关于性别发展差异的共同外科决策的决策援助开发:对现有援助的审查
Aalaa S Abdallah1, Adam Davies2, Emma Trasatti2
1Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Sex Development Clinic, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Journal of pediatric urology
|April 26, 2025
概括
决策辅助工具 (DA) 帮助家庭为性别发育差异 (DSD) 的儿童做出明智的手术选择. 本研究为开发有效的DA提供了框架,以支持共享决策 (SDM).
科学领域:
- 儿科手术 儿科手术
- 遗传学和基因组学 遗传学和基因组学
- 医学伦理 医学伦理
背景情况:
- 对于性别发育差异 (DSD) 的儿童来说,考虑进行手术干预,以控制瘤风险或尿路困难.
- 在DSD护理中,共享决策 (SDM) 为患者,家庭和临床医生带来了挑战.
- 决策辅助工具 (DA) 可以在儿科DSD病例中促进知情的SDM.
研究的目的:
- 审查有关DSD儿童手术SDM的DA的文献.
- 提出一个框架,以利益相关方的参与,创建和实施DA.
主要方法:
- 使用PubMed.Med进行了叙事文献审查.
- 该审查为框架开发过程提供了信息,其中包括基于社区的参与性研究原则.
主要成果:
- 审查中包括了六篇出版物.
- 有效的DA功能:过程概述,家庭价值观,命名,讨论主题,提供者问题和管理选项.
- 为DA发展创建了一个框架.
结论:
- 一个以社区为基础的参与式研究框架有助于在DSD中开发外科SDM的DA.
- 这些DA授权临床医生确保患者和家人得到充分的信息.
- 需要进一步研究DA的实施和有效性.
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