Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
Journal
Journal of the American Heart Association
Journal Volume
11
Journal Issue
9
Date Issued
2022-05-03
Author(s)
Kovacs, Adrienne H
Luyckx, Koen
Ruperti-Repilado, Francisco Javier
Van De Bruaene, Alexander
Enomoto, Junko
Sluman, Maayke A
Jackson, Jamie L
Khairy, Paul
Cook, Stephen C
Chidambarathanu, Shanthi
Alday, Luis
Oechslin, Erwin
Eriksen, Katrine
Dellborg, Mikael
Berghammer, Malin
Johansson, Bengt
Mackie, Andrew S
Menahem, Samuel
Caruana, Maryanne
Veldtman, Gruschen
Soufi, Alexandra
Fernandes, Susan M
White, Kamila
Callus, Edward
Kutty, Shelby
Apers, Silke
Moons, Philip
Abstract
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.
Subjects
adult congenital heart disease; heart failure; patient‐reported outcomes; quality of life
SDGs
Publisher
WILEY
Type
journal article