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Published on: April 29, 2013
Patient-reported quality of life outcomes for children with serious congenital heart defects
Rachel L Knowles1, Thomas Day, Angie Wade
1MRC Centre of Epidemiology for Child Health, Centre of Paediatric Epidemiology and Biostatistics, UCL Institute of Child Health, University College London, , London, UK.
Insights
Children with serious congenital heart defects (CHDs) report lower quality of life (QoL) than their healthy peers. Clinical interventions, not the diagnosis itself, significantly impact QoL, with sports participation improving well-being.
Area of Science:
- Pediatric Cardiology
- Quality of Life Research
- Child Health Outcomes
Background:
- Serious congenital heart defects (CHDs) significantly impact children's lives.
- Understanding health-related quality of life (QoL) in pediatric populations is crucial for comprehensive care.
- Previous research has not fully elucidated the factors influencing QoL in children with serious CHDs compared to their peers.
Purpose of the Study:
- To compare patient-reported health-related QoL between children with serious CHDs and unaffected classmates.
- To identify demographic and clinical factors associated with QoL in children with serious CHDs.
Main Methods:
- Retrospective cohort study utilizing UK National Health Service data.
- Inclusion of a UK-wide cohort of children (aged 10-14) with serious CHDs requiring early cardiac intervention.
- Comparison group comprised of age- and sex-matched classmates, with data collected via Pediatric Quality of Life Inventory (PedsQL) and parental reports.
Main Results:
- Children with serious CHDs reported significantly lower QoL (median 78.3) than classmates (median 88.0).
- Lower scores were observed in physical and psychosocial functioning for children with CHDs.
- Cardiac interventions, school absence, medications, and comorbidities were linked to reduced QoL, while sports participation showed a positive association.
Conclusions:
- Serious CHDs are associated with a diminished health-related QoL compared to unaffected peers.
- The burden of clinical interventions, rather than the underlying diagnosis, appears to be the primary driver of reduced QoL.
- Promoting sports participation may enhance the emotional well-being of children with serious CHDs, and self-report QoL measures are valuable for clinical audits.
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.
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