Ormond K E, Banuvar S, Daly A, Iris M, Minogue J, Elias S
Department of Medicine, Center for Genetic Medicine, and Medical Humanities and Bioethics, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
Patient Educ Couns. 2009 May;75(2):244-50. doi: 10.1016/j.pec.2008.09.020. Epub 2008 Nov 14.
With the increasing carrier screening options being offered to pregnant women, it is critical to consider what information women want in an informed consent process, and how they make decisions regarding screening.
We surveyed 201 pregnant women.
Subjects prefer "to have as much information as possible" (84%), and valued their physician's recommendations (82%) regarding screening. After reviewing two hypothetical scenarios, 71% of participants preferred more information about genetic carrier screening; however, some participants expressed concern that too much information can also lead to anxiety. When specifically asked about components of a potential informed consent process, the highest preferences were to include: the chance of having a child with the disorder (97%), the options for carriers (93%), the value and purpose of testing (91%), and the prognosis if a child has the disease (94%); preference for "symptoms" information differed based on scenario preference (p<0.001).
This study is the first to document variation in patients' views regarding the information desired as part of the informed consent process.
Providers should consider ways to ascertain their patients' preferred informational style, and how to provide information in the amount and style that patients find useful in making decisions.
随着为孕妇提供的携带者筛查选项不断增加，在知情同意过程中考虑女性想要哪些信息以及她们如何做出筛查决策至关重要。
我们对201名孕妇进行了调查。
受试者更喜欢“尽可能多地获取信息”（84%），并重视医生关于筛查的建议（82%）。在查看两个假设情景后，71%的参与者更喜欢获取更多关于基因携带者筛查的信息；然而，一些参与者担心过多信息也会导致焦虑。当被具体问及潜在知情同意过程的组成部分时，最高的偏好包括：生育患有该疾病孩子的几率（97%）、携带者的选择（93%）、检测的价值和目的（91%）以及孩子患病后的预后（94%）；对“症状”信息的偏好因情景偏好而异（p<0.001）。
本研究首次记录了患者在作为知情同意过程一部分所需信息方面的观点差异。
医疗服务提供者应考虑如何确定患者偏好的信息风格，以及如何以患者认为对决策有用的数量和风格提供信息。
