马方综合征患者疲劳的决定因素:使用PROMS进行的一项研究
Ines Cavalier1, Leslie Toko Kamga2, Laurence Morin3
1Department of Epidemiology, Biostatistics and Clinical Research, Hôpital Bichat- Claude Bernard, INSERM CIC-EC 1425, AP-HP.Nord-Université Paris-Cité, Paris, France.
Orphanet journal of rare diseases
|July 11, 2025
概括
在Marfan综合征 (MFS) 中,疲劳是常见的. 干扰日常生活的疼痛是这种疲劳的主要驱动因素,这表明疼痛管理可以改善MFS患者的生活质量.
科学领域:
- 心血管遗传学 心血管遗传学
- 结合组织疾病 结合组织疾病
- 患者报告的结果
背景情况:
- 马凡综合征 (MFS) 患者经常报告疲劳,但其原因和日常影响尚不清楚.
- 这项研究旨在量化MFS个体的疲劳水平并确定相关因素.
- 通过使用已建立的电子队列 (ComPaRe Marfan),研究使用FACIT问卷评估了疲劳.
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