Patient-reported quality of life outcomes for children with serious congenital heart defects. Issue 5 (9th January 2014)

• Record Type: Journal Article
• Authors: Knowles, Rachel L; Day, Thomas; Wade, Angie; Bull, Catherine; Wren, Christopher; Dezateux, Carol
• Other Names: Adwani Satish author non-byline.; Bu'Lock Frances author non-byline.; Craig Brian author non-byline.; Daubeney Piers author non-byline.; Derrick Graham author non-byline.; Elliott Martin author non-byline.; Franklin Rodney author non-byline.; Gibbs John author non-byline.; Knight Brodie author non-byline.; Lim Joyce author non-byline.; Magee Alan author non-byline.; Martin Rob author non-byline.; Miller Paul author non-byline.; Qureshi Shakeel author non-byline.; Rosenthal Eric author non-byline.; Salmon Anthony author non-byline.; Sullivan Ian author non-byline.; Thakker Pradip author non-byline.; Thomson John author non-byline.; Wilson Dirk author non-byline.; Wong Amos author non-byline.
• Is Part Of: Archives of disease in childhood. Volume 99:Issue 5(2014)
• Page Start: 413
• Page End: 419
• Publication Date: 2014-01-09
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2013-305130
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : 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.