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青少年特发性关节炎患者代理报告的健康相关生活质量:儿科风湿病国际试验组织多国生活质量队列研究

Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: the Pediatric Rheumatology International Trials Organization multinational quality of life cohort study.

作者信息

Oliveira Sheila, Ravelli Angelo, Pistorio Angela, Castell Esteban, Malattia Clara, Prieur Anne Marie, Saad-Magalhães Claudia, Murray Kevin J, Bae Sang-Cheol, Joos Rik, Foeldvari Ivan, Duarte-Salazar Carolina, Wulffraat Nico, Lahdenne Pekka, Dolezalova Pavla, de Inocencio Jaime, Kanakoudi-Tsakalidou Florence, Hofer Michael, Nikishina Irina, Ozdogan Huri, Hashkes Philip J, Landgraf Jeanne M, Martini Alberto, Ruperto Nicolino

机构信息

IRCCS G. Gaslini, Pediatria II, Reumatologia, Pediatric Rheumatology International Trials Organization, Genoa, Italy.

出版信息

Arthritis Rheum. 2007 Feb 15;57(1):35-43. doi: 10.1002/art.22473.

Abstract

OBJECTIVE

To investigate the proxy-reported health-related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA).

METHODS

In this multinational, multicenter, cross-sectional study, HRQOL of patients with JIA was assessed through the Child Health Questionnaire (CHQ) and was compared with that of healthy children of similar age from the same geographic area. Potential determinants of HRQOL included demographic data, physician's and parent's global assessments, measures of joint inflammation, Childhood Health Assessment Questionnaire (CHAQ), and erythrocyte sedimentation rate.

RESULTS

A total of 6,639 participants (3,324 with JIA and 3,315 healthy) were enrolled from 32 countries. The mean +/- SD physical and psychosocial summary scores of the CHQ were significantly lower in patients with JIA than in healthy children (physical: 44.5 +/- 10.6 versus 54.6 +/- 4.0, P < 0.0001; psychosocial: 47.6 +/- 8.7 versus 51.9 +/- 7.5, P < 0.0001), with the physical well-being domain being most impaired. Patients with persistent oligoarthritis had better HRQOL compared with other subtypes, whereas HRQOL was similar across patients with systemic arthritis, polyarthritis, and extended oligoarthritis. A CHAQ score >1 and a pain intensity rating >3.4 cm on a 10-cm visual analog scale were the strongest determinants of poorer HRQOL in the physical and psychosocial domains, respectively.

CONCLUSION

We found that patients with JIA have a significant impairment of their HRQOL compared with healthy peers, particularly in the physical domain. Physical well-being was mostly affected by the level of functional impairment, whereas the intensity of pain had the greatest influence on psychosocial health.

摘要

目的

调查幼年特发性关节炎(JIA)患者中代理报告的健康相关生活质量(HRQOL)及其决定因素。

方法

在这项跨国、多中心横断面研究中,通过儿童健康问卷(CHQ)评估JIA患者的HRQOL,并与来自同一地理区域的年龄相仿的健康儿童进行比较。HRQOL的潜在决定因素包括人口统计学数据、医生和家长的总体评估、关节炎症指标、儿童健康评估问卷(CHAQ)以及红细胞沉降率。

结果

共从32个国家招募了6639名参与者(3324名JIA患者和3315名健康儿童)。JIA患者CHQ的身体和心理社会综合评分的平均值±标准差显著低于健康儿童(身体:44.5±10.6对54.6±4.0,P<0.0001;心理社会:47.6±8.7对51.9±7.5,P<0.0001),其中身体幸福感领域受损最为严重。与其他亚型相比,持续性少关节炎患者的HRQOL更好,而全身型关节炎、多关节炎和扩展性少关节炎患者的HRQOL相似。CHAQ评分>1以及在10厘米视觉模拟量表上疼痛强度评分>3.4厘米分别是身体和心理社会领域HRQOL较差的最强决定因素。

结论

我们发现,与健康同龄人相比,JIA患者的HRQOL有显著损害,尤其是在身体领域。身体幸福感主要受功能损害程度的影响,而疼痛强度对心理社会健康影响最大。

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