Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors.
Identifieur interne : 000854 ( Main/Exploration ); précédent : 000853; suivant : 000855Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors.
Auteurs : Philip Moons [Suède] ; Adrienne H. Kovacs [États-Unis] ; Koen Luyckx [Belgique] ; Corina Thomet [Suisse] ; Werner Budts [Belgique] ; Junko Enomoto [Japon] ; Maayke A. Sluman [Pays-Bas] ; Hsiao-Ling Yang [Taïwan] ; Jamie L. Jackson [États-Unis] ; Paul Khairy [Canada] ; Stephen C. Cook [États-Unis] ; Raghavan Subramanyan [Inde] ; Luis Alday [Argentine] ; Katrine Eriksen [Norvège] ; Mikael Dellborg [Suède] ; Malin Berghammer [Suède] ; Bengt Johansson [Suède] ; Andrew S. Mackie [Canada] ; Samuel Menahem [Australie] ; Maryanne Caruana [Malte] ; Gruschen Veldtman [États-Unis] ; Alexandra Soufi [France] ; Susan M. Fernandes [États-Unis] ; Kamila White [États-Unis] ; Edward Callus [Italie] ; Shelby Kutty [États-Unis] ; Liesbet Van Bulck [Belgique] ; Silke Apers [Belgique]Source :
- International journal of cardiology [ 1874-1754 ] ; 2018.
Descripteurs français
- KwdFr :
- Adulte (MeSH), Autorapport (normes), Cardiopathies congénitales (diagnostic), Cardiopathies congénitales (thérapie), Cardiopathies congénitales (épidémiologie), Facteurs socioéconomiques (MeSH), Femelle (MeSH), Humains (MeSH), Internationalité (MeSH), Mesures des résultats rapportés par les patients (MeSH), Mâle (MeSH), Prestations des soins de santé (méthodes), Prestations des soins de santé (normes), Études transversales (MeSH).
- MESH :
- diagnostic : Cardiopathies congénitales.
- méthodes : Prestations des soins de santé.
- normes : Autorapport, Prestations des soins de santé.
- thérapie : Cardiopathies congénitales.
- épidémiologie : Cardiopathies congénitales.
- Adulte, Facteurs socioéconomiques, Femelle, Humains, Internationalité, Mesures des résultats rapportés par les patients, Mâle, Études transversales.
English descriptors
- KwdEn :
- Adult (MeSH), Cross-Sectional Studies (MeSH), Delivery of Health Care (methods), Delivery of Health Care (standards), Female (MeSH), Heart Defects, Congenital (diagnosis), Heart Defects, Congenital (epidemiology), Heart Defects, Congenital (therapy), Humans (MeSH), Internationality (MeSH), Male (MeSH), Patient Reported Outcome Measures (MeSH), Self Report (standards), Socioeconomic Factors (MeSH).
- MESH :
- diagnosis : Heart Defects, Congenital.
- epidemiology : Heart Defects, Congenital.
- methods : Delivery of Health Care.
- standards : Delivery of Health Care, Self Report.
- therapy : Heart Defects, Congenital.
- Adult, Cross-Sectional Studies, Female, Humans, Internationality, Male, Patient Reported Outcome Measures, Socioeconomic Factors.
Abstract
AIMS
Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.
METHODS AND RESULTS
Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.
CONCLUSIONS
This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.
DOI: 10.1016/j.ijcard.2017.10.064
PubMed: 29107358
Affiliations:
- Argentine, Australie, Belgique, Canada, France, Inde, Italie, Japon, Malte, Norvège, Pays-Bas, Suisse, Suède, Taïwan, États-Unis
- Alberta, Auvergne-Rhône-Alpes, Californie, Canton de Berne, Hollande-Septentrionale, Lombardie, Michigan, Missouri (État), Nebraska, Ohio, Oregon, Québec, Rhône-Alpes, Victoria (État), Østlandet
- Amsterdam, Berne, Edmonton, Lyon, Melbourne, Milan, Montréal, Oslo
Links toward previous steps (curation, corpus...)
