关于诊断,管理和负担的患者经验 泛性皮质银病:一个国际网络调查和定性访谈研究
Mark Lebwohl1, Hideki Fujita2, Kilian Eyerich3
1Department of Dermatology, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Journal of psoriasis and psoriatic arthritis
|December 1, 2025
概括
泛性性牛皮 (GPP) 显著影响生活质量,引起焦虑和痛苦. 患者面临诊断延迟,担心爆发和治疗,强调需要更好的医疗保健意识.
科学领域:
- 皮肤病学 皮肤病学
- 患者报告的结果
- 慢性疾病管理 慢性疾病管理
背景情况:
- 泛性性牛皮 (GPP) 是一种罕见的,严重的,慢性中性恋性皮肤病.
- GPP与斑块性牛皮不同,呈红疹和无菌疹.
- 有限的以患者为中心的数据存在于GPP对生活质量 (QoL) 的影响.
研究的目的:
- 评估GPP对身体和情绪的QOL影响.
- 了解多个国家的GPP患者的体验.
主要方法:
- 使用了基于网络的调查和电话采访.
- 量化指标包括DLQI,PSS和最糟糕的GPP疼痛NRS.
- 中国,日本,英国和美国的GPP成年人参与了.
主要成果:
- 诊断往往延迟,48%的患者见过4名以上的医生.
- GPP显著影响了身体和精神的质量,引起了焦虑.
- 平均DLQI为10.2;症状得分在爆发期间更高.
结论:
- GPP显著影响日常生活,即使没有火焰.
- 患者担心爆发,症状,治疗和疾病传播.
- 提高医疗保健专业人员对GPP的认识和理解至关重要.
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