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对于退行性宫肌病的共享决策:混合方法研究协议.

Irina Sangeorzan1, Grazia Antonacci2,3, Anne Martin4

  • 1Myelopathy.org, Cambridge, United Kingdom.

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|October 9, 2023
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概括

本研究协议概述了核心信息集 (CIS) 和流程图的开发,以加强对退行性宫肌病 (DCM) 的共享决策 (SDM). 这些工具旨在提高患者的知识,并支持在管理这种慢性脊髓疾病时做出明智的选择.

关键词:
在RECODE-DCM中使用.退行性宫肌病的研究目标和共同数据元素衰老的衰老 衰老的衰老慢性 慢性 慢性 慢性一个常见的数据元素.核心信息集是一个核心信息集.在决策过程中做出决定.退行性宫骨髓病变 退行性宫骨髓病变老年人的医疗服务患者教育 患者教育患者参与 患者参与过程映射的过程映射.分享决策的决策.脊髓是指脊髓的部分.脊柱 脊柱 脊柱 脊柱 脊柱

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科学领域:

  • 神经科学是一个神经科学.
  • 临床医学 临床医学
  • 医疗保健服务研究 医疗服务研究

背景情况:

  • 退行性宫髓病 (DCM) 是一种慢性,非创伤性脊髓损伤,呈现异质,管理复杂.
  • 共享决策 (SDM) 对于以患者为中心的慢性疾病护理至关重要,将治疗与个体患者的价值观和偏好保持一致.
  • 目前患者知识和决策点理解的差距阻碍了DCM护理中的有效SDM.

研究的目的:

  • 为诊断为DCM的患者开发一个全面的核心信息集 (CIS),以支持知情决策.
  • 创建一个详细的过程地图,说明DCM护理工作流程,并确定加强以患者为中心的护理的关键决策点.
  • 为在退行性宫肌病的常规临床实践中实施SDM工具奠定基础.

主要方法:

  • 与关键利益相关者参与的CIS和流程地图的代联合制作,由Myelopathy.org.org提供便利.
  • 一个基于Web的3轮Delphi流程,使用从范围审查,患者访谈和专业调查的基线列表来开发CIS.
  • 与患者和专业人员进行半结构化采访,然后对利益相关者进行验证,以开发过程地图.

主要成果:

  • 德尔菲共识研究的招聘于2023年4月开始.
  • 过程图面试的试点测试同时开始,初步基线图的制定正在进行中.
  • 该研究协议代表了为DCM开发SDM工具的初始阶段.

结论:

  • 本协议启动了对退行性宫骨髓病 (DCM) 中SDM的调查.
  • 主要重点是创建一个教育工具 (CIS),以帮助诊断和随后的决策.
  • 更广泛的目标是确定DCM护理中的关键决策结点,以促进DCM社区开发SDM工具.