对狼管理中的患者观点和偏好进行定性分析,以指导狼指南的制定
Shivani Garg1, Izzy Hartel1, Lisa R Sammaritano2
1University of Wisconsin School of Medicine and Public Health, Madison.
Arthritis care & research
|November 3, 2025
概括
患者优先事项指导美国风湿病学学院 (ACR) 针对系统性红斑狼 (SLE) 和狼性炎 (LN) 的新指南. 纳入患者经验可以改善治疗对齐和慢性疾病管理指南的适用性.
科学领域:
- 类风湿病学 类风湿病学
- 患者为中心的护理
- 临床实践指南 临床实践指南
背景情况:
- 慢性疾病管理,包括全身性红斑狼 (SLE),受益于以患者为中心的方法.
- 将治疗与患者的价值观和偏好结合起来,可以改善健康结果.
- 患者的经验,观点和优先事项对于制定有效的指南至关重要.
研究的目的:
- 总结患者的意见如何为美国风湿病学学院 (ACR) 提供了2024年性炎 (LN) 和2025年SLE查和治疗指南.
- 确保临床实践指南反映真实世界的患者经验和优先事项.
主要方法:
- 基于ACR LN和SLE指南的患者小组会议内容分析的定性研究.
- 患者小组代表在投票小组会议上提出了关键主题.
- 讨论将证据与患者优先事项整合在一起,以协调治疗建议.
主要成果:
- 19名患有SLE和/或LN的参与者 (90%为女性) 提供了反.
- 主题分析确定了三个领域的9个主要患者报告的主题:治疗/监测,临床沟通和透明度/信息共享.
- 这些主题被纳入ACR LN和SLE指南开发中.
结论:
- 患者的经验被整合到临床实践指南开发过程中.
- 建议与现实患者的优先事项保持一致,提高了指南的适用性.
- 这种方法加强了类风湿病学临床指南的以患者为中心性.
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