Le document en format XML
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Sluman</name><affiliation wicri:level="3"><nlm:affiliation>Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Cardiology, Academic Medical Center, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation></author><author><name sortKey="Yang, Hsiao Ling" sort="Yang, Hsiao Ling" uniqKey="Yang H" first="Hsiao-Ling" last="Yang">Hsiao-Ling Yang</name><affiliation wicri:level="1"><nlm:affiliation>School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan.</nlm:affiliation><country xml:lang="fr">Taïwan</country><wicri:regionArea>School of Nursing, College of Medicine, National Taiwan University, Taipei</wicri:regionArea><wicri:noRegion>Taipei</wicri:noRegion></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="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="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, Helen DeVos Children's Hospital, Grand Rapids, MI, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI</wicri:regionArea><placeName><region type="state">Michigan</region></placeName></affiliation></author><author><name sortKey="Subramanyan, Raghavan" sort="Subramanyan, Raghavan" uniqKey="Subramanyan R" first="Raghavan" last="Subramanyan">Raghavan Subramanyan</name><affiliation wicri:level="1"><nlm:affiliation>Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.</nlm:affiliation><country xml:lang="fr">Inde</country><wicri:regionArea>Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai</wicri:regionArea><wicri:noRegion>Chennai</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="Eriksen, Katrine" sort="Eriksen, Katrine" uniqKey="Eriksen K" first="Katrine" last="Eriksen">Katrine Eriksen</name><affiliation wicri:level="3"><nlm:affiliation>Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway.</nlm:affiliation><country xml:lang="fr">Norvège</country><wicri:regionArea>Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo</wicri:regionArea><placeName><settlement type="city">Oslo</settlement><region nuts="2">Østlandet</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>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of 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="Berghammer, Malin" sort="Berghammer, Malin" uniqKey="Berghammer M" first="Malin" last="Berghammer">Malin Berghammer</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan</wicri:regionArea><wicri:noRegion>Trollhättan</wicri:noRegion></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 Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Public Health and Clinical Medicine, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Mackie, Andrew S" sort="Mackie, Andrew S" uniqKey="Mackie A" first="Andrew S" last="Mackie">Andrew S. Mackie</name><affiliation wicri:level="3"><nlm:affiliation>Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton</wicri:regionArea><placeName><settlement type="city">Edmonton</settlement><region type="state">Alberta</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="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="Veldtman, Gruschen" sort="Veldtman, Gruschen" uniqKey="Veldtman G" first="Gruschen" last="Veldtman">Gruschen Veldtman</name><affiliation wicri:level="2"><nlm:affiliation>Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH</wicri:regionArea><placeName><region type="state">Ohio</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>Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, 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="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>Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA</wicri:regionArea><placeName><region type="state">Californie</region></placeName></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>Adult Congenital Heart Disease Center, 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>Adult Congenital Heart Disease Center, 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="Callus, Edward" sort="Callus, Edward" uniqKey="Callus E" first="Edward" last="Callus">Edward Callus</name><affiliation wicri:level="3"><nlm:affiliation>Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy.</nlm:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Clinical Psychology Service, IRCCS Policlinico San Donato, Milan</wicri:regionArea><placeName><settlement type="city">Milan</settlement><region nuts="2">Lombardie</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>Adult Congenital Heart Disease Center 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>Adult Congenital Heart Disease Center 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="Van Bulck, Liesbet" sort="Van Bulck, Liesbet" uniqKey="Van Bulck L" first="Liesbet" last="Van Bulck">Liesbet Van Bulck</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</wicri:noRegion></affiliation></author><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 Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</wicri:noRegion></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2018">2018</date><idno type="RBID">pubmed:29107358</idno><idno type="pmid">29107358</idno><idno type="doi">10.1016/j.ijcard.2017.10.064</idno><idno type="wicri:Area/Main/Corpus">000999</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Corpus" wicri:corpus="PubMed">000999</idno><idno type="wicri:Area/Main/Curation">000999</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Curation">000999</idno><idno type="wicri:Area/Main/Exploration">000999</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors.