TY - JOUR
T1 - Quality of Life of Adults With Congenital Heart Disease in 15 Countries: Evaluating Country-Specific Characteristics
AU - White, Kamila S.
AU - Apers, Silke
AU - Kovacs, Adrienne H.
AU - Luyckx, Koen
AU - Thomet, Corina
AU - Budts, Werner
AU - Enomoto, Junko
AU - Sluman, Maayke A.
AU - Wang, Jou-Kou
AU - Jackson, Jamie L.
AU - Khairy, Paul
AU - Cook, Stephen C.
AU - Chidambarathanu, Shanthi
AU - Alday, Luis
AU - Eriksen, Katrine
AU - Dellborg, Mikael
AU - Berghammer, Malin
AU - Mattsson, Eva
AU - Mackie, Andrew S.
AU - Menahem, Samuel
AU - Caruana, Maryanne
AU - Veldtman, Gruschen
AU - Soufi, Alexandra
AU - Romfh, Anitra W.
AU - Callus, Edward
AU - Kutty, Shelby
AU - Fieuws, Steffen
AU - Moons, Philip
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - cross-cultural comparison
KW - happiness
KW - heart defects
KW - international cooperation
KW - multilevel analysis
UR - https://doi.org/10.1016/j.jacc.2016.03.477
U2 - 10.1016/j.jacc.2016.03.477
DO - 10.1016/j.jacc.2016.03.477
M3 - Article
VL - 67
JO - Journal of the American College of Cardiology
JF - Journal of the American College of Cardiology
ER -