" uniqKey="Chidambarathanu S" first="Shanthi" last="Chidambarathanu">Shanthi Chidambarathanu</name><affiliation wicri:level="1"><nlm:affiliation>Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.</nlm:affiliation><country xml:lang="fr">Inde</country><wicri:regionArea>Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai</wicri:regionArea><wicri:noRegion>Chennai</wicri:noRegion></affiliation></author><author><name sortKey="Cook, Stephen C" sort="Cook, Stephen C" uniqKey="Cook S" first="Stephen C" last="Cook">Stephen C. Cook</name><affiliation wicri:level="2"><nlm:affiliation>Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA</wicri:regionArea><placeName><region type="state">Pennsylvanie</region></placeName></affiliation></author><author><name sortKey="Dellborg, Mikael" sort="Dellborg, Mikael" uniqKey="Dellborg M" first="Mikael" last="Dellborg">Mikael Dellborg</name><affiliation wicri:level="1"><nlm:affiliation>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg</wicri:regionArea><wicri:noRegion>The Sahlgrenska Academy at University of Gothenburg</wicri:noRegion></affiliation></author><author><name sortKey="Enomoto, Junko" sort="Enomoto, Junko" uniqKey="Enomoto J" first="Junko" last="Enomoto">Junko Enomoto</name><affiliation wicri:level="1"><nlm:affiliation>Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba</wicri:regionArea><wicri:noRegion>Chiba</wicri:noRegion></affiliation></author><author><name sortKey="Eriksen, Katrine" sort="Eriksen, Katrine" uniqKey="Eriksen K" first="Katrine" last="Eriksen">Katrine Eriksen</name><affiliation wicri:level="3"><nlm:affiliation>Oslo University Hospital, Rikshospitalet, Oslo, Norway.</nlm:affiliation><country xml:lang="fr">Norvège</country><wicri:regionArea>Oslo University Hospital, Rikshospitalet, Oslo</wicri:regionArea><placeName><settlement type="city">Oslo</settlement><region nuts="2">Østlandet</region></placeName></affiliation></author><author><name sortKey="Fernandes, Susan M" sort="Fernandes, Susan M" uniqKey="Fernandes S" first="Susan M" last="Fernandes">Susan M. Fernandes</name><affiliation wicri:level="2"><nlm:affiliation>Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, CA</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation></author><author><name sortKey="Jackson, Jamie L" sort="Jackson, Jamie L" uniqKey="Jackson J" first="Jamie L" last="Jackson">Jamie L. Jackson</name><affiliation wicri:level="2"><nlm:affiliation>Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH</wicri:regionArea><placeName><region type="state">Ohio</region></placeName></affiliation></author><author><name sortKey="Johansson, Bengt" sort="Johansson, Bengt" uniqKey="Johansson B" first="Bengt" last="Johansson">Bengt Johansson</name><affiliation wicri:level="1"><nlm:affiliation>Department of Clinical Medicine and Public Health, Umeå University, Umeå, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Clinical Medicine and Public Health, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Khairy, Paul" sort="Khairy, Paul" uniqKey="Khairy P" first="Paul" last="Khairy">Paul Khairy</name><affiliation wicri:level="3"><nlm:affiliation>Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal</wicri:regionArea><placeName><settlement type="city">Montréal</settlement><region type="state">Québec</region></placeName></affiliation></author><author><name sortKey="Kutty, Shelby" sort="Kutty, Shelby" uniqKey="Kutty S" first="Shelby" last="Kutty">Shelby Kutty</name><affiliation wicri:level="2"><nlm:affiliation>University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE</wicri:regionArea><placeName><region type="state">Nebraska</region></placeName></affiliation></author><author><name sortKey="Menahem, Samuel" sort="Menahem, Samuel" uniqKey="Menahem S" first="Samuel" last="Menahem">Samuel Menahem</name><affiliation wicri:level="3"><nlm:affiliation>Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Monash