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Patient-reported quality of life outcomes for children with serious congenital heart defects

Lookup NU author(s): Dr Christopher Wren



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Objective To 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.Design Retrospective cohort study.Setting UK 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 measures Child self-report of health-related QoL scores (Pediatric Quality of Life Inventory, PedsQL) and parental report of schooling and social activities.Results Questionnaires 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.Conclusions Children 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.

Publication metadata

Author(s): Knowles RL, Day T, Wade A, Bull C, Wren C, Dezateux C, on behalf of the UK Collaborative Study of Congenital Heart Defects (UKCSCHD)

Publication type: Article

Publication status: Published

Journal: Archives of Disease in Childhood

Year: 2014

Volume: 99

Issue: 5

Pages: 413-419

Print publication date: 01/05/2014

Online publication date: 09/01/2014

Acceptance date: 13/12/2013

Date deposited: 16/10/2014

ISSN (print): 0003-9888

ISSN (electronic): 1468-2044

Publisher: BMJ Publishing Group


DOI: 10.1136/archdischild-2013-305130


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Funder referenceFunder name
Department of Health's NIHR Biomedical Research Centres scheme
NIHR Academic Clinical Fellowship
G04005546Medical Research Council in its capacity as the MRC Centre of Epidemiology for Child Health
G106/1083MRC Special Training Fellowship in Health of the Public and Health Services Research
PG/02/065/13934British Heart Foundation project grant