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

2022; Wiley; Volume: 11; Issue: 9 Linguagem: Inglês

10.1161/jaha.121.024993

2047-9980

Chun‐Wei Lu, Jou‐Kou Wang, Hsiao‐Ling Yang, Adrienne H. Kovacs, Koen Luyckx, Francisco Javier Ruperti‐Repilado, Alexander Van De Bruaene, Junko Enomoto, Maayke A. Sluman, Jamie L. Jackson, Paul Khairy, Stephen C. Cook, Shanthi Chidambarathanu, Luis Alday, Erwin Oechslin, Katrine Eriksen, Mikael Dellborg, Malin Berghammer, Bengt Johansson, Andrew S. Mackie, Samuel Menahem, Maryanne Caruana, Gruschen Veldtman, Alexandra Soufi, Susan M. Fernandes, Kamila S. White, Edward Callus, Shelby Kutty, Silke Apers, Philip Moons, Luis Alday, Héctor Maisuls, Betina Vega, Samuel Menahem, Sarah Eaton, Qi Feng Wang, Ruth Larion, Werner Budts, Kristien Van Deyk, Silke Apers, Eva Goossens, Jessica Rassart, Koen Luyckx, Philip Moons, Gwen R. Rempel, Andrew S. Mackie, Ross Ballantyne, Kathryn N. Rankin, Colleen M. Norris, Dylan Taylor, Isabelle Vondermuhll, Jonathan Windram, Pamela Heggie, Gerri Lasiuk, Paul Khairy, Anna Bárbara de Freitas Carneiro Proietti, Annie Dore, Lise‐Andrée Mercier, François‐Pierre Mongeon, François Marcotte, Réda Ibrahim, Blandine Mondésert, Marie‐Claude Côté, Adrienne H. Kovacs, Erwin Oechslin, Mimi Bandyopadhyay, Alexandra Soufi, Sylvie Di Filippo, F Sassolas, A Bozio, Cécile Chareyras, Shanthi Chidambarathanu, Farida Farzana, Nitya Lakshmi, Edward Callus, Emilia Quadri, Massimo Chessa, Giovanna Campioni, Alessandro Giamberti, Junko Enomoto, Yoshiko Mizuno, Maryanne Caruana, Victor Grech, Sheena Vella, Anabel Mifsud, Neville Borg, Daniel Chircop, Matthew Mercieca Balbi, Rachel Vella Critien, James Farrugia, Yanika Gatt, Darlene Muscat, Katrine Eriksen, Mette‐Elise Estensen, Mikael Dellborg, Malin Berghammer, Eva Mattsson, Anita Strandberg, Pia Karlström‐Hallberg, Bengt Johansson, Anna‐Karin Kronhamn, Markus Schwerzman, Corina Thomet, Margrit Huber, Jou‐Kou Wang, Chun‐Wei Lu, Hsiao‐Ling Yang, Yu Hua, Barbara J.M. Mulder, Maayke A. Sluman, Marco C. Post, Els Pieper, Kathinka Peels, Marc Waskowsky, Gruschen Veldtman, Michelle Faust, Colin Lozier, Christy Reed, Jamie Hilfer, Curt J. Daniels, Jamie L. Jackson, Shelby Kutty, Carolyn Chamberlain, Sara Warta, Stephen C. Cook, Morgan Hindes, Ari Cedars, Kamila S. White, Susan M. Fernandes, Anitra Romfh, Kirstie MacMillen,

Cardiac pacing and defibrillation studies

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.