评估日本肺部沙丘病患者的疾病负担:一个基于问卷的研究
Hiromi Tomioka1, Hiroaki Sato2, Mutsumi Kanakubo3
1Respiratory Medicine, Kobe City Medical Center West Hospital, Kobe, JPN.
Cureus
|November 14, 2025
概括
日本的型硬化症患者因疲劳和小纤维神经病变 (SFN) 症状而遭受重大负担. 口服皮质类固醇 (OCS) 的使用与疲劳和SFN的增加相关,强调需要谨慎管理以改善生活质量.
科学领域:
- 肺部医学 肺部医学
- 类风湿病学 类风湿病学
- 神经学 神经学
背景情况:
- 石病是一种全身性颗粒性疾病,会影响多个器官,通常是肺部.
- 它通过疼痛和疲劳等全身症状显著影响与健康相关的生活质量 (HRQoL).
- 对于日本的型硬化症患者,患者报告的结果数据有限,特别是关于口服皮质类固醇 (OCS) 的使用.
研究的目的:
- 为了评估疾病负担,包括HRQoL,疲劳,和小纤维神经病变 (SFN) 症状,在日本患者肺癌类沙丘病.
- 评估OCS治疗对患者报告结果的影响.
- 提供第一个评价国王的 Sarcoidosis 调查问卷 (KSQ) 在日本的得分.
主要方法:
- 一份邮寄的问卷调查对158名日本肺性沙丘病患者进行了调查.
- 患者报告的结局是使用国王的 Sarcoidosis 问卷 (KSQ),疲劳评估量表 (FAS) 和小纤维神经病症查清单 (SFNSL) 来衡量的.
- 数据分析比较了接受不同剂量OCS的患者之间的结果.
主要成果:
- 降低HRQoL的指标是KSQ总体健康状况得分的中位数为54.3.3.
- 疲劳是普遍存在的 (72.3%的FAS得分≥22),而79.7%的人怀疑SFN (SFNSL≥11).
- 较高的OCS剂量与较低的KSQ药物评分相关,极度疲劳增加 (26%与14%),以及更高的SFN怀疑 (90%与70%).
结论:
- 这项研究量化了日本肺部沙丘病患者疲劳和SFN症状的重大负担.
- 使用OCS似乎与疲劳和SFN症状的增加有关,这表明治疗负担更高.
- 定期监测和管理疲劳和SFN症状对于优化OCS治疗和最大限度地降低沙尔科毒症患者的HRQoL损伤至关重要.
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