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

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. MackieSamuel Menahem, Maryanne Caruana, Gruschen Veldtman, Alexandra Soufi, Susan M. Fernandes, Kamila White, Edward Callus, Shelby Kutty, Silke Apers, Philip Moons

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


BACKGROUND: Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with con- genital 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 coher- ence-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, qual- ity 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 ef- fect sizes for physical functioning and illness perception.

Original languageEnglish (US)
Article numbere024993
JournalJournal of the American Heart Association
Issue number9
StatePublished - May 3 2022


  • Adult congenital heart disease
  • heart failure
  • patient-reported outcomes
  • quality of life

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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