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多发性硬化症知识问卷:一种用于近期诊断患者的自我管理工具。

The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients.

机构信息

Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C Besta, Milan, Italy.

出版信息

Mult Scler. 2010 Jan;16(1):100-11. doi: 10.1177/1352458509352865. Epub 2009 Dec 7.

Abstract

There are few studies on patient knowledge in multiple sclerosis (MS), and only two published questionnaires. The objective of this article was to develop and validate the MS Knowledge Questionnaire (MSKQ), a self-assessed instrument for newly diagnosed MS patients. Thirty multiple-choice statements, conceived to test MS knowledge, were produced by a multidisciplinary panel and pre-tested on three MS patients, resulting in an intermediate 26-item version. This was tested on 54 MS patients for internal consistency, content and construct validity (validation sample I). The final (25-item) MSKQ was a primary outcome measure in the SIMS-Trial on an information aid to newly diagnosed MS patients. Postal responses of SIMS-Trial participants to the MSKQ a month after intervention (validation sample II) were analysed. Median MSKQ scores in validation samples I and II were, respectively, 18 (range 9-23) and 17 (range 3-24). Acceptability, internal consistency (Kuder-Richardson-20 formula 0.76) and content validity were good. Educational attainment and receiving the information aid were the main independent predictors of MS knowledge. Other predictors were female sex (positive association) and disease duration (negative association). In conclusion, the MSKQ has good clinimetric properties and is sensitive to an educational intervention. We propose the MSKQ as a brief instrument for clinical practice and research.

摘要

关于多发性硬化症(MS)患者的知识,目前研究较少,仅有两份已发表的调查问卷。本文旨在研发并验证多发性硬化症知识问卷(MSKQ),这是一种专为新诊断 MS 患者设计的自我评估工具。一个多学科小组提出了 30 个多项选择题,旨在测试 MS 知识,经 3 名 MS 患者预测试后,形成了一个包含 26 个题目的中间版本。该问卷对 54 名 MS 患者进行了内部一致性、内容和结构有效性的测试(验证样本 I)。最终(25 个题)的 MSKQ 是新诊断 MS 患者信息辅助治疗 SIMS 试验的主要结果衡量指标。SIMS 试验参与者在干预后一个月通过邮寄方式回复 MSKQ(验证样本 II),并对其进行了分析。验证样本 I 和 II 的 MSKQ 中位数得分分别为 18(范围 9-23)和 17(范围 3-24)。该问卷具有良好的可接受性、内部一致性(Kuder-Richardson-20 公式 0.76)和内容有效性。教育程度和接受信息辅助是 MS 知识的主要独立预测因素。其他预测因素包括女性(正相关)和疾病持续时间(负相关)。总之,MSKQ 具有良好的临床特性,且对教育干预敏感。我们建议将 MSKQ 作为一种用于临床实践和研究的简洁工具。

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