title: Quality of Life of Adults With Congenital Heart Disease in 15 Countries: Evaluating Country-Specific Characteristics.
abstract: BACKGROUND
  Measuring quality of life (QOL) is fundamental to understanding the impact of disease and treatment on patients' lives.
  
  
  OBJECTIVE
  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.affiliation: KU Leuven, University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium.
authors.forename: Silke
authors.initials: S
authors.lastname: Apers
authors.affiliation: Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada.
authors.forename: Adrienne H
authors.initials: AH
authors.lastname: Kovacs
authors.affiliation: KU Leuven, University of Leuven, School of Psychology and Child and Adolescent Development, Leuven, Belgium.
authors.forename: Koen
authors.initials: K
authors.lastname: Luyckx
authors.affiliation: University Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland.
authors.forename: Corina
authors.initials: C
authors.lastname: Thomet
authors.affiliation: KU Leuven, University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium.
authors.forename: Werner
authors.initials: W
authors.lastname: Budts
authors.affiliation: Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
authors.forename: Junko
authors.initials: J
authors.lastname: Enomoto
authors.affiliation: Academic Medical Center, Department of Cardiology, Amsterdam, the Netherlands.
authors.forename: Maayke A
authors.initials: MA
authors.lastname: Sluman
authors.affiliation: Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.
authors.forename: Jou-Kou
authors.initials: JK
authors.lastname: Wang
authors.affiliation: Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio.
authors.forename: Jamie L
authors.initials: JL
authors.lastname: Jackson
authors.affiliation: Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada.
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.affiliation: Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania.
authors.forename: Stephen C
authors.initials: SC
authors.lastname: Cook
authors.affiliation: Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.
authors.forename: Shanthi
authors.initials: S
authors.lastname: Chidambarathanu
authors.affiliation: Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
authors.forename: Luis
authors.initials: L
authors.lastname: Alday
authors.affiliation: Oslo University Hospital, Rikshospitalet, Oslo, Norway.
authors.forename: Katrine
authors.initials: K
authors.lastname: Eriksen
authors.affiliation: 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.
authors.forename: Mikael
authors.initials: M
authors.lastname: Dellborg
authors.affiliation: The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
authors.forename: Malin
authors.initials: M
authors.lastname: Berghammer
authors.affiliation: Karolinska University Hospital, Stockholm, Sweden.
authors.forename: Eva
authors.initials: E
authors.lastname: Mattsson
authors.affiliation: Stollery Children's Hospital, University of Alberta, Edmonton, Canada.
authors.forename: Andrew S
authors.initials: AS
authors.lastname: Mackie
authors.affiliation: Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.
authors.forename: Samuel
authors.initials: S
authors.lastname: Menahem
authors.affiliation: Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
authors.forename: Maryanne
authors.initials: M
authors.lastname: Caruana
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Gruschen
authors.initials: G
authors.lastname: Veldtman
authors.affiliation: Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Soufi
authors.affiliation: Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California.
authors.forename: Anitra W
authors.initials: AW
authors.lastname: Romfh
authors.affiliation: Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri.
authors.forename: Kamila
authors.initials: K
authors.lastname: White
authors.affiliation: Department of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan, Italy.
authors.forename: Edward
authors.initials: E
authors.lastname: Callus
authors.affiliation: University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska.
authors.forename: Shelby
authors.initials: S
authors.lastname: Kutty
authors.affiliation: KU Leuven, University of Leuven and Universiteit Hasselt, Interuniversity Institute for Biostatistics and Statistical Bioinformatics, Leuven, Belgium.
authors.forename: Steffen
authors.initials: S
authors.lastname: Fieuws
authors.affiliation: 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.
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D038622:Internationality; D016014:Linear Models; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: cross-cultural comparison; happiness; heart defects; international cooperation; multilevel analysis