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《青少年关节炎多维评估报告》(JAMAR)意大利语版。

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

机构信息

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

Dipartimento di Pediatria, Università di Genova, Genoa, Italy.

出版信息

Rheumatol Int. 2018 Apr;38(Suppl 1):251-258. doi: 10.1007/s00296-018-3960-1. 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 Italian 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 1296 JIA patients (7.2% systemic, 59.5% oligoarticular, 21.4% RF negative polyarthritis, 11.9% other categories) and 100 healthy children, were enrolled in 18 centres. The JAMAR components discriminated well healthy subjects from JIA patients except for the Health Related Quality of Life (HRQoL) Psychosocial Health (PsH) subscales. All JAMAR components revealed good psychometric performances.In conclusion, the Italian 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)的疾病状况。我们报告了意大利语版 JAMAR 的跨文化适应性和验证结果。我们测试了 10 名 JIA 父母和患者对问卷的阅读理解能力。每个参与中心被要求在 100 名连续 JIA 患者或在 6 个月期间连续看到的所有患者中收集人口统计学、临床数据和 JAMAR,并向 100 名健康儿童及其父母施测 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(收敛和区分效度)。共有 1296 名 JIA 患者(7.2%全身性,59.5%少关节型,21.4%RF 阴性多关节炎,11.9%其他类型)和 100 名健康儿童在 18 个中心入组。JAMAR 各成分能够很好地区分健康受试者和 JIA 患者,除了健康相关生活质量(HRQoL)心理社会健康(PsH)子量表。所有 JAMAR 成分均显示出良好的心理计量学性能。总之,意大利语版的 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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