Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.KU Leuven School Psychology and Development in Context, , KU Leuven, , Leuven (BEL).
Center for Congenital Heart Disease , Department of Cardiology, , Inselspital ‐ Bern University Hospital, University of Bern, , Bern (CHE).
KU Leuven Department of Cardiovascular Sciences, , KU Leuven, , Leuven (BEL).
Department of Education, , Toyo University, , Tokyo, (JPN).
Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, , Amsterdam, (NLD).
Center for Biobehavioral Health, , Nationwide Children’s Hospital, , Columbus, (USA).
Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, , Montreal, (CAN).
Indiana University Health Adult Congenital Heart Disease Program, , Indianapolis (USA).
Pediatric Cardiology, , Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), , Chennai (IND).
Division of Cardiology, , Hospital de Niños, , Córdoba (ARG).
Toronto Adult Congenital Heart Disease Program, Peter Munk Cardiac Center, University Health Network, University of Toronto (CAN).
Adult Congenital Heart Disease Center, , Oslo University Hospital ‐ Rikshospitalet, , Oslo, (NOR).
Institute of Medicine, , The Sahlgrenska Academy at University of Gothenburg, , Gothenburg (SWE).
Department of Public Health and Clinical Medicine, , Umeå University, , Umeå (SWE).
Division of Cardiology, , Stollery Children’s Hospital, University of Alberta, , Edmonton (CAN).
Monash Heart, Monash Medical Centre, Monash University, , Melbourne (AUS).
Department of Cardiology, , Mater Dei Hospital, , Birkirkara Bypass (MLT).
Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, , Cincinnati, , OH (USA).
Department of Cardiac Rehabilitation, , Médipôle Lyon‐Villeurbanne, , Lyon (FRA).
Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, , Palo Alto, , CA (USA).
Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, , Saint Louis, , MO (USA).
Department of Biomedical Sciences for Health, , University of Milan, , Milan (ITA).
Adult Congenital Heart Disease Center University of Nebraska, Medical Center/Children’s Hospital and Medical Center, , Omaha, , NE Taussig Heart Center, Johns Hopkins School of Medicine, , Baltimore, , MD (USA).
KU Leuven Department of Public Health and Primary Care, , KU Leuven, , Leuven (BEL).
KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, Box 7001, B‐3000 Leuven, (BEL).
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2022 (English)In: Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease, E-ISSN 2047-9980, Vol. 11, no 9, article id e024993Article in journal (Refereed) Published
Abstract [en]
Background 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. Methods and Results 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. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT02150603.
Place, publisher, year, edition, pages
2022. Vol. 11, no 9, article id e024993
Keywords [en]
adult congenital heart disease, heart failure, patient‐reported outcomes, quality of life
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-18398DOI: 10.1161/JAHA.121.024993ISI: 000789861900032PubMedID: 35470715Scopus ID: 2-s2.0-85129781477OAI: oai:DiVA.org:hv-18398DiVA, id: diva2:1699480
Funder
Swedish Heart Lung Foundation, 20130607
Note
This work was supported by the Research Fund—KU Leuven (Leuven, Belgium) through grant OT/11/033 to K.L. and P.M.; by the Swedish Heart‐Lung Foundation (Sweden) through grant number 20130607 to M.D.; by the University of Gothenburg Centre for Person‐centred Care (Gothenburg, Sweden) to M.D. and P.M.; and by the Cardiac Children's Foundation (Taiwan) through grant CCF2013_02 to H.L.Y. Furthermore, this work was endorsed by and conducted in collaboration with the International Society for Adult Congenital Heart Disease.
2022-09-282022-09-282024-07-04Bibliographically approved