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Implantable Cardioverter-Defibrillators and Patient-Reported Outcomes in Adults with Congenital Heart Disease: an International Study.

Journal article
Authors Valérie Lévesque
Laurence Laplante
Azadeh Shohoudi
Silke Apers
Adrienne H Kovacs
Koen Luyckx
Corina Thomet
Werner Budts
Junko Enomoto
Maayke A Sluman
Chun-Wei Lu
Jamie L Jackson
Stephen C Cook
Shanthi Chidambarathanu
Luis Alday
Katrine Eriksen
Mikael Dellborg
Malin Berghammer
Bengt Johansson
Andrew S Mackie
Samuel Menahem
Maryanne Caruana
Gruschen Veldtman
Alexandra Soufi
Susan M Fernandes
Kamila White
Edward Callus
Shelby Kutty
Judith Brouillette
Benjamin Casteigt
Philip Moons
Paul Khairy
Published in Heart rhythm
ISSN 1556-3871
Publication year 2019
Published at University of Gothenburg Centre for person-centred care (GPCC)
Institute of Health and Care Sciences
Institute of Medicine, Department of Molecular and Clinical Medicine
Language en
Subject categories Psychology, Health Sciences


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).We assessed and compared PROs in adults with CHD with and without ICDs.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.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.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.

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Utskriftsdatum: 2020-02-18