世界血友病联合会发展共享决策工具
Donna Coffin1, Mark W Skinner2,3, Courtney D Thornburg4
1The World Federation of Hemophilia, Montreal, Quebec, Canada.
概括
世界血友病联合会开发了一种教育工具,以帮助血友病患者及其护理团队共享决策 (SDM). 该工具增强了对预防性治疗的理解,并支持个性化治疗选择.
科学领域:
- 血液学 血液学 血液学
- 医学教育 医学教育
- 患者倡导 患者倡导
背景情况:
- 共享决策 (SDM) 在临床实践中越来越重要.
- 血友病管理的复杂性需要加强患者和医疗保健提供者之间的SDM.
- SDM工具可以为患者和临床医生提供有效的教育资源.
研究的目的:
- 为血友病患者 (PWH) 和他们的护理人员开发一个教育工具.
- 为了教育PWH可用的预防性治疗方法.
- 促进PWH及其医疗保健团队之间关于治疗选择的知情讨论.
主要方法:
- 包括PWH和医疗保健从业人员在内的专家工作组开发了该工具.
- 该工具通过会议圆桌研讨会进行了改进.
- 用焦点小组来评估该工具的有效性和可用性.
主要成果:
- 世界血友病联合会 (WFH) 的共享决策 (SDM) 工具为治疗旅程指导提供了一个交互式平台.
- 功能包括对疾病影响的反思,治疗偏好,教育资源 (事实表,视频) 和治疗类比较.
- 该工具以在线和可打印的格式提供,基于证据,并将每两年更新一次.
结论:
- 世界血液基金的SDM工具是一个开创性的资源,将SDM指导转化为血友病护理的实用格式.
- 它赋予PWH及其护理人员参与以患者为中心的治疗决策的权力.
- 该工具解决了对血友病管理的可访问,用户友好的教育材料的需求.
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