四十年的ALS护理:流行病学,临床过程和管理变化的回顾性研究
Mats Bjørnstadjordet1,2, Helene Ballo Kvernmo1,2, Geir Bråthen1,2
1Department of Neurology and Clinical Neurophysiology, St Olav's University Hospital, Trondheim, Norway.
Amyotrophic lateral sclerosis & frontotemporal degeneration
|February 12, 2026
概括
挪威特伦德拉格 (Trøndelag) 的肌缩侧面硬化症 (ALS) 发病率正在上升. 尽管越来越多地使用支持性治疗,如利卢和通风,患者的存活率在38年内保持不变.
科学领域:
- 神经学 神经学
- 流行病学 流行病学
背景情况:
- 近几十年来,肌缩侧面硬化症 (ALS) 管理已经看到了几项干预措施.
- 人口水平的研究对于了解这些ALS干预措施的影响至关重要.
研究的目的:
- 描述挪威特伦德拉格县ALS的流行病学,病程和临床管理.
- 为了分析ALS发病率,诊断,存活率和治疗在38年期间的趋势.
主要方法:
- 挪威特伦德拉格县在1986年至2024年期间诊断的所有ALS病例的回顾性图表审查.
- 使用标准化的电子案例报告表格提取数据.
- 将患者分为四个诊断时间组进行分层.
主要成果:
- 总共有429名ALS患者被纳入,症状发作的中位数年龄为68岁.
- 年龄标准化的ALS发病率随着时间的推移显著增加 (p = 0.002).
- 诊断延迟的中位数为13个月,平均存活时间为28个月. 瑞卢的使用,皮肤内镜胃口术和非侵入性通风 (NIV) 的使用增加.
结论:
- 这项研究显示,特伦德拉格地区的ALS发病率正在上升.
- 随着时间的推移,对ALS的支持性干预措施的采用越来越多.
- 尽管进行了干预,但ALS患者的中位生存率仍然稳定.
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