遗传性血管患者的生态瞬间评估:可行性和可接受性受控研究
Monica Parati1, Luca Ranucci1, Azzurra Cesoni Marcelli1
1Department of Internal Medicine and Rehabilitation, Istituti Clinici Scientifici Maugeri IRCCS, Milan, Italy.
Frontiers in digital health
|January 28, 2026
概括
生态瞬间评估 (EMA) 是一种可行且可接受的方法,用于监测遗传性血管 (HAE) 患者的影响. 这种方法有效地捕获现实生活中的情感数据,支持其在临床环境中用于HAE患者.
科学领域:
- 精神病学和心理学 精神病学和心理学
- 罕见疾病 罕见疾病
- 数字健康数字健康
背景情况:
- 遗传性血管 (HAE) 显著影响患者的生活质量.
- 传统的监测患者情绪的方法有局限性.
- 生态瞬间评估 (EMA) 为实时,现场数据收集提供了一个潜在的解决方案.
研究的目的:
- 评估EMA协议对HAE患者影响监测的可行性.
- 与健康对照组 (CTR) 相比,评估EMA协议在HAE患者中的可接受性.
主要方法:
- 一项为期16周的EMA研究,涉及HAE患者和CTR.
- 通过REDCapTM管理的每周EMA调查以评估影响.
- 可行性指标包括招聘,响应和完成率;可接受性是使用视觉模拟尺度来衡量的.
主要成果:
- 招募率高 (93%),有12名HAE患者和14名CTR.
- 响应率≥92%和完成率≥96%在两个组.
- EMA协议在HAE患者和CTR中都表现出高可接受性,HAE患者发现它有帮助和激励思维.
结论:
- EMA是一种高度可行的和可接受的方法,用于对HAE的影响监测.
- 像HAE这样的罕见疾病的存在并不妨碍EMA的应用.
- EMA是HAE临床环境中个性化心理支持的宝贵工具.
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