Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries.

Journal: Journal of the American Heart Association

Volume: 11

Issue: 9

Year of Publication: 2022

Affiliated Institutions:  Department of Pediatrics National Taiwan University Hospital Taipei Taiwan. School of Nursing College of Medicine National Taiwan University Taipei Taiwan. Toronto Adult Congenital Heart Disease ProgramPeter Munk Cardiac CenterUniversity Health NetworkUniversity of Toronto Toronto Canada. KU Leuven School Psychology and Development in Context KU Leuven Leuven Belgium. Center for Congenital Heart Disease Department of Cardiology Inselspital - Bern University HospitalUniversity of Bern Bern Switzerland. Division of Congenital and Structural Cardiology University Hospitals Leuven Leuven Belgium. Department of Education Toyo University Tokyo Japan. Coronel Institute of Occupational HealthAmsterdam UMCUniversity of Amsterdam Amsterdam The Netherlands. Center for Biobehavioral Health Nationwide Children's Hospital Columbus OH. Adult Congenital Heart CenterMontreal Heart InstituteUniversité de Montréal Montreal Canada. Indiana University Health Adult Congenital Heart Disease Program Indianapolis IN. Pediatric Cardiology Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation) Chennai India. Division of Cardiology Hospital de Niños Córdoba Argentina. Adult Congenital Heart Disease Center Oslo University Hospital - Rikshospitalet Oslo Norway. Adult Congenital Heart Unit Sahlgrenska University Hospital/Östra Gothenburg Sweden. Department of Health Sciences University West Trollhättan Sweden. Department of Public Health and Clinical Medicine Umeå University Umeå Sweden. Division of Cardiology Stollery Children's HospitalUniversity of Alberta Edmonton Canada. Monash HeartMonash Medical CentreMonash University Melbourne Australia. Department of Cardiology Mater Dei Hospital Birkirkara Bypass Malta. Adult Congenital Heart Disease CenterCincinnati Children's Hospital Medical Center Cincinnati OH. Department of Cardiac Rehabilitation Médipôle Lyon-Villeurbanne Lyon France. Adult Congenital Heart Program at StanfordLucile Packard Children's Hospital and Stanford Health Care Palo Alto CA. Adult Congenital Heart Disease CenterWashington University and Barnes Jewish Heart & Vascular CenterUniversity of Missouri Saint Louis MO. Clinical Psychology Service IRCCS Policlinico San Donato Milan Italy. Adult Congenital Heart Disease Center University of NebraskaMedical Center/Children's Hospital and Medical Center Omaha NE. KU Leuven Department of Public Health and Primary Care KU Leuven Leuven Belgium. Centre for Person-Centred Care (GPCC) University of Gothenburg Gothenburg Sweden.

Abstract summary 

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.

Authors & Co-authors:  Lu Chun-Wei CW Wang Jou-Kou JK Yang Hsiao-Ling HL Kovacs Adrienne H AH Luyckx Koen K Ruperti-Repilado Francisco Javier FJ Van De Bruaene Alexander A Enomoto Junko J Sluman Maayke A MA Jackson Jamie L JL Khairy Paul P Cook Stephen C SC Chidambarathanu Shanthi S Alday Luis L Oechslin Erwin E Eriksen Katrine K Dellborg Mikael M Berghammer Malin M Johansson Bengt B Mackie Andrew S AS Menahem Samuel S Caruana Maryanne M Veldtman Gruschen G Soufi Alexandra A Fernandes Susan M SM White Kamila K Callus Edward E Kutty Shelby S Apers Silke S Moons Philip P

Study Outcome 

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Statistics
Citations :  Verheugt CL, Uiterwaal CSPM, van der Velde ET, Meijboom FJ, Pieper PG, van Dijk APJ, Vliegen HW, Grobbee DE, Mulder BJM. Mortality in adult congenital heart disease. Eur Heart J. 2010;31:1220–1229. doi: 10.1093/eurheartj/ehq032
Authors :  31
Identifiers
Doi : e024993
SSN : 2047-9980
Study Population
Male,Female
Mesh Terms
Adult
Other Terms
adult congenital heart disease;heart failure;patient‐reported outcomes;quality of life
Study Design
Cross Sectional Study
Study Approach
Country of Study
Publication Country
England