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

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.PatientsUK-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.

Delayed puberty and abnormal anthropometry and its associations with quality of life in young Fontan survivors: A multicenter cross-sectional study

“…It is not surprising that Fontan survivors in this study have significantly lower QoL compared to their peers . Multiple prior reports have shown reduced QoL in patients with significant congenital heart diseases including patients with single ventricle physiology and Fontan . Our study finding of worse parent's perceptions of QoL status of their children compared to the children's perceptions after the Fontan procedure has been reported before .…”

“…It is not surprising that Fontan survivors in this study have significantly lower QoL compared to their peers . Multiple prior reports have shown reduced QoL in patients with significant congenital heart diseases including patients with single ventricle physiology and Fontan .…”

“…5,13,[22][23][24] Multiple prior reports have shown reduced QoL in patients with significant congenital heart diseases including patients with single ventricle physiology and Fontan. 23 Our study finding of worse parent's perceptions of QoL status of their children compared to the children's perceptions after the Fontan procedure has been reported before. 24 Lower family income was associated with lower health-related QoL in Fontan survivors.…”

Long‐Term Survival of Individuals Born With Congenital Heart Disease: A Systematic Review and Meta‐Analysis

“…Although this review provides insight into long‐term mortality associated with CHD, we did not account for morbidity. Research suggests that quality of life is lower in those with CHD and that those who live with CHD can have morbidities such as endocarditis, cerebrovascular accidents, myocardial infarctions, and arrhythmias . The American Heart Association has also reported that children with CHD are at increased risk of developmental disorders .…”

Reduced physical exercise and health‐related quality of life after Fontan palliation

“…Other factors, unrelated to cardiac status, may also affect physical activity in these patients . The quality of life for children with severe cardiovascular disease has been shown to be lower than that of healthy children . In Fontan patients, factors such as the type of pumping ventricle, number of surgical procedures and complications, age at completed Fontan circulation and arrhythmia have also been reported to influence health‐related quality of life .…”