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《幼年特发性关节炎多维评估报告》(JAMAR)的波斯语版本。

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

机构信息

Department of Pediatrics and Rheumatology, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Karegar Ave., Tehran, 14114, Islamic Republic of Iran.

Department of Pediatrics, Tehran University of Medical Sciences, Tehran, Islamic Republic of Iran.

出版信息

Rheumatol Int. 2018 Apr;38(Suppl 1):171-178. doi: 10.1007/s00296-018-3958-8. 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 Farsi 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 three 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 102 JIA patients (14.7% systemic JIA, 67.6% oligoarticular, 15.7% RF negative polyarthritis, 2.0% other categories) and 198 healthy children, were enrolled in three paediatric rheumatology centres. Notably, none of the enrolled JIA patients is affected with enthesitis-related arthritis or undifferentiated arthritis. The JAMAR components discriminated healthy subjects from JIA patients. All JAMAR components revealed satisfactory psychometric performances. In conclusion, the Farsi 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

《幼年特发性关节炎多维评估报告》(JAMAR)是一种新的家长/患者报告结局测量工具,可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 JAMAR 家长版和患者版的跨文化适应和验证结果,语言为波斯语。我们测试了 10 名 JIA 患儿及其家长对问卷的阅读理解能力。每个参与中心都被要求收集人口统计学、临床数据和 JAMAR,并在 100 名连续 JIA 患者或 6 个月内所有连续就诊的患者中进行,同时让 100 名健康儿童及其家长填写 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:三个李克特假设、地板/天花板效应、内部一致性、克朗巴赫α、量表间相关性、测试-重测信度和结构效度(收敛和判别效度)。共有 102 名 JIA 患者(14.7%全身型 JIA、67.6%少关节型、15.7% RF 阴性多关节型、2.0%其他类型)和 198 名健康儿童在三个儿科风湿病中心参与研究。值得注意的是,没有纳入的 JIA 患者患有附着点炎相关关节炎或未分化关节炎。JAMAR 的各个组成部分能够区分健康受试者和 JIA 患者。所有 JAMAR 成分均表现出令人满意的心理计量学性能。总之,JAMAR 的波斯语版本是评估 JIA 患儿的有效工具,适用于常规临床实践和临床研究。

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