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一种新的青少年特发性关节炎临床护理方法:青少年关节炎多维评估报告。

A new approach to clinical care of juvenile idiopathic arthritis: the Juvenile Arthritis Multidimensional Assessment Report.

机构信息

Pediatria II, Istituto G. Gaslini, Largo G. Gaslini 5, Genoa, Italy.

出版信息

J Rheumatol. 2011 May;38(5):938-53. doi: 10.3899/jrheum.100930. Epub 2011 Mar 1.

Abstract

OBJECTIVE

To develop and test a new multidimensional questionnaire for assessment of children with juvenile idiopathic arthritis (JIA) in standard clinical care.

METHODS

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) includes 15 parent or patient-centered measures or items that assess well-being, pain, functional status, health-related quality of life, morning stiffness, disease activity, disease status and course, joint disease, extraarticular symptoms, side effects of medications, therapeutic compliance, and satisfaction with illness outcome. The JAMAR is proposed for use as both a proxy-report and a patient self-report, with the suggested age range of 7-18 years for use as a self-report. From March 2007 to September 2009, the questionnaire was completed by the parents of 618 children with JIA in 1814 visits and by 332 children in 749 visits.

RESULTS

The JAMAR was found to be feasible and to possess face and content validity. All parents and children reported that the questionnaire was simple and easy to understand. Completion and scoring appeared to be quick, requiring < 15 minutes. There were very few missing data. Parents' proxy-reported and children's self-reported data were remarkably concordant. The JAMAR provided thorough information for the study patients about recent medical history and current health status. It performed similarly across different children's ages and characterized the level of disease activity and disability well.

CONCLUSION

The development of the JAMAR introduces a new approach in pediatric rheumatology practice. This new questionnaire may help enhance the quality of care of children with JIA.

摘要

目的

开发并测试一种新的多维问卷,用于在标准临床护理中评估青少年特发性关节炎(JIA)患儿。

方法

青少年关节炎多维评估报告(JAMAR)包括 15 项家长或患者为中心的措施或项目,用于评估整体健康、疼痛、功能状态、健康相关生活质量、晨僵、疾病活动度、疾病状态和病程、关节疾病、关节外症状、药物副作用、治疗依从性和对疾病结局的满意度。JAMAR 拟用于代理报告和患者自评,建议 7-18 岁的年龄范围用于自评。2007 年 3 月至 2009 年 9 月,该问卷在 1814 次就诊中由 618 名 JIA 患儿的家长填写,在 749 次就诊中由 332 名患儿填写。

结果

JAMAR 具有可行性,并具有表面效度和内容效度。所有家长和儿童都表示问卷简单易懂。完成和评分似乎很快,不到 15 分钟。很少有缺失数据。家长的代理报告和儿童的自我报告数据非常一致。JAMAR 为研究患者提供了有关近期病史和当前健康状况的详细信息。它在不同儿童年龄中表现相似,很好地描述了疾病活动度和残疾程度。

结论

JAMAR 的开发引入了儿科风湿病学实践中的一种新方法。这种新问卷可能有助于提高 JIA 患儿的护理质量。

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