8 research outputs found
Patient-reported quality of life outcomes for children with serious congenital heart defects
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 healthrelated 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.RLK was awarded an MRC Special Training Fellowship in Health of the Public and Health Services Research (reference G106/1083). TD was supported by an NIHR Academic Clinical Fellowship. This work was supported by a British Heart Foundation project grant (reference PG/02/065/13934). The Centre for Paediatric Epidemiology and Biostatistics benefits from funding support from the Medical Research Council in its capacity as the MRC Centre of Epidemiology for Child Health (reference G04005546). Great Ormond St Hospital for Children NHS Trust and the UCL Institute of Child Health receives a proportion of funding from the Department of Health’s NIHR Biomedical Research Centres schem
Validation of the FEW16 questionnaire for the assessment of physical well-being in patients with heart failure with reduced ejection fraction: results from the CIBIS-ELD study
Tahirović E, Lashki DJ, Trippel TD, et al. Validation of the FEW16 questionnaire for the assessment of physical well-being in patients with heart failure with reduced ejection fraction: results from the CIBIS-ELD study. ESC Heart Failure. 2015;2(3):194-203