ArticleArchives of disease in childhood2014
Patient-reported quality of life outcomes for children with serious congenital heart defects.
Article in Archives of disease in childhood, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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.
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Who cites it
27 citing papers in PubMed, 1 synthesis or guideline pooled it, 78 citations in OpenAlex.
- Long-Term Survival of Individuals Born With Congenital Heart Disease: A Systematic Review and Meta-Analysis.Journal of the American Heart Association · 2016Pooled it
- Preliminary experience using milnacipran in patients with juvenile fibromyalgia: lessons from a clinical trial program.Pediatric rheumatology online journal · 2015Trial
- Beyond Survival: Child and Parent Well-Being in Pediatric Heart Failure.Pediatric cardiology · 2026Article
- Comparative performance of common paediatric patient-reported outcome measures (P-PROMs) across health conditions.Archives of disease in childhood · 2026Article
- Health-related quality of life and its determinants among children with congenital heart defects in Lagos, Nigeria: a comparative cross-sectional study.BMC cardiovascular disorders · 2026Article
- Article
- Exploring parental perspectives of physiotherapy in children with congenital heart disease: a qualitative study.BMJ paediatrics open · 2025Article
- Health-Related Quality of Life in Children 4-5 Years After Open Heart Surgery in Early Infancy.CJC pediatric and congenital heart disease · 2025Article
- The quality of life of children with heart disease in Tanzania: a single center study.BMC pediatrics · 2025Article
- Health-related quality of life at 5 years of age for children born very preterm with congenital anomalies: a multi-national cohort study.Pediatric research · 2025Article
- Assessment of mental health and quality of life among children with congenital heart disease.Journal of pediatric rehabilitation medicine · 2024Article
- Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study.European journal of pediatrics · 2024Article
- Quality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approach.Global heart · 2024Article
- Effects of Sports, Exercise Training, and Physical Activity in Children with Congenital Heart Disease-A Review of the Published Evidence.Children (Basel, Switzerland) · 2023Review
- The discovery of a data-driven causal diagram of sport participation in children and adolescents with heart disease: a pilot study.Frontiers in cardiovascular medicine · 2023Article
- Access to cardiac surgery centers for cardiac and non-cardiac hospitalizations in adolescents and adults with congenital heart defects- a descriptive case series study.American heart journal · 2021Article
- Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries.Cardiology in the young · 2020Article
- Parents of Very Young Children with Congenital Heart Defects Report Good Quality of Life for Their Children and Families Regardless of Defect Severity.Pediatric cardiology · 2020Article
- Value and Diagnostic Efficacy of Fetal Morphology Assessment Using Ultrasound in A Poor-Resource Setting.Diagnostics (Basel, Switzerland) · 2019Article
- Impact of Family Socioeconomic Status on Health-Related Quality of Life in Children With Critical Congenital Heart Disease.Journal of the American Heart Association · 2019Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 4 institutions in 2 countries.
Funding
Abstract
objectiveTo compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates and to investigate the demographic and clinical factors influencing QoL.
designRetrospective cohort study.
settingUK National Health Service. PATIENTS: UK-wide cohort of children with serious CHDs aged 10-14 years requiring cardiac intervention in the first year of life in one of 17 UK paediatric cardiac surgical centres operating during 1992-1995. A comparison group of classmates of similar age and sex was recruited.
main outcome measuresChild self-report of health-related QoL scores (Pediatric Quality of Life Inventory, PedsQL) and parental report of schooling and social activities.
resultsQuestionnaires were completed by 477 children with CHDs (56% boys; mean age 12.1 (SD 1.0) years) and 464 classmates (55%; 12.0 (SD 1.1) years). Children with CHDs rated QoL significantly lower than classmates (CHDs: median 78.3 (IQR 65.0-88.6); classmates: 88.0 (80.2-94.6)) and scored lower on physical (CHDs: 84.4; classmates: 93.8; difference 9.4 (7.8 to 10.9)) and psychosocial functioning subscales (CHDs: 76.7, classmates: 85.0; difference 8.3 (6.0 to 10.6)). Cardiac interventions, school absence, regular medications and non-cardiac comorbidities were independently associated with reduced QoL. Participation in sport positively influenced QoL and was associated with higher psychosocial functioning scores.
conclusionsChildren with serious CHDs experience lower QoL than unaffected classmates. This appears related to the burden of clinical intervention rather than underlying cardiac diagnosis. Participation in sports activities is positively associated with increased emotional well-being. Child self-report measures of QoL would be a valuable addition to clinical outcome audit in this age group.
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Registered trials
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.