对面临传染遗传疾病风险的夫妇提供基于网络的决策辅助工具的评估:一种随机对照试验
Yil Engbersen-Severijns1, Christine Elisabeth Maria de Die-Smulders2, Emilia Katharina Bijlsma3
1Department of Health Psychology, Open Universiteit, Heerlen, The Netherlands.; GROW School for Oncology and Reproduction, Maastricht University Medical Centre+, Maastricht, The Netherlands.; Department of Health Promotion/CAPHRI, Maastricht University, Maastricht, The Netherlands.
Reproductive biomedicine online
|February 20, 2026
概括
这项研究发现,决策辅助改善了夫妇准备就遗传性疾病传播做出明智决定的准备,提高了他们对这一过程的欣赏. 援助和标准信息都减少了冲突,增强了知识.
科学领域:
- 医学遗传学 医学遗传学
- 决策科学 决策科学 决策科学
- 卫生传播健康传播
背景情况:
- 面临传染遗传疾病风险的夫妇面临着复杂的决策.
- 有信息的决策对于遗传条件下的生殖选择至关重要.
- 现有的信息工具可能无法充分支持这些复杂的决策.
研究的目的:
- 评估决策辅助对基因风险夫妇之间知情决策的直接和持续影响.
- 在多中心随机对照试验 (RCT) 中,将决策辅助的影响与标准化信息页进行比较.
主要方法:
- 一个多中心随机对照试验 (RCT),涉及干预组的98名参与者和对照组的106名参与者.
- 干预组使用了决策辅助工具;控制组使用了标准化信息页面.
- 包括决策冲突,知识,期望和审议在内的结果在基线,干预后立即,并在1个月和6个月后被测量.
主要成果:
- 决策辅助显著改善了决策准备和使用后立即整体评价 (T1).
- 无论是决策辅助工具还是标准化信息,都减少了决策冲突,并在所有时间点增加了知识和现实的期望.
- 对照组的审议随着时间的推移显著改善,但对干预组的审议仅在稍后的时间点 (T2,T3) 进行.
结论:
- 这种决策辅助工具优于标准化信息,可以提高基因风险夫妇的决策准备和理解.
- 需要进一步的研究,以根据个人需求量身定制信息工具,并在不同决策阶段确定最佳信息传递.
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