</title><author><name sortKey="Moons, Philip" sort="Moons, Philip" uniqKey="Moons P" first="Philip" last="Moons">Philip Moons</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Electronic address: philip.moons@kuleuven.be.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg</wicri:regionArea><wicri:noRegion>Gothenburg</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="2"><nlm:affiliation>Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR</wicri:regionArea><placeName><region type="state">Oregon</region></placeName></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>School Psychology and Development in Context, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>School Psychology and Development in Context, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</wicri:noRegion></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>Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern, Switzerland.</nlm:affiliation><country xml:lang="fr">Suisse</country><wicri:regionArea>Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern</wicri:regionArea><placeName><settlement type="city">Berne</settlement><region type="région" nuts="3">Canton de Berne</region></placeName></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>Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</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="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>Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Cardiology, Academic Medical Center, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation></author><author><name sortKey="Yang, Hsiao Ling" sort="Yang, Hsiao Ling" uniqKey="Yang H" first="Hsiao-Ling" last="Yang">Hsiao-Ling Yang</name><affiliation wicri:level="1"><nlm:affiliation>School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan.</nlm:affiliation><country xml:lang="fr">Taïwan</country><wicri:regionArea>School of Nursing, College of Medicine, National Taiwan University, Taipei</wicri:regionArea><wicri:noRegion>Taipei</wicri:noRegion></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="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="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, Helen DeVos Children's Hospital, Grand Rapids, MI, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI</wicri:regionArea><placeName><region type="state">Michigan</region></placeName></affiliation></author><author><name sortKey="Subramanyan, Raghavan" sort="Subramanyan, Raghavan" uniqKey="Subramanyan R" first="Raghavan" last="Subramanyan">Raghavan Subramanyan</name><affiliation wicri:level="1"><nlm:affiliation>Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.</nlm:affiliation><country xml:lang="fr">Inde</country><wicri:regionArea>Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai</wicri:regionArea><wicri:noRegion>Chennai</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="Eriksen, Katrine" sort="Eriksen, Katrine" uniqKey="Eriksen K" first="Katrine" last="Eriksen">Katrine Eriksen</name><affiliation wicri:level="3"><nlm:affiliation>Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway.</nlm:affiliation><country xml:lang="fr">Norvège</country><wicri:regionArea>Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo</wicri:regionArea><placeName><settlement type="city">Oslo</settlement><region nuts="2">Østlandet</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>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of 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="Berghammer, Malin" sort="Berghammer, Malin" uniqKey="Berghammer M" first="Malin" last="Berghammer">Malin Berghammer</name><affiliation wicri:level="1"><nlm:affiliation>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan</wicri:regionArea><wicri:noRegion>Trollhättan</wicri:noRegion></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 Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Public Health and Clinical Medicine, Umeå University, Umeå</wicri:regionArea><wicri:noRegion>Umeå</wicri:noRegion></affiliation></author><author><name sortKey="Mackie, Andrew S" sort="Mackie, Andrew S" uniqKey="Mackie A" first="Andrew S" last="Mackie">Andrew S. Mackie</name><affiliation wicri:level="3"><nlm:affiliation>Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Canada.