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

TitleHealth-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families
Authors
KeywordsChild
Duchenne muscular dystrophy
family impact
proxy report
quality of life
Issue Date2019
PublisherSage Publications Ltd. The Journal's web site is located at http://www.sagepub.co.uk/journal.aspx?pid=105621
Citation
Journal of Child Health Care: for professionals working with children in the hospital and community, 2019, v. 23 n. 3, p. 495-506 How to Cite?
AbstractThis 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.
Persistent Identifierhttp://hdl.handle.net/10722/275743
ISSN
2017 Impact Factor: 1.107
2015 SCImago Journal Rankings: 0.519

 

DC FieldValueLanguage
dc.contributor.authorLIANG, R-
dc.contributor.authorChan, SHS-
dc.contributor.authorHo, FKW-
dc.contributor.authorTang, OC-
dc.contributor.authorCherk, SWW-
dc.contributor.authorIp, P-
dc.contributor.authorLau, EYY-
dc.date.accessioned2019-09-10T02:48:47Z-
dc.date.available2019-09-10T02:48:47Z-
dc.date.issued2019-
dc.identifier.citationJournal of Child Health Care: for professionals working with children in the hospital and community, 2019, v. 23 n. 3, p. 495-506-
dc.identifier.issn1367-4935-
dc.identifier.urihttp://hdl.handle.net/10722/275743-
dc.description.abstractThis 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.-
dc.languageeng-
dc.publisherSage Publications Ltd. The Journal's web site is located at http://www.sagepub.co.uk/journal.aspx?pid=105621-
dc.relation.ispartofJournal of Child Health Care: for professionals working with children in the hospital and community-
dc.rightsJournal of Child Health Care: for professionals working with children in the hospital and community. Copyright © Sage Publications Ltd.-
dc.subjectChild-
dc.subjectDuchenne muscular dystrophy-
dc.subjectfamily impact-
dc.subjectproxy report-
dc.subjectquality of life-
dc.titleHealth-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families-
dc.typeArticle-
dc.identifier.emailChan, SHS: sophehs@hku.hk-
dc.identifier.emailHo, FKW: fredkho@connect.hku.hk-
dc.identifier.emailIp, P: patricip@hku.hk-
dc.identifier.authorityChan, SHS=rp02210-
dc.identifier.authorityIp, P=rp01337-
dc.description.naturelink_to_subscribed_fulltext-
dc.identifier.doi10.1177/1367493519857423-
dc.identifier.pmid31220930-
dc.identifier.scopuseid_2-s2.0-85068094287-
dc.identifier.hkuros305211-
dc.identifier.volume23-
dc.identifier.issue3-
dc.identifier.spage495-
dc.identifier.epage506-
dc.publisher.placeUnited Kingdom-

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