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HK J Paediatr (New Series)
Vol 26. No. 1,
2021
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HK J Paediatr (New Series) 2021;26:14-20
Original Article
The Impact of Paediatric Neuromuscular Disorders on Parents' Health-Related Quality of Life and Family Functioning
MHT Ho, R Liang, YT Ip, H Zhi, WHS Wong, SHS Chan Department of Paediatrics and Adolescent Medicine, Li Ka Shing Faculty of Medicine, The University of Hong Kong, 102 Pokfulam Road, Pokfulam, Hong Kong SAR, China MHT Ho(何曉婷) MBBS (HK) R Liang(梁睿) BSc, MPhil(HK) WHS Wong(黃慶生) PhD SHS Chan(陳凱珊) MMedSc(HK), FHKAM(Paed), FHKCPaed Department of Clinical Psychology, The Duchess of Kent Children's Hospital at Sandy Bay, 12 Sandy Bay Road, Pokfulam, Hong Kong SAR, China YT Ip(葉以霆) MSocSc(Clin.Psy.), MPhil(HK), RCP(HKPS) Biostatistics and Clinical Research Methodology Unit, Li Ka Shing Faculty of Medicine, The University of Hong Kong, 102 Pokfulam Road, Pokfulam, Hong Kong SAR, China H Zhi(智慧) BA (Economics), BS (Probability and Statistics), PhD Correspondence to: Dr SHS Chan Email: sophehs@hku.hk Received May 14, 2019
Abstract Aims: This study aimed to evaluate the impact of hereditary neuromuscular disorders on parent's health-related quality of life and family functioning, and to study the correlation of parental stress on family impact. Methods: This retrospective cross-sectional study analysed responses from 80 parents of 80 children with different neuromuscular disorders on two self-reported questionnaires: the Chinese version of PedsQLFamily Impact Module and the Parental Stress Scale. Results: We found the Parental Stress Score exhibited a moderate negative correlation with the PedsQLFamily Impact Module total score (Pearson correlation coefficient: -0.55). Among different neuromuscular disorders, spinal muscular atrophy had the worst negative family impact. Additionally, a non-walking status had moderate negative effects on family impact (T-test effect size: 0.71). Conclusion: Neuromuscular disorders cause a significant negative family impact. Evaluation of parental stress, parental health-related quality of life and family functioning should be part of the standard of care for affected families. Keyword : Neuromuscular disorders; Quality of life research
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