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皮肤肌肉炎患者的皮肤表现,它们只在皮肤深处吗?
Stephanie McKee1, Jason Xenakis2, Harriet Makin3
1Clinical Outcomes Assessment, Clarivate, London, UK. stephanie.mckee@clarivate.com.
Dermatology and therapy
|September 12, 2024
概括
皮肤肌肉炎 (DM) 显著影响患者的日常生活和情绪健康,皮肤表现如皮疹和是最常见的. 了解患者的体验对于开发有效的治疗方法和结果措施至关重要.
科学领域:
- 类风湿病学 类风湿病学
- 皮肤病学 皮肤病学
- 自免疫性疾病 自免疫性疾病
背景情况:
- 皮肤肌肉炎 (DM) 是一种罕见的,使人虚弱的自身免疫性疾病,影响成人和儿童.
- 对于DM,患者报告的经验和验证的临床结果评估 (COA) 了解得很少,这阻碍了临床试验的发展.
- 需要了解DM如何影响患者的日常生活和福祉.
研究的目的:
- 探索皮肤肌炎 (DM) 的患者体验,重点关注皮肤表现.
- 描述DM症状的经历及其对患者生活的影响.
- 评估现有的临床结果评估 (COA) 对于测量DM进展的适用性.
主要方法:
- 对28名患有严重活跃皮肤性皮质肌肌炎的成年患者进行了定性采访.
- 使用开放式问题和探针收集临床表现和患者体验的详细描述.
- 采访的重点是症状,对日常生活的影响,情绪,心理,认知和身体健康.
主要成果:
- 患者报告了13种不同的皮肤表现,皮疹和是普遍的 (100%).
- 皮肤干燥 (82%) 和皮肤胀 (61%) 也很常见;由于可见性,头部,脸部和手部是最麻烦的.
- 所有患者都经历了对情绪,心理,认知,身体健康和日常活动的影响 (67%影响了日常生活).
结论:
- 皮肤肌炎呈现出高度变化的表现,显著影响患者的情绪健康和日常功能.
- 患者的经验强调了需要全面的COA,以捕捉DM的多方面的影响.
- 进一步的研究应该集中在患者报告的结果上,以告知治疗策略和临床试验设计.
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