Heart, Monash Medical Centre, Monash University, Melbourne</wicri:regionArea><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author><author><name sortKey="Rempel, Gwen" sort="Rempel, Gwen" uniqKey="Rempel G" first="Gwen" last="Rempel">Gwen Rempel</name><affiliation wicri:level="1"><nlm:affiliation>Northern Alberta Adult Congenital Heart Clinic, University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Northern Alberta Adult Congenital Heart Clinic, University of Alberta, Edmonton</wicri:regionArea><wicri:noRegion>Edmonton</wicri:noRegion></affiliation></author><author><name sortKey="Sluman, Maayke A" sort="Sluman, Maayke A" uniqKey="Sluman M" first="Maayke A" last="Sluman">Maayke A. Sluman</name><affiliation wicri:level="3"><nlm:affiliation>Academic Medical Center, Department of Cardiology, Amsterdam, The Netherlands.</nlm:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Academic Medical Center, Department of Cardiology, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation></author><author><name sortKey="Soufi, Alexandra" sort="Soufi, Alexandra" uniqKey="Soufi A" first="Alexandra" last="Soufi">Alexandra Soufi</name><affiliation wicri:level="3"><nlm:affiliation>Hospital Louis Pradel, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Hospital Louis Pradel, Lyon</wicri:regionArea><placeName><region type="region">Auvergne-Rhône-Alpes</region><region type="old region">Rhône-Alpes</region><settlement type="city">Lyon</settlement></placeName></affiliation></author><author><name sortKey="Thomet, Corina" sort="Thomet, Corina" uniqKey="Thomet C" first="Corina" last="Thomet">Corina Thomet</name><affiliation wicri:level="3"><nlm:affiliation>University Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland.</nlm:affiliation><country xml:lang="fr">Suisse</country><wicri:regionArea>University Hospital Bern, Center for Congenital Heart Disease, Bern</wicri:regionArea><placeName><settlement type="city">Berne</settlement><region type="région" nuts="3">Canton de Berne</region></placeName></affiliation></author><author><name sortKey="Veldtman, Gruschen" sort="Veldtman, Gruschen" uniqKey="Veldtman G" first="Gruschen" last="Veldtman">Gruschen Veldtman</name><affiliation wicri:level="2"><nlm:affiliation>Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Cincinnati Children's Hospital Medical Center, Cincinnati, OH</wicri:regionArea><placeName><region type="state">Ohio</region></placeName></affiliation></author><author><name sortKey="Wang, Jou Kou" sort="Wang, Jou Kou" uniqKey="Wang J" first="Jou-Kou" last="Wang">Jou-Kou Wang</name><affiliation wicri:level="1"><nlm:affiliation>Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.</nlm:affiliation><country xml:lang="fr">Taïwan</country><wicri:regionArea>Department of Pediatrics, National Taiwan University Hospital, Taipei</wicri:regionArea><wicri:noRegion>Taipei</wicri:noRegion></affiliation></author><author><name sortKey="White, Kamila" sort="White, Kamila" uniqKey="White K" first="Kamila" last="White">Kamila White</name><affiliation wicri:level="2"><nlm:affiliation>Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO</wicri:regionArea><placeName><region type="state">Missouri (État)</region></placeName></affiliation></author><author><name sortKey="Moons, Philip" sort="Moons, Philip" uniqKey="Moons P" first="Philip" last="Moons">Philip Moons</name><affiliation wicri:level="3"><nlm:affiliation>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven, Belgium; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; The Heart Centre, Copenhagen University Hospital, Copenhagen, Denmark. Electronic address: philip.moons@kuleuven.be.