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Please use this identifier to cite or link to this item: http://hdl.handle.net/1942/21596

Title: Quality of Life of Adults With Congenital Heart Disease in 15 Countries: Evaluating Country-Specific Characteristics
Authors: Apers, Silke
Kovacs, Adrienne H.
Luyckx, Koen
Thomet, Corina
Budts, Werner
Enomoto, Junko
Sluman, Maayke A.
Wang, Jou-Kou
Jackson, Jamie L.
Khairy, Paul
Cook, Stephen C.
Chidambarathanu, Shanthi
Alday, Luis
Eriksen, Katrine
Dellborg, Mikael
Berghammer, Malin
Mattsson, Eva
Mackie, Andrew S.
Menahem, Samuel
Caruana, Maryanne
Veldtman, Gruschen
Soufi, Alexandra
Romfh, Anitra W.
White, Kamila
Callus, Edward
Kutty, Shelby
Fieuws, Steffen
Moons, Philip
Issue Date: 2016
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. (C) 2016 by the American College of Cardiology Foundation.
Notes: [Apers, Silke; Moons, Philip] Univ Leuven, KU Leuven, Dept Publ Hlth & Primary Care, Leuven, Belgium. [Kovacs, Adrienne H.] Univ Toronto, Peter Munk Cardiac Ctr, Univ Hlth Network, Toronto, ON, Canada. [Luyckx, Koen] Univ Leuven, KU Leuven, Sch Psychol & Child & Adolescent Dev, Leuven, Belgium. [Thomet, Corina] Univ Hosp Bern, Ctr Congenital Heart Dis, CH-3010 Bern, Switzerland. [Budts, Werner] Univ Leuven, Univ Hosp Leuven, KU Leuven, Div Congenital & Struct Cardiol, Leuven, Belgium. [Enomoto, Junko] Chiba Cardiovasc Ctr, Dept Adult Congenital Heart Dis, Chiba, Japan. [Sluman, Maayke A.] Univ Amsterdam, Acad Med Ctr, Dept Cardiol, NL-1105 AZ Amsterdam, Netherlands. [Wang, Jou-Kou] Natl Taiwan Univ Hosp, Dept Pediat, 1 Chang Te St, Taipei 10016, Taiwan. [Jackson, Jamie L.] Nationwide Childrens Hosp, Ctr Biobehav Hlth, Columbus, OH USA. [Khairy, Paul] Univ Montreal, Adult Congenital Heart Ctr, Montreal Heart Inst, Montreal, PQ, Canada. [Cook, Stephen C.] UPMC, Childrens Hosp Pittsburgh, Adult Congenital Heart Dis Ctr, Inst Heart, Pittsburgh, PA USA. [Chidambarathanu, Shanthi] Frontier Lifeline Hosp, Dr KM Cherian Heart Fdn, Madras, Tamil Nadu, India. [Alday, Luis] Hosp Ninos, Div Cardiol, Cordoba, Argentina. [Eriksen, Katrine] Oslo Univ Hosp, Rikshosp, N-0450 Oslo, Norway. [Dellborg, Mikael; Berghammer, Malin; Moons, Philip] Univ Gothenburg, Inst Med, Sahlgrenska Acad, Gothenburg, Sweden. [Dellborg, Mikael; Berghammer, Malin; Moons, Philip] Univ Gothenburg, Ctr Person Centred Care GPCC, Gothenburg, Sweden. [Dellborg, Mikael] Sahlgrens Univ Hosp, Adult Congenital Heart Unit, Ostra, Sweden. [Dellborg, Mikael] Univ Gothenburg, Sahlgrenska Acad, Inst Med, Gothenburg, Sweden. [Mattsson, Eva] Karolinska Univ Hosp, Stockholm, Sweden. [Mackie, Andrew S.] Univ Alberta, Stollery Childrens Hosp, Edmonton, AB, Canada. [Menahem, Samuel] Monash Univ, Monash Heart, Monash Med Ctr, Melbourne, Vic 3004, Australia. [Caruana, Maryanne] Mater Dei Hosp, Dept Cardiol, Birkirkara Bypass, Malta. [Veldtman, Gruschen] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA. [Soufi, Alexandra] Hosp Civils Lyon, Louis Pradel Hosp, Dept Congenital Heart Dis, Lyon, France. [Romfh, Anitra W.] Stanford Univ, Dept Pediat & Med, Div Pediat Cardiol & Cardiovasc Med, Palo Alto, CA 94304 USA. [White, Kamila] Washington Univ, St Louis, MO USA. [White, Kamila] Univ Missouri, Barnes Jewish Heart & Vasc Ctr, St Louis, MO 63121 USA. [Callus, Edward] IRCCS Policlin San Donato, Dept Pediat Cardiol & Adult Congenital Heart Defe, Milan, Italy. [Kutty, Shelby] Univ Nebraska Med Ctr, Childrens Hosp & Med Ctr, Omaha, NE USA. [Fieuws, Steffen] Univ Leuven, KU Leuven, Leuven, Belgium. [Fieuws, Steffen] Univ Hasselt, Interuniv Inst Biostat & Stat Bioinformat, Leuven, Belgium.
URI: http://hdl.handle.net/1942/21596
DOI: 10.1016/j.jacc.2016.03.477
ISI #: 000375406600007
ISSN: 0735-1097
Category: A1
Type: Journal Contribution
Validation: ecoom, 2017
Appears in Collections: Research publications

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