Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA (USA).
KU Leuven - University of Leuven, School Psychology and Child and Adolescent Development,Leuven, Belgium BEL); University of the Free State, UNIBS, Bloemfontein, South Africa (ZAF).
University of Bern, Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland (CHE).
Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium (BEL); KU Leuven - University of Leuven, KU Leuven Department of Cardiovascular Sciences, Leuven, Belgium (BEL)..
Department of Adult Congenital Heart Disease,Cardiovascular Center, Chiba, Chiba, Japan (JPN).
Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands (NLD); Department of Cardiology, Jeroen Bosch Hospital, Hertogenbosch, Amsterdam, the Netherlands (NLD).
Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan (TWN).
Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA (USA).
Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA (USA).
Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India (IND).
Monash University,Monash Medical Centre, Melbourne, Australia (AUS).
Department of Cardiology, Oslo University Hospital–Rikshospitalet, Oslo, Norway (NOR).
Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden; University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada (CAN).
Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia (AUS).
Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta (MLT).
Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA (USA).
Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France (FRA).
Department of Pediatrics and Medicine, Palo Alto, California USA (USA).
Washington University, Adult Congenital Heart Disease Center, USA (USA); University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missour USA (USA).
Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy (ITA); Università degli Studi di Milano, Department of Biomedical Sciences for Health, Milan, Italy (ITA).
University of Nebraska Medical Center, Adult Congenital Heart Disease Center, Children's Hospital and Medical Center, Omaha, NE, USA (USA).
Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
KU Leuven–University of Leuven, Leuven, Belgium (BEL); University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden; University of Cape Town, Department of Paediatrics and Child Health, Cape Town, South Africa (ZAF).
Université de Montréal, Montreal Heart Institute, Montreal, Canada (CAN).
BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are increasingly used to prevent sudden deaths in the growing population of adults with congenital heart disease (CHD). Yet, little is known about their impact on patient-reported outcomes (PROs).
OBJECTIVE: We assessed and compared PROs in adults with CHD with and without ICDs.
METHODS: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents.
RESULTS: A total of 3,188 patients were included: 107 with ICDs and 3,081 weight-matched controls without ICDs. ICD recipients averaged 40.1±12.4 years of age, with >95% having moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviours did not differ significantly in patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56, P=0.011). Those with secondary compared to primary prevention indications had a significantly lower quality of life score (linear analogue scale 72.0±23.1 versus 79.2±13.0, P=0.047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (versus controls) from Switzerland, Argentina, Taiwan, and USA.
CONCLUSIONS: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.
2020. Vol. 17, no 5, p. 768-776
adult congenital heart disease, implantable cardioverter-defibrillator, patient-reported outcomes, quality of life, sudden cardiac death
Funders:Research Fund-KU Leuven (Leuven, Belgium) [OT/11/033];Cardiac Children's Foundation (Taiwan) [CCF2013_02]