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

被引:15
作者
Liang, Rui [1 ]
Chan, Sophelia Hoi Shan [1 ]
Ho, Frederick Ka Wing [1 ]
Tang, Oi Ching [2 ]
Cherk, Sharon Wan Wah [3 ]
Ip, Patrick [1 ]
Lau, Esther Yuet Ying [4 ,5 ]
机构
[1] Univ Hong Kong, Dept Paediat & Adolescent Med, Hong Kong, Peoples R China
[2] Univ Hong Kong, Dept Psychol, Hong Kong, Peoples R China
[3] Kwong Wah Hosp, Dept Paediat, Hong Kong, Peoples R China
[4] Educ Univ Hong Kong, Dept Psychol, Hong Kong, Peoples R China
[5] Educ Univ Hong Kong, Ctr Psychosocial Hlth, Hong Kong, Peoples R China
关键词
Child; Duchenne muscular dystrophy; family impact; proxy report; quality of life; self-report; PEDIATRIC CHRONIC PAIN; PARENT PROXY-REPORTS; CHILDREN; IMPACT; RELIABILITY; VALIDITY; VERSION; LEVEL;
D O I
10.1177/1367493519857423
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
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.
引用
收藏
页码:495 / 506
页数:12
相关论文
共 29 条
  • [1] Adjusting for multiple testing when reporting research results: The Bonferroni vs Holm methods
    Aickin, M
    Gensler, H
    [J]. AMERICAN JOURNAL OF PUBLIC HEALTH, 1996, 86 (05) : 726 - 728
  • [2] [Anonymous], 2013, PLOS CURR-TREE LIFE, DOI [DOI 10.1371/CURRENTS.MD.9E17658B007EB79FCD6F723089F79E06, 10.1371/currents.md.9e17658b007eb79fcd6f723089f79e06.abstract]
  • [3] Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health
    Bendixen, Roxanna M.
    Senesac, Claudia
    Lott, Donovan J.
    Vandenborne, Krista
    [J]. HEALTH AND QUALITY OF LIFE OUTCOMES, 2012, 10
  • [4] Health status of boys with Duchenne muscular dystrophy: A parent's perspective
    Bray, Paula
    Bundy, Anita C.
    Ryan, Monique M.
    North, Kathryn N.
    Burns, Joshua
    [J]. JOURNAL OF PAEDIATRICS AND CHILD HEALTH, 2011, 47 (08) : 557 - 562
  • [5] Chan Sophelia H S, 2015, Child Neurol Open, V2, p2329048X15585345, DOI 10.1177/2329048X15585345
  • [6] Family function in families of children with Duchenne muscular dystrophy
    Chen, Jih-Yuan
    Clark, Mary-Jo
    [J]. FAMILY & COMMUNITY HEALTH, 2007, 30 (04) : 296 - 304
  • [7] MEDIATORS AFFECTING FAMILY FUNCTION IN FAMILIES OF CHILDREN WITH DUCHENNE MUSCULAR DYSTROPHY
    Chen, Jih-Yuan
    [J]. KAOHSIUNG JOURNAL OF MEDICAL SCIENCES, 2008, 24 (10) : 514 - 521
  • [8] Davis Sarah E, 2010, J Clin Neuromuscul Dis, V11, P97, DOI 10.1097/CND.0b013e3181c5053b
  • [9] Family Impact of Acquired Brain Injury in Children and Youth
    de Kloet, Arend J.
    Lambregts, Suzanne A. M.
    Berger, Monique A. M.
    van Markus, Frederike
    Wolterbeek, Ron
    Vlieland, Thea P. M. Vliet
    [J]. JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, 2015, 36 (05) : 342 - 351
  • [10] De Winter J.C., 2013, PRACT ASSESS RES EVA, V18, P10