</nlm:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton</wicri:regionArea><placeName><settlement type="city">Edmonton</settlement><region type="state">Alberta</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="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="Veldtman, Gruschen" sort="Veldtman, Gruschen" uniqKey="Veldtman G" first="Gruschen" last="Veldtman">Gruschen Veldtman</name><affiliation wicri:level="2"><nlm:affiliation>Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH</wicri:regionArea><placeName><region type="state">Ohio</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>Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, 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="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>Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA</wicri:regionArea><placeName><region type="state">Californie</region></placeName></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>Adult Congenital Heart Disease Center, 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>Adult Congenital Heart Disease Center, 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="Callus, Edward" sort="Callus, Edward" uniqKey="Callus E" first="Edward" last="Callus">Edward Callus</name><affiliation wicri:level="3"><nlm:affiliation>Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy.</nlm:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Clinical Psychology Service, IRCCS Policlinico San Donato, Milan</wicri:regionArea><placeName><settlement type="city">Milan</settlement><region nuts="2">Lombardie</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>Adult Congenital Heart Disease Center 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>Adult Congenital Heart Disease Center 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="Van Bulck, Liesbet" sort="Van Bulck, Liesbet" uniqKey="Van Bulck L" first="Liesbet" last="Van Bulck">Liesbet Van Bulck</name><affiliation wicri:level="1"><nlm:affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</wicri:noRegion></affiliation></author><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 Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</nlm:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven</wicri:regionArea><wicri:noRegion>Leuven</wicri:noRegion></affiliation></author></analytic><series><title level="j">International journal of cardiology</title><idno type="eISSN">1874-1754</idno><imprint><date when="2018" type="published">2018</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult (MeSH)</term><term>Cross-Sectional Studies (MeSH)</term><term>Delivery of Health Care (methods)</term><term>Delivery of Health Care (standards)</term><term>Female (MeSH)</term><term>Heart Defects, Congenital (diagnosis)</term><term>Heart Defects, Congenital (epidemiology)</term><term>Heart Defects, Congenital (therapy)</term><term>Humans (MeSH)</term><term>Internationality (MeSH)</term><term>Male (MeSH)</term><term>Patient Reported Outcome Measures (MeSH)</term><term>Self Report (standards)</term><term>Socioeconomic Factors (MeSH)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Adulte (MeSH)</term><term>Autorapport (normes)</term><term>Cardiopathies congénitales (diagnostic)</term><term>Cardiopathies congénitales (thérapie)</term><term>Cardiopathies congénitales (épidémiologie)</term><term>Facteurs socioéconomiques (MeSH)</term><term>Femelle (MeSH)</term><term>Humains (MeSH)</term><term>Internationalité (MeSH)</term><term>Mesures des résultats rapportés par les patients (MeSH)</term><term>Mâle (MeSH)</term><term>Prestations des soins de santé (méthodes)</term><term>Prestations des soins de santé (normes)</term><term>Études transversales (MeSH)</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="methods" xml:lang="en"><term>Delivery of Health Care</term></keywords><keywords scheme="MESH" qualifier="méthodes" xml:lang="fr"><term>Prestations des soins de santé</term></keywords><keywords scheme="MESH" qualifier="normes" xml:lang="fr"><term>Autorapport</term><term>Prestations des soins de santé</term></keywords><keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Delivery of Health Care</term><term>Self Report</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Heart Defects, Congenital</term></keywords><keywords scheme="MESH" qualifier="thérapie" xml:lang="fr"><term>Cardiopathies congénitales</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>Patient Reported Outcome Measures</term><term>Socioeconomic Factors</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adulte</term><term>Facteurs socioéconomiques</term><term>Femelle</term><term>Humains</term><term>Internationalité</term><term>Mesures des résultats rapportés par les patients</term><term>Mâle</term><term>Études transversales</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>AIMS</b></p><p>Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.</p></div><div type="abstract" xml:lang="en"><p><b>METHODS AND RESULTS</b></p><p>Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSIONS</b></p><p>This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.</p></div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">29107358</PMID><DateCompleted><Year>2018</Year><Month>07</Month><Day>19</Day></DateCompleted><DateRevised><Year>2018</Year><Month>07</Month><Day>19</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1874-1754</ISSN><JournalIssue CitedMedium="Internet"><Volume>251</Volume><PubDate><Year>2018</Year><Month>Jan</Month><Day>15</Day></PubDate></JournalIssue><Title>International journal of cardiology</Title><ISOAbbreviation>Int J Cardiol</ISOAbbreviation></Journal><ArticleTitle>Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors.