Pediatric and Congenital EPImplantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study
Introduction
Sudden cardiac death is a leading cause of mortality in adults with congenital heart disease (CHD) such that defibrillators are increasingly implanted in this growing population.1 Although most patients seem to adjust well to this therapy, considerable psychosocial issues have been reported in the general population with an implantable cardioverter-defibrillator (ICD).2 Nevertheless, there is a paucity of data that specifically address the impact of ICDs on quality of life and other patient-reported outcomes (PROs) in adults with CHD. Understanding the influence of ICDs on PROs is of particular importance considering the high baseline prevalence of psychosocial concerns in adults with CHD, including generalized anxiety, depression, and difficulties coping with a lifelong medical condition.3 Indeed, targeted therapy to reduce psychological distress has been recognized as an important component of comprehensive care for adults with CHD.4
Therefore, we sought to assess the impact of ICDs in the largest study of PROs in adults with CHD, the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease–International Study (APPROACH-IS), which enrolled >4000 patients from 15 countries across 5 continents.5 Outcomes of interest included quality of life, perceived health status, psychological distress, sense of coherence, illness perception, and health behaviors.
Section snippets
Patient selection
Design and methods of APPROACH-IS have previously been described (ClinicalTrials.gov Identifier NCT02150603).5 In brief, the study included adults (age ≥18 years) diagnosed with CHD before age 10 years with the physical, cognitive, and language capabilities required to complete self-reported questionnaires. A total of 4028 patients from 24 centers were recruited from the following countries via the International Society for Adult Congenital Heart Disease (ISACHD): Argentina, Australia, Belgium,
Study population
A total of 3188 patients met inclusion criteria for the APPROACH-IS ICD study: 107 with ICDs and 3081 weight-matched controls without ICDs. Patients with ICDs were distributed according to the following countries of domicile: Argentina 3, Australia 2, Belgium 10, Canada 16, Italy 1, Japan 3, Norway 12, Sweden 1, Switzerland 6, Taiwan 3, the Netherlands 10, and the United States 40. Characteristics of the 2 matched groups are summarized in Table 2. No statistically significant difference was
Discussion
To our knowledge, this is the largest study to assess the impact of ICDs on PROs in adults with CHD. Main findings include the following: (1) perceived health status, psychological distress, sense of coherence, and health behaviors are comparable in patients with and without ICDs, and in those with primary vs secondary prevention indications; (2) ICD recipients perceive their illness as more threatening than matched controls without ICDs; (3) the quality-of-life score (LAS) is significantly
Conclusion
In a large international study of PROs in adults with CHD, perceived health status, psychological distress, sense of coherence, and health behaviors were comparable in those with and without ICDs. However, ICDs were associated with a more threatening perception of illness. Patients with ICDs implanted for secondary prevention reported a worse quality-of-life score than their counterparts with primary prevention indications despite adjusting for complexity of CHD, heart failure, and other
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Implantable Cardioverter-Defibrillators in Adults With Congenital Heart Disease: Toward the More Global Assessment of Healthspan
2023, Canadian Journal of CardiologyAtrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study
2021, Heart RhythmCitation Excerpt :However, in patients with CHD, older age, severity of illness, and more advanced functional class symptoms predict worse PRO scores.31–33 Moreover, the presence of an implantable cardioverter-defibrillator has been associated with a more threatening view of illness in adults with CHD, with a worse quality of life in those with secondary prevention indications.34 The current study adds to the growing knowledge base by demonstrating that atrial arrhythmias should be considered among the important predictors of worse PROs, with an influence that extends across a broad spectrum of domains.
Selection of the best of 2020 in congenital heart disease
2021, REC: CardioClinicsHeart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
2022, Journal of the American Heart Association
This work was supported by the Research Fund–KU Leuven (Leuven, Belgium) Grant OT/11/033; Swedish Heart-Lung Foundation Grant 20130607; University of Gothenburg Centre for Person-centred Care; and Cardiac Children's Foundation (Taiwan) Grant CCF2013_02.