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一种混合方法的方法来开发SMA独立度表的门诊模块
Hannah Staunton1, Sophie Cleanthous2, Vanda Teodoro3
1Roche Products Ltd, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK.
Journal of neuromuscular diseases
|September 24, 2023
概括
这项研究开发了27项SMAIS-门诊模块,用于测量脊髓肌缩 (SMA) 患者的独立性. 新的尺度量化了出行和近出行SMA患者的移动性任务援助.
科学领域:
- 神经学 神经学
- 康复医学 康复医学 康复医学
- 患者报告的结果
背景情况:
- 关于脊椎肌肉缩 (SMA) 患者的症状和影响的有限的定性数据.
- 为SMA独立度量表 (SMAIS) 开发 ambulant 模块,以量化与流动性相关的援助需求.
研究的目的:
- 开发一个以患者为中心的模块,用于评估SMA的行医和近行医患者的独立性.
- 为了了解这个患者群体的独立性定义.
主要方法:
- 混合方法方法使用三个波的半结构面试与SMA患者和护理人员.
- 使用了概念诱导,项目生成和认知总结.
- 拉什测量理论 (RMT) 用于测量属性的初步分析.
主要成果:
- 最初产生了42个移动性和11个日常生活工具活动 (iADL) 项目.
- 独立性被定义为用辅助工具完成任务,但没有个人协助,导致项目精细化.
- 在删除iADL项目并减少项目重叠后,最终完成了以27项移动为重点的SMAIS-门诊模块.
结论:
- 27项的SMAIS-门诊模块显示了在SMAIS的救护人员或近乎救护人员中使用的初步支持.
- 建议进行进一步的大规模分析,以验证尺度的心理特征.
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