李症状尺度-皮肤硬化症的发展为慢性GVHD相关的硬化症
Emily Baumrin1, Joseph Pidala2, Sandra A Mitchell3
1Department of Dermatology, University of Pennsylvania, Philadelphia, PA.
Blood
|January 14, 2025
概括
研究人员开发了一种新的患者报告结果 (PRO),用于慢性移植对宿主疾病 (cGVHD) 相关的硬化症. 这种工具,李症状尺度-皮肤硬化症,捕获关键症状和功能影响,以帮助治疗试验.
科学领域:
- 医学研究 医学研究
- 患者报告的结果.
- 移植与宿主疾病的研究.
背景情况:
- 硬化症是慢性移植与宿主疾病 (cGVHD) 的严重并发症,导致严重的残疾.
- 经过验证的患者报告结果 (PRO) 措施对于推进cGVHD相关性硬化症的治疗试验至关重要.
研究的目的:
- 为患有cGVHD相关性硬化症的成年人开发和评估PRO的内容有效性.
- 确定并将以患者为中心的症状和功能影响纳入一个新的测量工具.
主要方法:
- 与cGVHD相关性硬化症的成年人 (n=36) 进行半结构面试,以引起症状和功能限制.
- 诱导性分析将症状分为以下领域:皮肤变化,一般症状,情绪/社会功能,移动性和活动限制.
- 认知汇报面试 (n=25) 改进了54个候选项目,最终形成了55个项目临时表格.
主要成果:
- 概念诱导确定了cGVHD相关硬化症患者体验的5个关键领域.
- 认知汇报导致项目反复改进,提高相关性和理解力.
- 暂时的李症状尺度-皮肤硬化症证明了相关性,可理解性和全面性.
结论:
- 李症状尺度-皮肤硬化症是通过患者采访和认知报告来开发和改进的.
- 临时的PRO适合进一步的心理测量验证.
- 目前正在进行的验证研究将确定尺度的可靠性和临床意义.
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