Dane Aimée C, Peterson Madelyn, Miller Yvette D
School of Natural Sciences, Griffith University, Brisbane, QLD, 4069, Australia.
Queensland Centre for Mothers & Babies, Building 96, The University of Queensland, Hood Street, St Lucia, QLD, 4072, Australia.
J Genet Couns. 2018 Sep;27(5):1258-1264. doi: 10.1007/s10897-018-0250-8. Epub 2018 Mar 17.
Adequate knowledge is a vital component of informed decision-making; however, we do not know what information women value when making decisions about noninvasive prenatal testing (NIPT). The current study aimed to identify women's information needs for decision-making about NIPT as a first-tier, non-contingent test with out-of-pocket expense and, in turn, inform best practice by specifying the information that should be prioritized when providing pre-test counseling to women in a time-limited scenario or space-limited decision support tool. We asked women (N = 242) in Australia to indicate the importance of knowing 24 information items when making a decision about NIPT and to choose two information items they would most value. Our findings suggest that women value having complete information when making decisions about NIPT. Information about the accuracy of NIPT and the pros and cons of NIPT compared to other screening and invasive tests were perceived to be most important. The findings of this study can be used to maximize the usefulness of time-limited discussions or space-limited decision support tools, but should not be routinely relied upon as a replacement for provision of full and tailored information when feasible.
充分的知识是明智决策的重要组成部分；然而，我们并不清楚女性在做出关于无创产前检测（NIPT）的决策时看重哪些信息。当前的研究旨在确定女性在将NIPT作为一项自费的、非偶然性的一级检测进行决策时的信息需求，进而通过明确在时间有限的场景或空间有限的决策支持工具中向女性提供检测前咨询时应优先考虑的信息，为最佳实践提供参考。我们让澳大利亚的女性（N = 242）指出在做出关于NIPT的决策时了解24项信息的重要性，并选择她们最看重的两项信息。我们的研究结果表明，女性在做出关于NIPT的决策时重视获得完整的信息。与其他筛查和侵入性检测相比，NIPT的准确性以及NIPT的优缺点方面的信息被认为是最重要的。本研究的结果可用于最大限度地提高时间有限的讨论或空间有限的决策支持工具的效用，但在可行的情况下，不应常规地依赖这些结果来替代提供全面且量身定制的信息。