</nlm:affiliation><country xml:lang="fr">Danemark</country><wicri:regionArea>KU Leuven - University of Leuven, Department of Public Health and Primary Care, B-3000 Leuven, Belgium; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden; The Heart Centre, Copenhagen University Hospital, Copenhagen</wicri:regionArea><placeName><settlement type="city">Copenhague</settlement><region type="région" nuts="2">Hovedstaden</region></placeName></affiliation></author></analytic><series><title level="j">International journal of cardiology</title><idno type="eISSN">1874-1754</idno><imprint><date when="2015" type="published">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Cross-Sectional Studies</term><term>Female</term><term>Heart Defects, Congenital (diagnosis)</term><term>Heart Defects, Congenital (epidemiology)</term><term>Heart Defects, Congenital (therapy)</term><term>Humans</term><term>Internationality</term><term>Male</term><term>Research Design (standards)</term><term>Self Report (standards)</term><term>Treatment Outcome</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Adulte</term><term>Autorapport (normes)</term><term>Cardiopathies congénitales ()</term><term>Cardiopathies congénitales (diagnostic)</term><term>Cardiopathies congénitales (épidémiologie)</term><term>Femelle</term><term>Humains</term><term>Internationalité</term><term>Mâle</term><term>Plan de recherche (normes)</term><term>Résultat thérapeutique</term><term>Études transversales</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Heart Defects, Congenital</term></keywords><keywords scheme="MESH" qualifier="diagnostic" xml:lang="fr"><term>Cardiopathies congénitales</term></keywords><keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Heart Defects, Congenital</term></keywords><keywords scheme="MESH" qualifier="normes" xml:lang="fr"><term>Autorapport</term><term>Plan de recherche</term></keywords><keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Research Design</term><term>Self Report</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Heart Defects, Congenital</term></keywords><keywords scheme="MESH" qualifier="épidémiologie" xml:lang="fr"><term>Cardiopathies congénitales</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adult</term><term>Cross-Sectional Studies</term><term>Female</term><term>Humans</term><term>Internationality</term><term>Male</term><term>Treatment Outcome</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adulte</term><term>Cardiopathies congénitales</term><term>Femelle</term><term>Humains</term><term>Internationalité</term><term>Mâle</term><term>Résultat thérapeutique</term><term>Études transversales</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods.</div></front></TEI><affiliations><list><country><li>Argentine</li><li>Australie</li><li>Belgique</li><li>Canada</li><li>Danemark</li><li>France</li><li>Inde</li><li>Italie</li><li>Japon</li><li>Malte</li><li>Norvège</li><li>Pays-Bas</li><li>Suisse</li><li>Suède</li><li>Taïwan</li><li>États-Unis</li></country><region><li>Auvergne-Rhône-Alpes</li><li>Californie</li><li>Canton de Berne</li><li>Hollande-Septentrionale</li><li>Hovedstaden</li><li>Lombardie</li><li>Missouri (État)</li><li>Nebraska</li><li>Ohio</li><li>Pennsylvanie</li><li>Québec</li><li>Rhône-Alpes</li><li>Victoria (État)</li><li>Østlandet</li></region><settlement><li>Amsterdam</li><li>Berne</li><li>Copenhague</li><li>Lyon</li><li>Melbourne</li><li>Milan</li><li>Montréal</li><li>Oslo</li></settlement></list><tree><country name="Belgique"><noRegion><name sortKey="Apers, Silke" sort="Apers, Silke" uniqKey="Apers S" first="Silke" last="Apers">Silke Apers</name></noRegion><name sortKey="Budts, Werner" sort="Budts, Werner" uniqKey="Budts W" first="Werner" last="Budts">Werner Budts</name><name sortKey="Luyckx, Koen" sort="Luyckx, Koen" uniqKey="Luyckx K" first="Koen" last="Luyckx">Koen Luyckx</name></country><country name="Canada"><noRegion><name sortKey="Kovacs, Adrienne H" sort="Kovacs, Adrienne H" uniqKey="Kovacs A" first="Adrienne H" last="Kovacs">Adrienne H. Kovacs</name></noRegion><name