</ArticleTitle><Pagination><MedlinePgn>34-41</MedlinePgn></Pagination><ELocationID EIdType="pii" ValidYN="Y">S0167-5273(17)35338-X</ELocationID><ELocationID EIdType="doi" ValidYN="Y">10.1016/j.ijcard.2017.10.064</ELocationID><Abstract><AbstractText Label="AIMS" NlmCategory="OBJECTIVE">Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.</AbstractText><AbstractText Label="METHODS AND RESULTS" NlmCategory="RESULTS">Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.</AbstractText><CopyrightInformation>Copyright © 2017 Elsevier B.V. All rights reserved.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Moons</LastName><ForeName>Philip</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Electronic address: philip.moons@kuleuven.be.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kovacs</LastName><ForeName>Adrienne H</ForeName><Initials>AH</Initials><AffiliationInfo><Affiliation>Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Luyckx</LastName><ForeName>Koen</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>School Psychology and Development in Context, KU Leuven - University of Leuven, Leuven, Belgium.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Thomet</LastName><ForeName>Corina</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern, Switzerland.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Budts</LastName><ForeName>Werner</ForeName><Initials>W</Initials><AffiliationInfo><Affiliation>Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Enomoto</LastName><ForeName>Junko</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Sluman</LastName><ForeName>Maayke A</ForeName><Initials>MA</Initials><AffiliationInfo><Affiliation>Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Yang</LastName><ForeName>Hsiao-Ling</ForeName><Initials>HL</Initials><AffiliationInfo><Affiliation>School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Jackson</LastName><ForeName>Jamie L</ForeName><Initials>JL</Initials><AffiliationInfo><Affiliation>Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Khairy</LastName><ForeName>Paul</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Cook</LastName><ForeName>Stephen C</ForeName><Initials>SC</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Subramanyan</LastName><ForeName>Raghavan</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Alday</LastName><ForeName>Luis</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Division of Cardiology, Hospital de Niños, Córdoba, Argentina.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Eriksen</LastName><ForeName>Katrine</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Dellborg</LastName><ForeName>Mikael</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Berghammer</LastName><ForeName>Malin</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Johansson</LastName><ForeName>Bengt</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Mackie</LastName><ForeName>Andrew S</ForeName><Initials>AS</Initials><AffiliationInfo><Affiliation>Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Menahem</LastName><ForeName>Samuel</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Caruana</LastName><ForeName>Maryanne</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Veldtman</LastName><ForeName>Gruschen</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Soufi</LastName><ForeName>Alexandra</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Fernandes</LastName><ForeName>Susan M</ForeName><Initials>SM</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>White</LastName><ForeName>Kamila</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Callus</LastName><ForeName>Edward</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kutty</LastName><ForeName>Shelby</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Van Bulck</LastName><ForeName>Liesbet</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Apers</LastName><ForeName>Silke</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><CollectiveName>APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)</CollectiveName></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016430">Clinical Trial</PublicationType><PublicationType UI="D016428">Journal Article</PublicationType><PublicationType UI="D016448">Multicenter Study</PublicationType><PublicationType UI="D064888">Observational Study</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2017</Year><Month>10</Month><Day>21</Day></ArticleDate></Article><MedlineJournalInfo><Country>Netherlands</Country><MedlineTA>Int J Cardiol</MedlineTA><NlmUniqueID>8200291</NlmUniqueID><ISSNLinking>0167-5273</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000328" MajorTopicYN="N">Adult</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D003430" MajorTopicYN="N">Cross-Sectional Studies</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D003695" MajorTopicYN="N">Delivery of Health Care</DescriptorName><QualifierName UI="Q000379" MajorTopicYN="N">methods</QualifierName><QualifierName UI="Q000592" MajorTopicYN="Y">standards</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006330" MajorTopicYN="N">Heart Defects, Congenital</DescriptorName><QualifierName