Comparison between children with Juvenile Idiopathic Arthritis (JIA) and their parents concerning perceived quality of life
Comparison between children with Juvenile Idiopathic Arthritis (JIA) and their parents concerning perceived quality of life
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DOI：
10.1007/s11136-005-3690-1
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发表时间：
2006-05-01
影响因子：
3.5
通讯作者：
Duffy, CM
中科院分区：
文献类型：
--
作者：
April, KT;Feldman, DE;Duffy, CM
本研究的目的是确定与JIA的儿童和他们的父母关于生活质量的看法之间的协议水平。50名9-18岁的患者及其父母参加了蒙特利尔儿童医院的JIA诊所，完成了青少年关节炎生活质量问卷（JAQQ）。采用配对t检验比较父母和孩子的得分，并通过组内相关系数（ICC）分析协议。线性回归被用来探索与协议和生活质量的看法相关的因素。JAQQ分量表的ICC（95%置信区间）分别为粗大运动功能0.62（0.42，0.77）、精细运动功能0.35（0.08，0.57）、心理社会功能0.61（0.41，0.76）、全身症状0.70（0.52，0.82）和疼痛0.60（0.38，0.75）。年龄较小的儿童的心理社会功能和患病时间较长的儿童的总体生活质量的一致性较高。疼痛的一致性水平越高，疾病越严重。疾病严重程度与生活质量的感知相关（p < 0.01）。除了精细运动功能外，JIA儿童及其父母对生活质量的看法似乎有很好的一致性。
The aim of the study was to determine the level of agreement between the perceptions of children with JIA and their parents concerning quality of life. Fifty patients aged 9-18 years and their parents, who attended the JIA clinic at the Montreal Children's Hospital, completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Paired t-tests were employed to compare parents' and children's scores and agreements were analyzed by intraclass correlation coefficients (ICCs). Linear regression was used to explore factors associated with agreements and with the perceptions of quality of life. ICCs (95% confidence interval) for the subscales of the JAQQ were 0.62 (0.42,0.77) for gross motor function, 0.35 (0.08,0.57) for fine motor function, 0.61 (0.41,0.76) for psychosocial function, 0.70 (0.52,0.82) for systemic symptoms and 0.60 (0.38,0.75) for pain. Agreement was higher for psychosocial function among younger children and for overall quality of life among those who had the disease longer. Higher agreement levels on pain were associated with more severe disease. Disease severity was associated with perceptions of quality of life (p < 0.01). There seems to be good agreement between the perceptions of children with JIA and their parents concerning quality of life, except for fine motor function.