有关先天性多发性关节炎的移动性措施的内容有效性:让临床医生和有经验的人参与
Ahlam Zidan1,2, Laurie Snider1, Jaclyn Sions3
1School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
Frontiers in rehabilitation sciences
|August 20, 2025
概括
对于患有Arthrogryposis multiplex congenita (AMC) 的儿童,现有的移动性措施显示出良好的内容有效性,但缺乏全面性. 用疼痛和环境因素等概念来增强这些工具对于AMC的整体功能性移动性评估至关重要.
科学领域:
- 儿童康复服务
- 临床测量
- 儿童健康
背景情况:
- 在患有Arthrogryposis multiplex congenita (AMC) 的儿童中,下肢损伤和运动限制是常见的.
- 目前对AMC的移动性评估工具缺乏正式验证,可能无法捕捉到功能移动性的全部范围.
- 需要标准化和验证的工具来准确评估和跟踪AMC儿童的结果.
研究的目的:
- 确定AMC儿童常用的移动性措施的内容有效性.
- 通过COSMIN和ICF框架评估选择的流动性措施的可理解性,相关性和全面性.
- 确定现有评估AMC功能移动性的措施中的差距.
主要方法:
- 功能性移动度量表 (FMS),吉列特功能性评估问卷 (FAQ),儿童功能独立度量表 (WeeFIM) 和患者报告结果测量信息系统 (PROMIS) 的项目与ICF类别相关.
- 使用COSMIN标准的专家小组评估了内容的有效性,其中包括有实践经验的人,临床医生和研究人员.
- 计算了评级者之间的可靠性,内容有效性指数 (CVI) 和修改的Kappa (k*).
主要成果:
- 发现了大量的评价者之间的一致性 (κ = 0. 79).
- 大多数概念与"活动和参与" (84.4%) 相关,其中"环境因素" (8.9%) 和"身体功能" (6.7%) 占比有限.
- 测量结果显示了良好的内容有效性 (CVI/k* 0.91-1.00),除了PROMIS Mobility Young Adult (≤0.82),但缺乏全面性,缺少疼痛,疲劳和移动辅助等概念.
结论:
- FMS,FAQ,WeeFIM和PROMIS (家长代理/儿科) 在评估AMC儿童的移动性方面具有良好的内容有效性.
- 没有一项评估措施充分反映了AMC儿童的多样化移动体验.
- 整合疼痛,疲劳,环境因素和补偿策略等缺失的概念对于AMC的综合功能性移动性评估至关重要.
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