UI="Q000175" MajorTopicYN="N">diagnosis</QualifierName><QualifierName UI="Q000453" MajorTopicYN="Y">epidemiology</QualifierName><QualifierName UI="Q000628" MajorTopicYN="N">therapy</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D038622" MajorTopicYN="Y">Internationality</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000071066" MajorTopicYN="Y">Patient Reported Outcome Measures</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D057566" MajorTopicYN="N">Self Report</DescriptorName><QualifierName UI="Q000592" MajorTopicYN="N">standards</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D012959" MajorTopicYN="Y">Socioeconomic Factors</DescriptorName></MeshHeading></MeshHeadingList><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Cross-cultural comparison</Keyword><Keyword MajorTopicYN="N">Healthcare system</Keyword><Keyword MajorTopicYN="N">Heart defects, congenital</Keyword><Keyword MajorTopicYN="N">Multilevel analysis</Keyword><Keyword MajorTopicYN="N">Patient-reported outcomes</Keyword><Keyword MajorTopicYN="N">Quality of life</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2017</Year><Month>08</Month><Day>28</Day></PubMedPubDate><PubMedPubDate PubStatus="revised"><Year>2017</Year><Month>09</Month><Day>23</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2017</Year><Month>10</Month><Day>12</Day></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2017</Year><Month>11</Month><Day>7</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2018</Year><Month>7</Month><Day>20</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2017</Year><Month>11</Month><Day>7</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">29107358</ArticleId><ArticleId IdType="pii">S0167-5273(17)35338-X</ArticleId><ArticleId IdType="doi">10.1016/j.ijcard.2017.10.064</ArticleId></ArticleIdList></PubmedData></pubmed><affiliations><list><country><li>Argentine</li><li>Australie</li><li>Belgique</li><li>Canada</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>Alberta</li><li>Auvergne-Rhône-Alpes</li><li>Californie</li><li>Canton de Berne</li><li>Hollande-Septentrionale</li><li>Lombardie</li><li>Michigan</li><li>Missouri (État)</li><li>Nebraska</li><li>Ohio</li><li>Oregon</li><li>Québec</li><li>Rhône-Alpes</li><li>Victoria (État)</li><li>Østlandet</li></region><settlement><li>Amsterdam</li><li>Berne</li><li>Edmonton</li><li>Lyon</li><li>Melbourne</li><li>Milan</li><li>Montréal</li><li>Oslo</li></settlement></list><tree><country name="Suède"><noRegion><name sortKey="Moons, Philip" sort="Moons, Philip" uniqKey="Moons P" first="Philip" last="Moons">Philip Moons</name></noRegion><name sortKey="Berghammer, Malin" sort="Berghammer, Malin" uniqKey="Berghammer M" first="Malin" last="Berghammer">Malin Berghammer</name><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="États-Unis"><region name="Oregon"><name sortKey="Kovacs, Adrienne H" sort="Kovacs, Adrienne H" uniqKey="Kovacs A" first="Adrienne H" last="Kovacs">Adrienne H. Kovacs</name></region><name sortKey="Cook, Stephen C" sort="Cook, Stephen C" uniqKey="Cook S" first="Stephen C" last="Cook">Stephen C. Cook</name><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="Belgique"><noRegion><name sortKey="Luyckx, Koen" sort="Luyckx, Koen" uniqKey="Luyckx K" first="Koen" last="Luyckx">Koen Luyckx</name></noRegion><name sortKey="Apers, Silke" sort="Apers, Silke" uniqKey="Apers S" first="Silke" last="Apers">Silke Apers</name><name sortKey="Budts, Werner" sort="Budts, Werner" uniqKey="Budts W" first="Werner" last="Budts">Werner Budts</name><name sortKey="Van Bulck, Liesbet" sort="Van Bulck, Liesbet" uniqKey="Van Bulck L" first="Liesbet" last="Van Bulck">Liesbet Van Bulck</name></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="Japon"><noRegion><name sortKey="Enomoto, Junko" sort="Enomoto, Junko" uniqKey="Enomoto J" first="Junko" last="Enomoto">Junko Enomoto</name></noRegion></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="Taïwan"><noRegion><name sortKey="Yang, Hsiao Ling" sort="Yang, Hsiao Ling" uniqKey="Yang H" first="Hsiao-Ling" last="Yang">Hsiao-Ling Yang</name></noRegion></country><country name="Canada"><region name="Québec"><name sortKey="Khairy, Paul" sort="Khairy, Paul" uniqKey="Khairy P" first="Paul" last="Khairy">Paul Khairy</name></region><name sortKey="Mackie, Andrew S" sort="Mackie, Andrew S" uniqKey="Mackie A" first="Andrew S" last="Mackie">Andrew S. Mackie</name></country><country name="Inde"><noRegion><name sortKey="Subramanyan, Raghavan" sort="Subramanyan, Raghavan" uniqKey="Subramanyan R" first="Raghavan" last="Subramanyan">Raghavan Subramanyan</name></noRegion></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="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="Malte"><noRegion><name sortKey="Caruana, Maryanne" sort="Caruana, Maryanne" uniqKey="Caruana M" first="Maryanne" last="Caruana">Maryanne Caruana</name></noRegion></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="Italie"><region name="Lombardie"><name sortKey="Callus, Edward" sort="Callus, Edward" uniqKey="Callus E" first="Edward" last="Callus">Edward Callus</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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