运动神经元疾病:对患者报告的症状患病率,严重程度和息护理需求的点患病率研究
Fiona Runacres1,2,3,4, Susan Mathers1,5, Sarah Cm Lee1,3
1Calvary Health Care Bethlehem, Caulfield South, VIC, Australia.
Palliative medicine
|August 9, 2023
概括
患有运动神经元疾病的患者经历了较高的症状负担,运动和功能症状最为普遍. 接受息护理或生命最后几个月的人报告了更严重的症状.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 症状管理 症状管理
背景情况:
- 运动神经元疾病 (MND) 是一种罕见的,使人衰弱的神经系统疾病.
- 人们对MND患者所经历的症状负担的理解有限.
- 息和全科医生往往缺乏评估MND患者需求的经验.
研究的目的:
- 为了确定运动神经元疾病患者的症状的患病率和严重程度.
- 探索症状负担和群体如何根据表型,功能状态和息护理参与而不同.
- 为了确定临终期患者的症状变化.
主要方法:
- 进行了点患病率研究.
- 患者报告的症状使用修改后的IPOS-Neuro工具评估了41个项目.
- 这项研究包括了102名患有运动神经元疾病的患者.
主要成果:
- 患者报告了17个症状的中位数,其中3个被评为严重/压倒性.
- 运动和功能症状占主导地位.
- 严重症状增加与获得息治疗,在生命的最后6个月,以及中度/重度功能障碍有关.
结论:
- 运动神经元疾病患者面临着相当大的症状负担.
- 需要一个经过验证的,针对MND的工具来准确评估症状,同时考虑表型变异.
- 进一步的研究应该指导基于证据的治疗常见和严重症状.
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