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Quality of life of Malaysian children with CHD

Published online by Cambridge University Press:  06 March 2017

Lai C. Ong*
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Ching S. Teh
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Joyce Darshinee
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Asma Omar
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Hak L. Ang
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
*
Correspondence to: Professor Dr L. C. Ong, Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia. Tel: +60 37 949 2056; Fax: +60 37 949 4704; E-mail: ong.lai.choo@ummc.edu.my

Abstract

Objectives

The objectives of this study were to compare the quality-of-life scores of Malaysian children with CHD and their healthy siblings, to determine the level of agreement between proxy-reports and child self-reports, and to examine variables that have an impact on quality of life in those with CHD.

Methods

Parental-proxy scores of the Pediatric Quality of Life Inventory 4.0 core scales were obtained for 179 children with CHD and 172 siblings. Intra-class coefficients were derived to determine the levels of proxy–child agreement in 66 children aged 8–18 years. Multiple regression analysis was used to determine factors that impacted Pediatric Quality of Life Inventory scores.

Results

Proxy scores were lower in children with CHD than siblings for all scales except physical health. Maximum differences were noted in children aged 5–7 years, whereas there were no significant differences in the 2–4 and 13–18 years age groups. Good levels of proxy–child agreement were found in children aged 8–12 years for total, psychosocial health, social, and school functioning scales (correlation coefficients 0.7–0.8). In children aged 13–18 years, the level of agreement was poor to fair for emotional and social functioning. The need for future surgery and severity of symptoms were associated with lower scores.

Conclusion

Differences in proxy perception of quality of life appear to be age related. The level of proxy–child agreement was higher compared with other reported studies, with lower levels of agreement in teenagers. Facilitating access to surgery and optimising control of symptoms may improve quality of life in this group of children.

Type
Original Articles
Copyright
© Cambridge University Press 2017 

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