Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Center Ljubljana, Bohoriceva 20, 1525, Ljubljana, Slovenia.
Clinica Pediatrica e Reumatologia, Paediatric Rheumatology International Trials Organisation (PRINTO), Istituto Giannina Gaslini, Via Gaslini 5, 16147, Genoa, Italy.
Rheumatol Int. 2018 Apr;38(Suppl 1):363-369. doi: 10.1007/s00296-018-3974-8. Epub 2018 Apr 7.
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 Slovene 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 100 JIA patients (7.0% systemic, 47.0% oligoarticular, 22.0% RF negative polyarthritis, 24.0% other categories) and 120 healthy children, were enrolled. The JAMAR components discriminated well healthy subjects from JIA patients, except for the Health-Related Quality of Life, Psychosocial Health subscales. All JAMAR components revealed good psychometric performances. In conclusion, the Slovene 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.
《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,能够全面评估幼年特发性关节炎(JIA)患儿的疾病状况。我们报告了斯洛文尼亚语版 JAMAR 的跨文化适应性和验证结果。我们在 10 名 JIA 患儿及其家长中测试了问卷的阅读理解能力。每个参与中心都被要求在 100 名连续 JIA 患儿或 6 个月内所有连续就诊的患儿中收集人口统计学、临床数据和 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系数、量表间相关性、重测信度和结构效度(收敛和判别效度)。共纳入 100 名 JIA 患儿(7.0%全身型、47.0%少关节型、22.0%RF 阴性多关节型、24.0%其他类型)和 120 名健康儿童。JAMAR 各成分能很好地区分健康受试者和 JIA 患儿,除了健康相关生活质量和心理社会健康子量表。所有 JAMAR 成分均表现出良好的心理计量学性能。总之,斯洛文尼亚语版 JAMAR 是一种评估 JIA 患儿的有效工具,适用于常规临床实践和临床研究。