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青少年关节炎多维评估报告(JAMAR)的埃及阿拉伯语版本。

The Egyptian Arabic version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR).

机构信息

Department of Rheumatology and Rehabilitation, Ain Shams University, 2 Italian Hospital St Abbassia, 11381, Cairo, Egypt.

Clinica Pediatrica e Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO), Istituto Giannina Gaslini, Via Gaslini 5, 16147, Genoa, Italy.

出版信息

Rheumatol Int. 2018 Apr;38(Suppl 1):155-161. doi: 10.1007/s00296-018-3949-9. Epub 2018 Apr 7.

Abstract

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient-reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Egyptian Arabic language. The reading comprehension of the questionnaire was tested in ten JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach's alpha, interscale correlations, test-retest reliability, and construct validity (convergent and discriminant validity). A total of 100 JIA patients (20.0% systemic JIA, 40.0% undifferentiated arthritis, 24.0% RF negative polyarthritis, 16.0% other categories) and 100 healthy children were enrolled in one paediatric rheumatology centre. The JAMAR components discriminated well healthy subjects from JIA patients. All JAMAR components revealed satisfactory psychometric performances. In conclusion, the Egyptian Arabic version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and in clinical research.

摘要

《幼年特发性关节炎多维评估报告》(JAMAR)是一种新的家长/患者报告的结局测量工具,能够全面评估幼年特发性关节炎(JIA)患儿的疾病状况。我们报告了该问卷的家长版和患者版在埃及阿拉伯语中的跨文化适应性和验证结果。我们在 10 名 JIA 患儿的家长和患者中测试了问卷的阅读理解能力。每个参与中心被要求收集 100 名连续 JIA 患者或在 6 个月期间看到的所有连续患者的人口统计学、临床数据和 JAMAR,并向 100 名健康儿童及其家长施测 JAMAR。统计验证阶段探讨了 JAMAR 的描述性统计和心理计量学问题:3 个李克特假设、地板/天花板效应、内部一致性、克朗巴赫α系数、量表间相关性、测试-重测信度和结构效度(收敛和判别效度)。共纳入了 100 名 JIA 患儿(20.0%全身型 JIA、40.0%未分化关节炎、24.0%RF 阴性多关节炎、16.0%其他类型)和 100 名健康儿童,他们来自于一家儿科风湿病中心。JAMAR 的各组成部分能很好地区分健康儿童和 JIA 患儿。JAMAR 的所有组成部分都表现出了令人满意的心理计量学性能。总之,JAMAR 的埃及阿拉伯语版本是评估 JIA 患儿的有效工具,既适合于常规临床实践,也适合于临床研究。

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