sortKey="Khairy, Paul" sort="Khairy, Paul" uniqKey="Khairy P" first="Paul" last="Khairy">Paul Khairy</name><name sortKey="Rempel, Gwen" sort="Rempel, Gwen" uniqKey="Rempel G" first="Gwen" last="Rempel">Gwen Rempel</name></country><country name="Argentine"><noRegion><name sortKey="Alday, Luis" sort="Alday, Luis" uniqKey="Alday L" first="Luis" last="Alday">Luis Alday</name></noRegion></country><country name="Suède"><noRegion><name sortKey="Berghammer, Malin" sort="Berghammer, Malin" uniqKey="Berghammer M" first="Malin" last="Berghammer">Malin Berghammer</name></noRegion><name sortKey="Dellborg, Mikael" sort="Dellborg, Mikael" uniqKey="Dellborg M" first="Mikael" last="Dellborg">Mikael Dellborg</name><name sortKey="Johansson, Bengt" sort="Johansson, Bengt" uniqKey="Johansson B" first="Bengt" last="Johansson">Bengt Johansson</name></country><country name="Italie"><region name="Lombardie"><name sortKey="Callus, Edward" sort="Callus, Edward" uniqKey="Callus E" first="Edward" last="Callus">Edward Callus</name></region></country><country name="Malte"><noRegion><name sortKey="Caruana, Maryanne" sort="Caruana, Maryanne" uniqKey="Caruana M" first="Maryanne" last="Caruana">Maryanne Caruana</name></noRegion></country><country name="Inde"><noRegion><name sortKey="Chidambarathanu, Shanthi" sort="Chidambarathanu, Shanthi" uniqKey="Chidambarathanu S" first="Shanthi" last="Chidambarathanu">Shanthi Chidambarathanu</name></noRegion></country><country name="États-Unis"><region name="Pennsylvanie"><name sortKey="Cook, Stephen C" sort="Cook, Stephen C" uniqKey="Cook S" first="Stephen C" last="Cook">Stephen C. Cook</name></region><name sortKey="Fernandes, Susan M" sort="Fernandes, Susan M" uniqKey="Fernandes S" first="Susan M" last="Fernandes">Susan M. Fernandes</name><name sortKey="Jackson, Jamie L" sort="Jackson, Jamie L" uniqKey="Jackson J" first="Jamie L" last="Jackson">Jamie L. Jackson</name><name sortKey="Kutty, Shelby" sort="Kutty, Shelby" uniqKey="Kutty S" first="Shelby" last="Kutty">Shelby Kutty</name><name sortKey="Veldtman, Gruschen" sort="Veldtman, Gruschen" uniqKey="Veldtman G" first="Gruschen" last="Veldtman">Gruschen Veldtman</name><name sortKey="White, Kamila" sort="White, Kamila" uniqKey="White K" first="Kamila" last="White">Kamila White</name></country><country name="Japon"><noRegion><name sortKey="Enomoto, Junko" sort="Enomoto, Junko" uniqKey="Enomoto J" first="Junko" last="Enomoto">Junko Enomoto</name></noRegion></country><country name="Norvège"><region name="Østlandet"><name sortKey="Eriksen, Katrine" sort="Eriksen, Katrine" uniqKey="Eriksen K" first="Katrine" last="Eriksen">Katrine Eriksen</name></region></country><country name="Australie"><region name="Victoria (État)"><name sortKey="Menahem, Samuel" sort="Menahem, Samuel" uniqKey="Menahem S" first="Samuel" last="Menahem">Samuel Menahem</name></region></country><country name="Pays-Bas"><region name="Hollande-Septentrionale"><name sortKey="Sluman, Maayke A" sort="Sluman, Maayke A" uniqKey="Sluman M" first="Maayke A" last="Sluman">Maayke A. Sluman</name></region></country><country name="France"><region name="Auvergne-Rhône-Alpes"><name sortKey="Soufi, Alexandra" sort="Soufi, Alexandra" uniqKey="Soufi A" first="Alexandra" last="Soufi">Alexandra Soufi</name></region></country><country name="Suisse"><region name="Canton de Berne"><name sortKey="Thomet, Corina" sort="Thomet, Corina" uniqKey="Thomet C" first="Corina" last="Thomet">Corina Thomet</name></region></country><country name="Taïwan"><noRegion><name sortKey="Wang, Jou Kou" sort="Wang, Jou Kou" uniqKey="Wang J" first="Jou-Kou" last="Wang">Jou-Kou Wang</name></noRegion></country><country name="Danemark"><region name="Hovedstaden"><name sortKey="Moons, Philip" sort="Moons, Philip" uniqKey="Moons P" first="Philip" last="Moons">Philip Moons</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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