Quality of Life of Adults with Congenital Heart Disease in 15 Countries Evaluating Country-Specific Characteristics

Silke Apers, Adrienne H. Kovacs, Koen Luyckx, Corina Thomet, Werner Budts, Junko Enomoto, Maayke A. Sluman, Jou Kou Wang, Jamie L. Jackson, Paul Khairy, Stephen C. Cook, Shanthi Chidambarathanu, Luis Alday, Katrine Eriksen, Mikael Dellborg, Malin Berghammer, Eva Mattsson, Andrew S. Mackie, Samuel Menahem, Maryanne CaruanaGruschen Veldtman, Alexandra Soufi, Anitra W. Romfh, Kamila White, Edward Callus, Shelby Kutty, Steffen Fieuws, Philip Moons

Research output: Contribution to journalArticlepeer-review

123 Scopus citations


Background Measuring quality of life (QOL) is fundamental to understanding the impact of disease and treatment on patients' lives. Objectives This study aimed to explore QOL in an international sample of adults with congenital heart disease (CHD), the association between patient characteristics and QOL, and international variation in QOL and its relationship to country-specific characteristics. Methods We enrolled 4,028 adults with CHD from 15 countries. QOL was assessed using a linear analog scale (LAS) (0 to 100) and the Satisfaction with Life Scale (SWLS) (5 to 35). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, and patient-reported New York Heart Association (NYHA) functional class. Country-specific characteristics included general happiness and 6 cultural dimensions. Linear mixed models were applied. Results Median QOL was 80 on the LAS and 27 on the SWLS. Older age, lack of employment, no marriage history, and worse NYHA functional class were associated with lower QOL (p < 0.001). Patients from Australia had the highest QOL (LAS: 82) and patients from Japan the lowest (LAS: 72). Happiness scores and cultural dimensions were not associated with variation in QOL after adjustment for patient characteristics and explained only an additional 0.1% of the variance above and beyond patient characteristics (p = 0.56). Conclusions This large-scale, international study found that overall QOL in adults with CHD was generally good. Variation in QOL was related to patient characteristics but not country-specific characteristics. Hence, patients at risk for poorer QOL can be identified using uniform criteria. General principles for designing interventions to improve QOL can be developed.

Original languageEnglish (US)
Pages (from-to)2237-2245
Number of pages9
JournalJournal of the American College of Cardiology
Issue number19
StatePublished - May 17 2016


  • cross-cultural comparison
  • happiness
  • heart defects
  • international cooperation
  • multilevel analysis

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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