Heart Failure and Patient‐Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
Authors: Lu Chun‐Wei , Wang Jou‐Kou , Yang Hsiao‐Ling , 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 , Alday Luis , Maisuls Héctor , Vega Betina , Menahem Samuel , Eaton Sarah , Wang Qi Feng , Larion Ruth , Budts Werner , Van Deyk Kristien , Apers Silke , Goossens Eva , Rassart Jessica , Luyckx Koen , Moons Philip , Rempel Gwen , Mackie Andrew , Ballantyne Ross , Rankin Kathryn , Norris Colleen , Taylor Dylan , Vondermuhll Isabelle , Windram Jonathan , Heggie Pamela , Lasiuk Gerri , Khairy Paul , Proietti Anna , Dore Annie , Mercier Lise‐Andrée , Mongeon François‐Pierre , Marcotte François , Ibrahim Reda , Mondésert Blandine , Côté Marie‐Claude , Kovacs Adrienne , Oechslin Erwin , Bandyopadhyay Mimi , Soufi Alexandra , Di Filippo Sylvie , Sassolas François , Bozio André , Chareyras Cécile , Chidambarathanu Shanthi , Farzana Farida , Lakshmi Nitya , Callus Edward , Quadri Emilia , Chessa Massimo , Campioni Giovanna , Giamberti Alessandro , Enomoto Junko , Mizuno Yoshiko , Caruana Maryanne , Grech Victor , Vella Sheena , Mifsud Anabel , Borg Neville , Chircop Daniel , Balbi Matthew Mercieca , Critien Rachel Vella , Farrugia James , Gatt Yanika , Muscat Darlene , Eriksen Katrine , Estensen Mette‐Elise , Dellborg Mikael , Berghammer Malin , Mattsson Eva , Strandberg Anita , Karlström‐Hallberg Pia , Johansson Bengt , Kronhamn Anna‐Karin , Schwerzman Markus , Thomet Corina , Huber Margrit , Wang Jou‐Kou , Lu Chun‐Wei , Yang Hsiao‐Ling , Hua Yu Chuan , Mulder Barbara , Sluman Maayke , Post Marco , Pieper Els , Peels Kathinka , Waskowsky Marc , Veldtman Gruschen , Faust Michelle , Lozier Colin , Reed Christy , Hilfer Jamie , Daniels Curt , Jackson Jamie , Kutty Shelby , Chamberlain Carolyn , Warta Sara , Cook Stephen , Hindes Morgan , Cedars Ari , White Kamila , Fernandes Susan , Romfh Anitra , MacMillen Kirstie 
Published: April 2022

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.