治疗模式和慢性肺纤维化患者的旅程:一个横截面调查
Nazia Chaudhuri1, Paolo Spagnolo2, Claudia Valenzuela3
1Faculty of Life and Health Sciences, School of Medicine, Ulster University, Magee Campus, Londonderry, UK. nazia.chaudhuri@nhs.net.
患有渐进性肺纤维化 (PPF) 的患者面临显著的诊断延迟,从症状发作到诊断平均为15.5个月. 鉴定PPF的延迟可能会对患者的治疗结果和存活率产生负面影响.
科学领域:
- 肺部病理学 肺部病理学
- 现实世界的证据.
- 纤维化间歇性肺病 纤维化间歇性肺病
背景情况:
- 在欧洲对渐进性肺纤维化 (PPF) 的特征,患者旅程和治疗的理解有限.
- PPF是间歇性肺病 (ILD) 的一种表型,需要进一步的现实世界表征.
- 这项研究解决了PPF患者人口统计学和临床经验方面的知识差距.
研究的目的:
- 描述PPF患者在欧洲现实世界中的人口统计和临床经验.
- 分析PPF患者的诊断延迟和治疗模式.
- 突出PPF管理中未得到满足的需求.
主要方法:
- 在五个欧洲国家 (法国,德国,意大利,西班牙,英国) 的肺病学家和风湿病学家进行了横截面调查.
- 从2022年4月至10月收集的数据,涉及医生确认的ILD和渐进的表型 (不包括异常性肺纤维化) 的患者.
- 对1,335名患者的医生报告数据的描述性分析.
主要成果:
- 该研究包括1,335名患者,平均年龄为60.4岁;58.1%是女性,44.0%是非吸烟者.
- 在首次ILD症状和诊断之间观察到平均延迟15.5个月,其中17.4%的患者最初被误诊.
- 常见的症状包括呼吸不良和咳;常见的并发症是焦虑和胃食道逆流. 15.6%的患者从未接受过ILD治疗.
结论:
- 这项研究为欧洲的PPF患者提供了关键的现实洞察力,详细介绍了诊断延迟和治疗缺口.
- 显著的PPF诊断延迟突出了一个关键问题,可能会对患者的结果和生存产生不利影响.
- 需要进一步的研究和改进的诊断策略,以优化对PPF患者的护理.
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