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《青少年关节炎多维评估报告》(JAMAR)保加利亚语版。

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

机构信息

Department of Paediatric Rheumatology, University Children Hospital, Acad.Iv.Geshov 11, 1606, Sofia, Bulgaria.

Department of Paediatrics, Varna Medical University, Varna, Bulgaria.

出版信息

Rheumatol Int. 2018 Apr;38(Suppl 1):75-82. doi: 10.1007/s00296-018-3940-5. 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 Bulgarian language. The reading comprehension of the questionnaire was tested in 10 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 183 JIA patients (12% systemic, 53.6% oligoarticular, 23.5% RF negative polyarthritis, 10.9% other categories) and 100 healthy children were enrolled in two centres. The JAMAR components discriminated well healthy subjects from JIA patients. Notably, there is no significant difference between the healthy subjects and their affected peers in the school-related problems variable. All JAMAR components revealed good psychometric performances. In conclusion, the Bulgarian 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 clinical research.

摘要

《青少年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,能够全面评估儿童青少年特发性关节炎(JIA)患者的疾病状况。我们报告了 JAMAR 家长版和患者版在保加利亚语中的跨文化适应性和验证结果。我们在 10 名 JIA 患者和家长中测试了问卷的阅读理解能力。每个参与中心被要求收集人口统计学、临床数据以及 100 名连续 JIA 患者或 6 个月内所有连续就诊患者的 JAMAR,并向 100 名健康儿童及其家长发放 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、量表间相关性、重测信度和结构效度(收敛和判别效度)。在两个中心共纳入了 183 名 JIA 患者(12%全身型、53.6%少关节型、23.5% RF 阴性多关节型、10.9%其他类型)和 100 名健康儿童。JAMAR 各组成部分能够很好地区分健康受试者和 JIA 患者。值得注意的是,在与学校相关的问题变量中,健康受试者与受影响的同龄人之间没有显著差异。所有 JAMAR 组成部分均表现出良好的心理计量学性能。总之,保加利亚版的 JAMAR 是评估 JIA 儿童的有效工具,适用于常规临床实践和临床研究。

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