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

Kamila S. White, 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 MenahemMaryanne Caruana, Gruschen Veldtman, Alexandra Soufi, Anitra W. Romfh, Edward Callus, Shelby Kutty, Steffen Fieuws, Philip Moons

Research output: Contribution to journalArticlepeer-review

Abstract

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 languageAmerican English
JournalJournal of the American College of Cardiology
Volume67
DOIs
StatePublished - 2016

Keywords

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

Disciplines

  • Psychology

Cite this