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在儿科移植中以患者为中心的研究:让家庭和接受者参与

Emily R Perito¹, Melissa McQueen², Jennifer Lau³

¹Department of Pediatrics, Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, California, USA.

American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons

|February 7, 2024

概括

这项研究与儿科肝移植 (LT) 提供者和家庭合作,制定以患者为中心的结果研究 (PCOR) 优先事项. 他们的协作方法创建了一个PCOR路线图,以指导儿科LT接受者的未来研究.

科学领域:

儿科移植研究的研究.
患者为中心的结果研究 (PCOR)
卫生系统研究卫生系统研究

背景情况:

儿科肝移植 (LT) 接受者面临着终身健康管理的挑战.
从历史上看,儿科LT的研究优先事项主要由医疗保健提供者决定.
需要将患者和家庭的观点纳入研究议程.

研究的目的:

在儿科肝移植 (LT) 中建立以患者为中心的结果研究 (PCOR) 的合作框架.
通过与患者家属和提供者合作,开发儿科LT的研究重点和过程.
为儿科LT的利益相关者创建PCOR的教育模块.

主要方法:

开发了5个虚拟模块,以教育参与者PCOR,并收集研究想法.
在两年时间里,在16个中心参与了240名患者合作伙伴和133名儿科LT提供者.
进行了20个重点小组,包括针对代表性不足的群体 (年轻人,西班牙语,非洲裔美国人) 的有针对性的会议.

主要成果:

成功地将利益相关者的反合成了一个全面的PCOR路线图Starzl网络.
通过在线平台和网络研讨会传播发现和PCOR路线图.
确定了与儿科LT社区相关的关键PCOR优先事项和流程.

结论:

一个学习健康系统和一个家长倡导小组之间的新型伙伴关系有效地促进了儿科LT的协作PCOR.
开发的参与策略可以被其他移植社区适应,以加强患者-提供者研究伙伴关系.
这种方法确保研究重点与儿科LT接受者及其家人的需求和经验保持一致.

关键词:

肝移植肝移植肝移植患者为中心的研究成果研究结果.儿科移植移植儿科移植

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