Fry Jessica T, Frader Joel E
Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Division of Neonatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
J Perinatol. 2018 Mar;38(3):226-232. doi: 10.1038/s41372-017-0040-4. Epub 2018 Jan 9.
There is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions.
We used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes.
We located 32 blogs of patients who describe maternal-fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal-fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%).
Patients openly share experiences with maternal-fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were "right". As the field of maternal-fetal surgery expands, prospective evaluation of patient decision-making is needed.
关于患者如何做出母胎手术相关决策，现有证据很少。我们研究了在线患者叙述，以深入了解孕妇及其伴侣如何考虑此类决策。
我们使用谷歌搜索字符串和目的抽样滚雪球法来查找患者博客。我们采用定性方法分析博客文章，以确定作者详细信息、医疗信息和共同主题。
我们找到了32个描述母胎手术咨询的患者博客。其中28人（88%）接受了胎儿干预。大多数人（91%）明确描述了与母胎手术团队的咨询；其中83%的人描述在正式咨询之前就做出了决定。很少有人对所做的决定表示后悔（6%）。
患者在网上公开分享母胎手术的经历。女性将她们的决定描述为在正式医疗程序之外做出的，并且绝大多数人认为这些决定是“正确的”。随着母胎手术领域的扩大，需要对患者决策进行前瞻性评估。
