多学科家长辅导和医疗干预的结构化框架,用于胎儿和婴儿的三体化13或三体化18或三体化
Amanda J H Kim1, Mayme Marshall1, Ladawna Gievers1
1Department of Pediatrics, Oregon Health and Science University, Portland, Oregon.
American journal of perinatology
|August 24, 2023
概括
三胞胎瘤13 (T13) 和三胞胎瘤18 (T18) 的诊断可能有不同的结果. 这项研究为面对这些情况的家庭提供了标准化,以患者为中心的咨询和干预决策的新框架.
科学领域:
- 遗传学 遗传学 是一个
- 儿科 儿科 儿科
- 医学伦理 医学伦理
背景情况:
- 三胞胎体13 (T13) 和三胞胎体18 (T18) 是一种与严重的先天性异常和高死亡率相关的形状.
- 从历史上看,管理层一直倾向于舒适的护理,但手术干预在没有明确的选择标准的情况下正在增加.
- 现型变异性和生存时间在受影响的个体之间有很大的差异.
研究的目的:
- 开发一种标准化的方法,用于辅导有T13/T18的新生儿的未来父母和家庭.
- 根据个性化的患者评估,为包括手术在内的干预提供一致的指导.
- 建立以患者为中心的合作决策框架.
主要方法:
- 成立一个多学科和跨学科的委员会.
- 审查现有文献和利用专家意见.
- 开发一种以伦理框架和个性化风险/益处评估为中心的护理方法.
主要成果:
- 成功创建了一个以患者为中心的框架,用于为T13/T18诊断的家庭提供咨询.
- 该指南促进了个性化评估,以估计重症监护和手术的死亡风险和潜在益处.
- 这种方法促进了协作和一致的咨询.
结论:
- 一种标准化,以患者为中心的T13/T18咨询方法已经开发出来.
- 这一框架可以作为其他机构寻求标准化对这些疾病的护理的典范.
- 个人评估是指导T13/T18案件干预决策的关键.
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