杜兴氏肌肉营养不良症男孩的健康相关生活质量：父母与儿子之间的一致性
Health-related quality of life in boys with Duchenne muscular dystrophy: agreement between parents and their sons.
作者信息
Bray Paula, Bundy Anita C, Ryan Monique M, North Kathryn N, Everett Anna
机构信息
Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, Australia, Institute for Neuroscience and Muscle Research, The Children's Hospital at Westmead, Sydney, Australia.
出版信息
J Child Neurol. 2010 Oct;25(10):1188-94. doi: 10.1177/0883073809357624. Epub 2010 Oct 12.
This study investigated agreement between boys and their parents when reporting on health-related quality of life and the effects of steroid use, age, and physical functioning on self-reported health-related quality of life in boys with Duchenne muscular dystrophy. The Pediatric Quality of Life Inventory™ and brief functional measures were administered to 35 parent-son dyads. We found that agreement between parents and their sons was moderate (intraclass correlation coefficient ICC = 0.66; 95% confidence interval [CI], 0.40-0.80) to poor (ICC(2,1) = 0.64; 95% CI, 0.43-0.64). The boys' self-reports revealed a relationship between disease progression and physical functioning (r = -.75; P = .01); however, disease stage was not related to psychosocial functioning (r = -.27; NS). Parents and boys affected by Duchenne muscular dystrophy have a moderate to poor agreement on health-related quality of life measures, with parents reporting lower overall health-related quality of life when compared with their sons.
本研究调查了患有杜氏肌营养不良症男孩在报告健康相关生活质量时与父母之间的一致性，以及类固醇使用、年龄和身体功能对男孩自我报告的健康相关生活质量的影响。对35对父子进行了儿童生活质量量表™和简短功能测量。我们发现，父母与儿子之间的一致性为中等（组内相关系数ICC=0.66；95%置信区间[CI]，0.40 - 0.80）至较差（ICC(2,1)=0.64；95%CI，0.43 - 0.64）。男孩的自我报告显示疾病进展与身体功能之间存在关联（r = -0.75；P = 0.01）；然而，疾病阶段与心理社会功能无关（r = -0.27；无统计学意义）。患有杜氏肌营养不良症的父母和男孩在健康相关生活质量测量方面的一致性为中等至较差，与儿子相比，父母报告的整体健康相关生活质量较低。
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