Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease (May 2022)

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

DOI
https://doi.org/10.1161/JAHA.121.024993
Journal volume & issue
Vol. 11, no. 9

Abstract

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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.

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