Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study.
Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study.
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DOI：
10.1186/1546-0096-10-33
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发表时间：
2012-09-17
期刊：
影响因子：
--
通讯作者：
Eurenius E
中科院分区：
文献类型：
--
作者：
Lundberg V;Lindh V;Eriksson C;Petersen S;Eurenius E
幼年特发性关节炎 (JIA) 影响儿童和青少年，导致短期和长期残疾。与健康同龄人相比，这些儿童的健康相关生活质量 (HRQOL) 也较低。然而，自我报告和家长报告之间似乎存在一些差异，性别差异需要进一步研究。本研究旨在描述患有幼年特发性关节炎的女孩和男孩的 HRQOL，并探讨幼年特发性关节炎儿童自我报告与家长报告中 HRQOL 的性别差异。 53 名中位年龄为 14 岁（8-18 岁）的幼年特发性关节炎儿童和青少年（70% 为女孩，30% 为男孩）及其父母参加了在瑞典进行的这项横断面研究。数据是在儿科门诊普通就诊之前 16 个月（2009 年至 2010 年）期间系统收集的。通过儿童健康评估问卷 (CHAQ) 评估残疾情况，通过医生评估和红细胞沉降率 (ESR) 评估疾病活动度。儿科生活质量量表 4.0 通用核心量表 (PedsQL) 用于评估儿童的 HRQOL 自我报告和家长报告。在这个疾病活动度普遍较低、轻度至中度残疾的儿童样本中，超过一半的儿童的 HRQOL 较差，女孩和男孩的情况相同。儿童 HRQOL 的自我报告和家长报告之间的显着差异在女孩中最为明显，家长对女孩的身体和心理社会健康以及 HRQOL 总分的报告较低。除了社会功能分量表（父母的报告高于儿子）外，男孩和父母的报告之间没有显着差异。在该样本中，超过一半的女孩和男孩的 HRQOL 不理想，没有性别差异。然而，儿童 HRQOL 的自我报告和家长报告之间存在差异，其中女孩之间的差异最为显着。因此，在临床环境中必须考虑儿童 HRQOL 的自我报告和家长报告之间的差异，尤其是患有 JIA 的女孩。
Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA. Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child. In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports. More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.
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