Silke Apers1, Adrienne H Kovacs2, Koen Luyckx3, Corina Thomet4, Werner Budts5, Junko Enomoto6, Maayke A Sluman7, Jou-Kou Wang8, Jamie L Jackson9, Paul Khairy10, Stephen C Cook11, Shanthi Chidambarathanu12, Luis Alday13, Katrine Eriksen14, Mikael Dellborg15, Malin Berghammer16, Eva Mattsson17, Andrew S Mackie18, Samuel Menahem19, Maryanne Caruana20, Gruschen Veldtman21, Alexandra Soufi22, Anitra W Romfh23, Kamila White24, Edward Callus25, Shelby Kutty26, Steffen Fieuws27, Philip Moons28. 1. KU Leuven, University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium. 2. Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada. 3. KU Leuven, University of Leuven, School of Psychology and Child and Adolescent Development, Leuven, Belgium. 4. University Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland. 5. KU Leuven, University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium. 6. Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan. 7. Academic Medical Center, Department of Cardiology, Amsterdam, the Netherlands. 8. Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan. 9. Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio. 10. Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada. 11. Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania. 12. Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India. 13. Division of Cardiology, Hospital de Niños, Córdoba, Argentina. 14. Oslo University Hospital, Rikshospitalet, Oslo, Norway. 15. The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden. 16. The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. 17. Karolinska University Hospital, Stockholm, Sweden. 18. Stollery Children's Hospital, University of Alberta, Edmonton, Canada. 19. Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia. 20. Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta. 21. Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. 22. Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France. 23. Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California. 24. Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri. 25. Department of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan, Italy. 26. University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska. 27. KU Leuven, University of Leuven and Universiteit Hasselt, Interuniversity Institute for Biostatistics and Statistical Bioinformatics, Leuven, Belgium. 28. KU Leuven, University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium; The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Electronic address: philip.moons@kuleuven.be.
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.
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.
Authors: Caroline Andonian; Jürgen Beckmann; Sabina Biber; Peter Ewert; Sebastian Freilinger; Harald Kaemmerer; Renate Oberhoffer; Lars Pieper; Rhoia Clara Neidenbach Journal: Cardiovasc Diagn Ther Date: 2018-12
Authors: Christina E Holbein; Nicholas D Fogleman; Kevin Hommel; Silke Apers; Jessica Rassart; Philip Moons; Koen Luyckx; Maayke A Sluman; Junko Enomoto; Bengt Johansson; Hsiao-Ling Yang; Mikael Dellborg; Raghavan Subramanyan; Jamie L Jackson; Werner Budts; Adrienne H Kovacs; Stacey Morrison; Martha Tomlin; Kathy Gosney; Alexandra Soufi; Katrine Eriksen; Corina Thomet; Malin Berghammer; Luis Alday; Edward Callus; Susan M Fernandes; Maryanne Caruana; Samuel Menahem; Stephen C Cook; Gwen R Rempel; Kamila White; Paul Khairy; Shelby Kutty; Gruschen Veldtman Journal: Congenit Heart Dis Date: 2018-01-03 Impact factor: 2.007