PMID- 27173035 OWN - NLM STAT- MEDLINE DCOM- 20170606 LR - 20220330 IS - 1558-3597 (Electronic) IS - 0735-1097 (Linking) VI - 67 IP - 19 DP - 2016 May 17 TI - Quality of Life of Adults With Congenital Heart Disease in 15 Countries: Evaluating Country-Specific Characteristics. PG - 2237-2245 LID - S0735-1097(16)01578-3 [pii] LID - 10.1016/j.jacc.2016.03.477 [doi] 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. CI - Copyright (c) 2016 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved. FAU - Apers, Silke AU - Apers S AD - KU Leuven, University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium. FAU - Kovacs, Adrienne H AU - Kovacs AH AD - Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada. FAU - Luyckx, Koen AU - Luyckx K AD - KU Leuven, University of Leuven, School of Psychology and Child and Adolescent Development, Leuven, Belgium. FAU - Thomet, Corina AU - Thomet C AD - University Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland. FAU - Budts, Werner AU - Budts W AD - KU Leuven, University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium. FAU - Enomoto, Junko AU - Enomoto J AD - Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan. FAU - Sluman, Maayke A AU - Sluman MA AD - Academic Medical Center, Department of Cardiology, Amsterdam, the Netherlands. FAU - Wang, Jou-Kou AU - Wang JK AD - Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan. FAU - Jackson, Jamie L AU - Jackson JL AD - Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio. FAU - Khairy, Paul AU - Khairy P AD - Adult Congenital Heart Center, Montreal Heart Institute, Universite de Montreal, Montreal, Canada. FAU - Cook, Stephen C AU - Cook SC AD - Adult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania. FAU - Chidambarathanu, Shanthi AU - Chidambarathanu S AD - Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India. FAU - Alday, Luis AU - Alday L AD - Division of Cardiology, Hospital de Ninos, Cordoba, Argentina. FAU - Eriksen, Katrine AU - Eriksen K AD - Oslo University Hospital, Rikshospitalet, Oslo, Norway. FAU - Dellborg, Mikael AU - Dellborg M AD - 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/Ostra and Institute for Medicine, The Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden. FAU - Berghammer, Malin AU - Berghammer M AD - The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. FAU - Mattsson, Eva AU - Mattsson E AD - Karolinska University Hospital, Stockholm, Sweden. FAU - Mackie, Andrew S AU - Mackie AS AD - Stollery Children's Hospital, University of Alberta, Edmonton, Canada. FAU - Menahem, Samuel AU - Menahem S AD - Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia. FAU - Caruana, Maryanne AU - Caruana M AD - Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta. FAU - Veldtman, Gruschen AU - Veldtman G AD - Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. FAU - Soufi, Alexandra AU - Soufi A AD - Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France. FAU - Romfh, Anitra W AU - Romfh AW AD - Stanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California. FAU - White, Kamila AU - White K AD - Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri. FAU - Callus, Edward AU - Callus E AD - Department of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan, Italy. FAU - Kutty, Shelby AU - Kutty S AD - University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska. FAU - Fieuws, Steffen AU - Fieuws S AD - KU Leuven, University of Leuven and Universiteit Hasselt, Interuniversity Institute for Biostatistics and Statistical Bioinformatics, Leuven, Belgium. FAU - Moons, Philip AU - Moons P AD - 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. CN - APPROACH-IS consortium and ISACHD LA - eng PT - Journal Article PT - Multicenter Study PL - United States TA - J Am Coll Cardiol JT - Journal of the American College of Cardiology JID - 8301365 SB - IM CIN - J Am Coll Cardiol. 2016 May 17;67(19):2246-2248. PMID: 27173036 CIN - J Thorac Dis. 2016 Oct;8(10 ):E1379-E1380. PMID: 27867634 CIN - J Thorac Dis. 2016 Dec;8(12 ):E1632-E1636. PMID: 28149600 CIN - J Thorac Dis. 2017 Apr;9(4):940-942. PMID: 28523142 MH - Adult MH - Cross-Sectional Studies MH - Female MH - Heart Defects, Congenital/*psychology MH - Humans MH - *Internationality MH - Linear Models MH - Male MH - *Quality of Life MH - Surveys and Questionnaires OTO - NOTNLM OT - cross-cultural comparison OT - happiness OT - heart defects OT - international cooperation OT - multilevel analysis EDAT- 2016/05/14 06:00 MHDA- 2017/06/07 06:00 CRDT- 2016/05/14 06:00 PHST- 2016/01/14 00:00 [received] PHST- 2016/03/02 00:00 [accepted] PHST- 2016/05/14 06:00 [entrez] PHST- 2016/05/14 06:00 [pubmed] PHST- 2017/06/07 06:00 [medline] AID - S0735-1097(16)01578-3 [pii] AID - 10.1016/j.jacc.2016.03.477 [doi] PST - ppublish SO - J Am Coll Cardiol. 2016 May 17;67(19):2237-2245. doi: 10.1016/j.jacc.2016.03.477.