Heart Failure and Patient‐Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
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- Chun‐Wei Lu
- Department of Pediatrics National Taiwan University Hospital Taipei Taiwan
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- Jou‐Kou Wang
- Department of Pediatrics National Taiwan University Hospital Taipei Taiwan
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- Hsiao‐Ling Yang
- School of Nursing College of Medicine National Taiwan University Taipei Taiwan
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- Adrienne H. Kovacs
- Toronto Adult Congenital Heart Disease ProgramPeter Munk Cardiac CenterUniversity Health NetworkUniversity of Toronto Toronto Canada
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- Koen Luyckx
- KU Leuven School Psychology and Development in Context KU Leuven Leuven Belgium
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- Francisco Javier Ruperti‐Repilado
- Center for Congenital Heart Disease Department of Cardiology Inselspital ‐ Bern University HospitalUniversity of Bern Bern Switzerland
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- Alexander Van De Bruaene
- Division of Congenital and Structural Cardiology University Hospitals Leuven Leuven Belgium
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- Junko Enomoto
- Department of Education Toyo University Tokyo Japan
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- Maayke A. Sluman
- Coronel Institute of Occupational HealthAmsterdam UMCUniversity of Amsterdam Amsterdam The Netherlands
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- Jamie L. Jackson
- Center for Biobehavioral Health Nationwide Children’s Hospital Columbus OH
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- Paul Khairy
- Adult Congenital Heart CenterMontreal Heart InstituteUniversité de Montréal Montreal Canada
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- Stephen C. Cook
- Indiana University Health Adult Congenital Heart Disease Program Indianapolis IN
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- Shanthi Chidambarathanu
- Pediatric Cardiology Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation) Chennai India
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- Luis Alday
- Division of Cardiology Hospital de Niños Córdoba Argentina
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- Erwin Oechslin
- Toronto Adult Congenital Heart Disease ProgramPeter Munk Cardiac CenterUniversity Health NetworkUniversity of Toronto Toronto Canada
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- Katrine Eriksen
- Adult Congenital Heart Disease Center Oslo University Hospital ‐ Rikshospitalet Oslo Norway
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- Mikael Dellborg
- Adult Congenital Heart Unit Sahlgrenska University Hospital/Östra Gothenburg Sweden
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- Malin Berghammer
- Department of Health Sciences University West Trollhättan Sweden
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- Bengt Johansson
- Department of Public Health and Clinical Medicine Umeå University Umeå Sweden
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- Andrew S. Mackie
- Division of Cardiology Stollery Children’s HospitalUniversity of Alberta Edmonton Canada
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- Samuel Menahem
- Monash HeartMonash Medical CentreMonash University Melbourne Australia
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- Maryanne Caruana
- Department of Cardiology Mater Dei Hospital Birkirkara Bypass Malta
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- Gruschen Veldtman
- Adult Congenital Heart Disease CenterCincinnati Children's Hospital Medical Center Cincinnati OH
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- Alexandra Soufi
- Department of Cardiac Rehabilitation Médipôle Lyon‐Villeurbanne Lyon France
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- Susan M. Fernandes
- Adult Congenital Heart Program at StanfordLucile Packard Children’s Hospital and Stanford Health Care Palo Alto CA
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- Kamila White
- Adult Congenital Heart Disease CenterWashington University and Barnes Jewish Heart & Vascular CenterUniversity of Missouri Saint Louis MO
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- Edward Callus
- Clinical Psychology Service IRCCS Policlinico San Donato Milan Italy
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- Shelby Kutty
- Adult Congenital Heart Disease Center University of NebraskaMedical Center/Children’s Hospital and Medical Center Omaha NE
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- Silke Apers
- KU Leuven Department of Public Health and Primary Care KU Leuven Leuven Belgium
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- Philip Moons
- Centre for Person‐Centred Care (GPCC) University of Gothenburg Gothenburg Sweden
説明
<jats:sec xml:lang="en"> <jats:title>Background</jats:title> <jats:p xml:lang="en">Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient‐report outcomes in adults with congenital heart disease.</jats:p> </jats:sec> <jats:sec xml:lang="en"> <jats:title>Methods and Results</jats:title> <jats:p xml:lang="en">As part of the APPROACH‐IS (Assessment of Patterns of Patient‐Reported Outcomes in Adults with Congenital Heart disease—International Study), we collected data on HF status and patient‐reported outcomes in 3959 patients from 15 countries across 5 continents. Patient‐report outcomes were: perceived health status (12‐item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence‐13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter‐defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms.</jats:p> </jats:sec> <jats:sec xml:lang="en"> <jats:title>Conclusions</jats:title> <jats:p xml:lang="en">HF in adults with congenital heart disease is associated with poorer patient‐reported outcomes, with large effect sizes for physical functioning and illness perception.</jats:p> </jats:sec> <jats:sec xml:lang="en"> <jats:title>Registration</jats:title> <jats:p xml:lang="en"> URL: <jats:ext-link xmlns:xlink="http://www.w3.org/1999/xlink" ext-link-type="uri" xlink:href="https://clinicaltrials.gov">https://clinicaltrials.gov</jats:ext-link> ; Unique identifier: NCT02150603. </jats:p> </jats:sec>
収録刊行物
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- Journal of the American Heart Association
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Journal of the American Heart Association 11 (9), 2022-05-03
Ovid Technologies (Wolters Kluwer Health)