间歇性肺部疾病患者的旅程:流动性,独立性和心理负担
Ekaterina Krauss1,2, Silke Tello1,2, Daniel Kuhlewey1,3
1European IPF/ILD Registry & Biobank (eurIPFreg/bank, eurILDreg/bank), 35392 Giessen, Germany.
Journal of clinical medicine
|December 30, 2025
概括
间歇性肺部疾病 (ILD) 显著影响日常生活,尽管使用抗纤维素治疗,但会导致呼吸困难和痛苦. 解决虚弱,焦虑和不活动是改善肺纤维化患者生活质量的关键.
科学领域:
- 肺部医学 肺部医学
- 患者报告的结果
- 间歇性肺病 间歇性肺病
背景情况:
- 间歇性肺部疾病 (ILDs) 严重影响日常生活,影响移动性,独立性和情绪健康.
- 目前的抗纤维菌疗法可能会减缓疾病的进展,但不能完全解决患者的经历,包括呼吸困难,咳,虚弱和心理困扰.
- 了解患者对功能能力,自我管理和心理健康的真实世界观点对于识别超出生理学措施的可治疗特征至关重要.
研究的目的:
- 捕捉现实世界患者对ILD患者功能能力,自我管理和心理健康的观点.
- 为了确定可治疗的特征,影响ILD患者的生活质量,超出传统的生理措施.
- 为提高肺纤维化患者的自主性和福祉提供多学科策略的信息.
主要方法:
- 在2024年9月至2025年1月期间,进行了一项跨部门定量在线调查.
- 医生确认的ILD患者完成了标准化的仪器,评估呼吸不良 (MRC),咳强度 (VAS-Cough),脆弱性 (CFS) 和与健康有关的生活质量 (EQ-5D-5L).
- 数据在物理,功能和心理社会领域进行了描述性分析.
主要成果:
- 69名受访者,主要是患有异常性肺纤维化,报告了实质性的功能限制,常见的氧气使用,随着时间的推移增加了脆弱性.
- 呼吸不良和咳仍然是负担,导致与健康相关的生活质量下降,焦虑/抑郁症,活动限制和疼痛的高率.
- 尽管对护理感到满意,但患者报告说,他们仍然需要心理支持和关于治疗和疾病管理的更清晰的沟通.
结论:
- 患有ILD的人面临着重大的身体和情绪挑战,尽管抗纤维素治疗和专家护理.
- 虚弱,呼吸不全,不活动,焦虑和社会隔离是影响肺纤维化健康的关键可治疗特征.
- 综合康复,心理社会支持和患者教育的多学科策略对于保持自主性和提高生活质量至关重要.
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