Quality of life in children with heart disease as perceived by children and parents.

OBJECTIVES: The aims of this study were to evaluate and compare the parent-reported and self-reported quality of life of children who have cardiovascular disease with the healthy pediatric population across age groups and to determine the relationship between perceived quality of life and severity of cardiovascular disease.

METHODS: The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and Cardiac Module were administered to 475 families including 347 children with cardiovascular disease during a pediatric cardiology outpatient visit. The PedsQL scores reported by children with cardiovascular disease and their parents were compared with pediatric population norms. The relationship between Pediatric Quality of Life Inventory scores and patient characteristics was examined.

RESULTS: By self-report, mean PedsQL scores for children with cardiovascular disease were significantly lower than healthy child norms for physical and psychosocial functioning. Psychosocial quality of life scores were classified as significantly impaired as reported by 21% of children > or = 8 years of age. Even among children with less severe cardiovascular disease, 19.2% reported significantly impaired psychosocial quality of life. By parental report, overall PedsQL scores were not significantly different from healthy children except in the teenage group, and both the 8- to 12-year-old and teenage groups had lower mean psychosocial quality of life scores than healthy peers. Parent-reported mean PedsQL scores for both physical and psychosocial quality of life were significantly lower in children with more severe cardiovascular disease. Children with more severe cardiovascular disease reported lower mean scores for physical functioning, but smaller differences in psychosocial quality of life scores were observed related to disease severity.

CONCLUSIONS: Overall, children with cardiovascular disease perceived lower quality of life than healthy children across all age groups. As perceived by parents, overall quality of life was not significantly different in young children with cardiovascular disease, but children with more severe cardiovascular disease have worse physical and psychosocial quality of life. One in 5 children with cardiovascular disease perceives impaired psychosocial functioning, including children with mild disease severity.