为患有初级胆管结肠炎的人制定问题提示清单:德尔菲研究
Ellen Werner1, Maria C B van Hooff1, Gemma H X Weijsters1
1Department of Gastroenterology and Hepatology, Erasmus Medical Center, Health Care Provider of the European Reference Network on Rare Liver Disorders (ERN RARE LIVER), Rotterdam, The Netherlands.
概括
一个新的问题提示列表 (QPL) 赋予初级胆管胆道炎 (PBC) 患者关于疾病管理的关键问题. 该工具旨在改善患者的治疗结果,并增强他们的医疗保健体验.
科学领域:
- 肝病学 肝病学是一种肝病学.
- 患者为中心的护理
- 开发临床指南的指导方针.
背景情况:
- 终身肝病管理往往缺乏具体的患者指导.
- 初级胆道胆炎 (PBC) 患者需要结构化的支持来自我管理.
- 现有的临床指导方针可能无法完全解决PBC中的患者特定问题.
研究的目的:
- 为原发性胆道胆炎 (PBC) 患者制定一个全面的问题提示清单 (QPL).
- 为了确定关键问题,患者应该直接咨询他们的医生,以改善健康结果.
- 增强患者对管理PBC的理解和参与.
主要方法:
- 国际PBC专业人员和患者代表参加了一项调查.
- 问题根据PBC护理的九个方面的重要性进行了评分和排名.
- 一个涉及会议和专家审查的共识过程完善了最终的QPL.
主要成果:
- 在43个初始问题中,有11个被确定为最佳候选问题 (BCQ).
- 最终的QPL包括8个基本问题,涵盖疾病进展,肝硬化风险,治疗,骨健康和支持.
- 具体问题涉及,疲劳和一线治疗选择.
结论:
- 开发的QPL是一个面向用户的工具,旨在改善患者的体验.
- 本资源旨在促进基于价值的医疗保健在PBC的常规临床实践中.
- 通过针对性问题赋予患者权力,可以更好地管理原发性胆道胆道炎.
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