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影响摩洛哥青少年特发性关节炎患者生活质量的因素。

Factors influencing the quality of life of Moroccan patients with juvenile idiopathic arthritis.

作者信息

Ezzahri M, Amine B, Rostom S, Badri D, Mawani N, Gueddari S, Shyen S, Wabi M, Moussa F, Abouqal R, Chkirate B, Hajjaj-Hassouni N

机构信息

Service de Rhumatologie, Hôpital El Ayachi, CHU Rabat-Salé, Rabat, Morocco,

出版信息

Clin Rheumatol. 2014 Nov;33(11):1621-6. doi: 10.1007/s10067-014-2489-2. Epub 2014 Jan 21.

DOI:10.1007/s10067-014-2489-2
PMID:24445385
Abstract

The aim of our study is to investigate the factors influencing the quality of life, assessed by the Pediatric Quality of Life Inventory 4.0 (PedsQL4) Generic Score Scales, in Moroccan patients with juvenile idiopathic arthritis. This is a cross-sectional study conducted between January and June 2012, covering children with juvenile idiopathic arthritis (JIA) seen at the consultations of El Ayachi Hospital and Children's Hospital of the University Hospital of Rabat. Quality of life is assessed by the PedsQL4 which is a questionnaire composed of 23 items, completed by the child and the parent; the response to each item ranges from 0 to 100, so that higher scores indicate a better quality of life. The functional impact is assessed by the Childhood Health Assessment Questionnaire (CHAQ), and the disease activity by the number of tender and swollen joints, visual analogue scale (VAS) activity, erythrocyte sedimentation rate (ESR), and C-reactive protein. Forty-seven patients are included; the average age of the patients is 11 ± 3.35 years, and 40.4 % are females, with a median disease duration of 4 (2; 6) years. The oligoarticular form presents 26.7 %, the systemic form 24.4 %, and the enthesic form 22.2 %. The median of PedsQL4 is 80.43 (63.19; 92.93), and the median of the CHAQ is 0 (0; 1). Our study shows that some clinical and biological characteristics have significant effects on PedsQL by both parent and child reports. This study suggests that the achievement of the quality of life of our patients with JIA depends on the disease activity measured by swollen joints, the number of awakenings, parent VAS, physician VAS, patient VAS, and the ESR.

摘要

我们研究的目的是调查影响摩洛哥青少年特发性关节炎患者生活质量的因素,该生活质量通过儿童生活质量量表4.0(PedsQL4)通用评分量表进行评估。这是一项于2012年1月至6月开展的横断面研究,涵盖了在拉巴特大学医院艾尔阿亚奇医院和儿童医院门诊就诊的青少年特发性关节炎(JIA)患儿。生活质量通过PedsQL4进行评估,这是一份由23个项目组成的问卷,由患儿及其家长填写;每个项目的回答范围为0至100,分数越高表明生活质量越好。功能影响通过儿童健康评估问卷(CHAQ)进行评估,疾病活动度通过压痛和肿胀关节数量、视觉模拟量表(VAS)活动度、红细胞沉降率(ESR)和C反应蛋白进行评估。纳入了47例患者;患者的平均年龄为11±3.35岁,40.4%为女性,疾病持续时间中位数为4(2;6)年。少关节型占26.7%,全身型占24.4%,附着点炎型占22.2%。PedsQL4的中位数为80.43(63.19;92.93),CHAQ的中位数为0(0;1)。我们的研究表明,一些临床和生物学特征对家长和患儿报告的PedsQL均有显著影响。本研究表明,我们JIA患者生活质量的实现取决于通过肿胀关节数量、觉醒次数、家长VAS、医生VAS、患者VAS和ESR所测量的疾病活动度。

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本文引用的文献

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Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study.青少年特发性关节炎患儿的健康相关生活质量:横断面研究中的自我报告和父母报告。
Pediatr Rheumatol Online J. 2012 Sep 17;10(1):33. doi: 10.1186/1546-0096-10-33.
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The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis.经济困难、照顾者心理困扰、疾病活动与儿童青少年特发性关节炎患者健康相关生活质量的相关性。
Qual Life Res. 2012 Sep;21(7):1185-91. doi: 10.1007/s11136-011-0033-2. Epub 2011 Oct 11.
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下肢受累类型对青少年特发性关节炎外周型为主的形式中运动表现、功能和生活质量的重要性。
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Burden of childhood-onset arthritis.
儿童期起病关节炎的负担。
Pediatr Rheumatol Online J. 2010 Jul 8;8:20. doi: 10.1186/1546-0096-8-20.
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Psychometric properties evaluation of the childhood health assessment questionnaire (CHAQ) in Moroccan juvenile idiopathic arthritis.儿童健康评估问卷(CHAQ)在摩洛哥青少年特发性关节炎中的心理测量学特性评价。
Rheumatol Int. 2010 May;30(7):879-85. doi: 10.1007/s00296-009-1069-2. Epub 2009 Sep 2.
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Health related quality of life survey about children and adolescents with juvenile idiopathic arthritis.关于幼年特发性关节炎儿童及青少年的健康相关生活质量调查。
Rheumatol Int. 2009 Jan;29(3):275-9. doi: 10.1007/s00296-008-0672-y. Epub 2008 Aug 9.
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Parent-child agreement across child health-related quality of life instruments: a review of the literature.儿童健康相关生活质量工具中的亲子协议:文献综述
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Arthritis Rheum. 2007 Feb 15;57(1):35-43. doi: 10.1002/art.22473.
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