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Health-related quality of life and congenital heart disease in Australia

Authors

  • Karen J Eagleson,

    Corresponding author
    1. Queensland Paediatric Cardiac Service, Mater Health Services, Brisbane, Queensland, Australia
    2. School of Population Health, University of Queensland, Brisbane, Queensland, Australia
    • Correspondence: Ms Karen Eagleson, QPCS Specialist Clinics, Mater Health Services, Raymond Terrace, South Brisbane, Qld. 4101, Australia. Fax: +61 73163 7187; email: karen.eagleson@mater.org.au

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  • Robert N Justo,

    1. Queensland Paediatric Cardiac Service, Mater Health Services, Brisbane, Queensland, Australia
    2. School of Paediatric Medicine, University of Queensland, Brisbane, Queensland, Australia
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  • Robert S Ware,

    1. School of Population Health, University of Queensland, Brisbane, Queensland, Australia
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  • Susan G Johnson,

    1. Queensland Paediatric Cardiac Service, Mater Health Services, Brisbane, Queensland, Australia
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  • Frances M Boyle

    1. School of Population Health, University of Queensland, Brisbane, Queensland, Australia
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  • Conflicts of interest: None declared.

Abstract

Aim

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.

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