我的MS:为芬兰多发性硬化症患者提供患者报告结果的接口
Päivi Hämäläinen1,2,3, Matias Viitala4,3, Hanna Kuusisto5,6
1From the Department of Psychology and Speech-Language Pathology, University of Turku, Turku, Finland.
International journal of MS care
|October 10, 2024
概括
通过MyMS接口生成的患者数据有助于个性化的多发性硬化症 (MS) 护理. 该系统收集患者报告的结果 (PROs),显示MS患者的轻微生活质量影响和疲劳.
科学领域:
- 神经学 神经学
- 数字健康数字健康
- 患者报告的结果
背景情况:
- 患者生成的数据对于个性化的多发性硬化症 (MS) 治疗至关重要.
- 芬兰多发性硬化病登记处开发了MyMS,用于系统地收集患者报告的结果 (PRO).
研究的目的:
- 描述MyMS患者界面,用于在MS中收集PRO.
- 报告MyMS系统的使用情况和初步发现.
主要方法:
- MyMS收集人口统计,生活方式和疾病数据.
- 经过验证的问卷包括生活质量问卷 (15D),多发性硬化影响量表 (MSIS-29) 和疲劳严重程度量表 (FSS).
- 增加的其他PRO措施包括PREDSS,EQ-5D,FSMC和MSNQ.
主要成果:
- 截至2023年1月,有1201名多发性硬化症患者提供了数据.
- 15D,MSIS-29和FSS是使用最多的PRO措施.
- 患者报告轻微的生活质量问题,疲劳和认知问题.
结论:
- 在17个县,MyMS覆盖了芬兰10%的MS患者.
- 新的PRO增加了参与度;建议将其整合到EHR中,以便共享决策.
- 专业项目增强了共享决策,降低了文档负担.
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