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dc.contributor.authorEagleson, Karen J
dc.contributor.authorJusto, Robert N
dc.contributor.authorWare, Robert S
dc.contributor.authorJohnson, Susan G
dc.contributor.authorBoyle, Frances M
dc.description.abstractAim: To determine whether, in children with congenital heart disease (CHD), disease severity is associated with health-related quality of life (HRQOL) and impact on the family. Methods: Cross-sectional, single-centre study comparing HRQOL outcomes of age and sex matched children with hypoplasia of the left ventricle (HLV) (n = 31) and tetralogy of Fallot (n = 29) was performed in Queensland, Australia. HRQOL was assessed using generic and disease-specific components of the Paediatric Quality of Life Inventory Measurement Model (PedsQL). Intra-diagnostic age group comparisons of HRQOL were examined. Impact of CHD on families and parental HRQOL was assessed using the PedsQL Family Impact Scale. Results: Child and parent-proxy reporting indicate children with HLV have significantly lower overall HRQOL than children with tetralogy of Fallot across generic domains of HRQOL (P < 0.0001), with significantly lower scores in physical (P < 0.0001) and psychosocial (P < 0.0001) health domains. No significant difference in child reporting across domains of the Cardiac Module is evident. Parent-proxy reporting indicates significantly lower scores on the symptom scales for children with HLV (P < 0.001), with greater cognitive problems (P < 0.02) and perceived treatment anxiety (P < 0.01). No significant differences in HRQOL were identified between age groups. HLV has a greater overall family impact, with significantly lower parental HRQOL (P = 0.0001) and family functioning (P < 0.0001) summary scores. Conclusions: The more severe condition of HLV is associated with poorer HRQOL in some domains and has greater impact on parental HRQOL and family functioning.
dc.publisherWiley-Blackwell Publishing
dc.relation.ispartofjournalJournal of Paediatrics and Child Health
dc.subject.fieldofresearchPaediatrics and Reproductive Medicine not elsewhere classified
dc.subject.fieldofresearchClinical Sciences
dc.subject.fieldofresearchPaediatrics and Reproductive Medicine
dc.subject.fieldofresearchPublic Health and Health Services
dc.titleHealth-related quality of life and congenital heart disease in Australia
dc.typeJournal article
dc.type.descriptionC1 - Articles
dc.type.codeC - Journal Articles
gro.hasfulltextNo Full Text
gro.griffith.authorWare, Robert

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