Evidence map›Paper›PMID 27173035›Full record

ArticleJournal of the American College of Cardiology2016

Quality of Life of Adults With Congenital Heart Disease in 15 Countries: Evaluating Country-Specific Characteristics.

Silke Apers, Adrienne H Kovacs, Koen Luyckx, Corina Thomet, Werner Budts, Junko Enomoto, Maayke A Sluman, Jou-Kou Wang, Jamie L Jackson, Paul Khairy and 19 more

Abstract readMulticenter Study
PubMed Publisher
In one paragraph

Article in Journal of the American College of Cardiology, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 62 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
62citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

62 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Review
  5. Assessing Quality of Life in Genetic Cardiomyopathies: A Scoping Review.International journal of environmental research and public health · 2026
    Article
  6. Article
  7. Article
  8. Article
  9. Efficacy of Magnetic Resonance Elastography in Fontan-Associated Liver Disease.JGH open : an open access journal of gastroenterology and hepatology · 2025
    Article
  10. Fatigue in adults with congenital heart disease aged over 40 years.International journal of cardiology. Congenital heart disease · 2025
    Article
  11. Article
  12. Review
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article

2 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

29 authors.

Silke ApersKU Leuven, University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium.
Adrienne H KovacsPeter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada.
Koen LuyckxKU Leuven, University of Leuven, School of Psychology and Child and Adolescent Development, Leuven, Belgium.
Corina ThometUniversity Hospital Bern, Center for Congenital Heart Disease, Bern, Switzerland.
Werner BudtsKU Leuven, University of Leuven, University Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium.
Junko EnomotoDepartment of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
Maayke A SlumanAcademic Medical Center, Department of Cardiology, Amsterdam, the Netherlands.
Jou-Kou WangDepartment of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan.
Jamie L JacksonCenter for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio.
Paul KhairyAdult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada.
Stephen C CookAdult Congenital Heart Disease Center, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania.
Shanthi ChidambarathanuFrontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India.
Luis AldayDivision of Cardiology, Hospital de Niños, Córdoba, Argentina.
Katrine EriksenOslo University Hospital, Rikshospitalet, Oslo, Norway.
Mikael DellborgThe 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.
Malin BerghammerThe Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
Eva MattssonKarolinska University Hospital, Stockholm, Sweden.
Andrew S MackieStollery Children's Hospital, University of Alberta, Edmonton, Canada.
Samuel MenahemMonash Heart, Monash Medical Centre, Monash University, Melbourne, Australia.
Maryanne CaruanaDepartment of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta.
Gruschen VeldtmanCincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Alexandra SoufiDepartment of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
Anitra W RomfhStanford University, Department of Pediatrics and Medicine, Division of Pediatric Cardiology and Cardiovascular Medicine, Palo Alto, California.
Kamila WhiteWashington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri.
Edward CallusDepartment of Pediatric Cardiology and Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Milan, Italy.
Shelby KuttyUniversity of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska.
Steffen FieuwsKU Leuven, University of Leuven and Universiteit Hasselt, Interuniversity Institute for Biostatistics and Statistical Bioinformatics, Leuven, Belgium.
Philip MoonsKU 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.
APPROACH-IS consortium and ISACHD

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMeasuring quality of life (QOL) is fundamental to understanding the impact of disease and treatment on patients' lives.

objectivesThis 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.

methodsWe 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.

resultsMedian 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).

conclusionsThis 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.

Indexed as

InternationalityQuality of LifeAdultCross-Sectional StudiesFemaleHeart Defects, CongenitalHumansLinear ModelsMaleSurveys and Questionnairescross-cultural comparisonhappinessheart defectsinternational cooperationmultilevel analysis

Identifiers

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.