使用改良多维知情选择衡量工具探索孕前生殖遗传携带者筛查中的知情选择。
Exploring informed choice in preconception reproductive genetic carrier screening by using a modified Multidimensional Measure of Informed Choice.
机构信息
Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Department of Human Genetics, KU Leuven, Leuven, Belgium.
出版信息
Patient Educ Couns. 2022 Nov;105(11):3313-3318. doi: 10.1016/j.pec.2022.07.014. Epub 2022 Jul 22.
OBJECTIVES
To explore informed choice in reproductive genetic carrier screening (RGCS).
METHODS
Women visiting a gynaecologist practice in Flanders (Belgium) were asked to consider participation in a study where RGCS was offered for free to them and their male partner. A modified Multidimensional Measure of Informed Choice was used to determine whether couples who opted for RGCS made an informed choice. In addition, we assessed risk perception, feelings towards RGCS, anxiety and decisional conflict.
RESULTS
Most participants (82 %, n = 63/77) made an informed choice with regard to RGCS according to our modified MMIC. Thirteen participants made an uninformed choice due to insufficient knowledge and one participant because of insufficient knowledge and value-inconsistency. Anxiety scores were elevated for three participants. Two participants presented with decisional conflict.
CONCLUSION
Our results show high rates of informed choice among non-pregnant couples who were offered RGCS in a research study and received up to 30 min of pre-test counseling.
PRACTICE IMPLICATIONS
Limited resources outside a research context may impact informed choice. Pre-test counselling initiatives for RGCS should ideally be organized in such a way that information can be provided at multiple time points to avoid information overload and to allow for a reflection period.
目的
探讨生殖遗传携带者筛查（RGCS）中的知情选择。
方法
我们邀请访问弗拉芒（比利时）妇科医生诊所的女性参与一项研究，该研究为她们及其男性伴侣免费提供 RGCS。我们使用改良多维知情选择量表来确定选择 RGCS 的夫妇是否做出了知情选择。此外，我们评估了风险感知、对 RGCS 的感受、焦虑和决策冲突。
结果
根据我们的改良 MMIC，大多数参与者（82%，n=63/77）在 RGCS 方面做出了知情选择。由于知识不足，有 13 名参与者做出了不明智的选择，有 1 名参与者由于知识不足和价值观不一致而做出了不明智的选择。有 3 名参与者的焦虑评分升高。有 2 名参与者出现决策冲突。
结论
我们的研究结果表明，在研究环境中，为非孕妇夫妇提供 RGCS 并提供长达 30 分钟的预测试咨询时，他们做出知情选择的比例很高。
实践意义
在研究环境之外，有限的资源可能会影响知情选择。RGCS 的预测试咨询倡议理想情况下应组织在多个时间点提供信息，以避免信息过载并为反思留出时间。
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