Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families

Rui LIANG, Sophelia Hoi Shan CHAN, Frederick Ka Wing HO, Oi Ching TANG, Sharon Wan Wah CHERK, Patrick IP, Esther Yuet Ying LAU

Research output: Contribution to journalArticle

Abstract

This study aims to assess the family functioning and health-related quality of life (HRQOL) in Chinese boys with Duchenne muscular dystrophy (DMD) and their parents using Pediatric Quality-of-Life Family Impact Module (PedsQL FIM) and Pediatric Quality-of-Life Inventory (PedsQL) 4.0. Findings from 15 families with DMD were compared with 15 unaffected families. The HRQOL, as measured by the mean PedsQL 4.0 Generic Core Scale scores for the boys with DMD were significantly lower than those of age-matched healthy boys, for overall (p < 0.05, parent-report; p <0.001, self-report), physical (p < 0.001, parent-report and self-report), and social (p < 0.05, parent-report) functioning, but the emotional functioning is not affected. The parent–child concordance of our affected DMD families was generally in the moderate-to-good agreement range (intraclass correlation coefficients from 0.51 to 0.73), except for emotional (0.28) and social (0.31) functioning. The PedsQL FIM total score showed an inverse relationship with the affected child's age (correlation coefficient: −0.55; p < 0.01) and the disease stage (correlation coefficient: −0.63; p < 0.01) confirming that parental HRQOL and overall family functioning worsened as the child increased in age with advancing disease stage. Copyright © 2019 The Author(s).
Original languageEnglish
Pages (from-to)495-506
JournalJournal of Child Health Care
Volume23
Issue number3
Early online dateJun 2019
DOIs
Publication statusPublished - 01 Sep 2019

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Duchenne Muscular Dystrophy
Quality of Life
Self Report
Pediatrics
Family Health
Parents
Equipment and Supplies

Citation

Liang, R., Chan, S. H. S., Ho, F. K. W., Tang, O. C., Cherk, S. W. W., Ip, P., & Lau, E. Y. Y. (2019). Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families. Journal of Child Health Care, 23(3), 495-506. doi: 10.1177/1367493519857423

Keywords

  • Child
  • Duchenne muscular dystrophy
  • Family impact
  • Proxy report
  • Quality of life
  • Self-report