Department of Health Promotion/CAPHRI, Maastricht University, Maastricht, The Netherlands.
GROW School for Oncology & Reproduction, Maastricht University Medical Centre+, Maastricht, The Netherlands.
J Genet Couns. 2023 Feb;32(1):153-165. doi: 10.1002/jgc4.1631. Epub 2022 Sep 3.
Couples at risk of transmitting a genetic disease to their offspring may experience doubts about their reproductive options. This study examines the effects of an online decision aid (DA) on the (joint) reproductive decision-making process of couples (not pregnant at time of inclusion) at risk of transmitting a genetic disease to their offspring. The primary outcome is decisional conflict, and secondary outcomes are knowledge, realistic expectations, deliberation, joint informed decision-making, and decisional self-efficacy. These outcomes were measured with a pretest-posttest design: before use (T0), after use (T1), and 2 weeks after use (T2) of the decision aid (DA). Usability of the DA was assessed at T1. Paired sample t-tests were used to compute differences between baseline and subsequent measurements. The comparisons of T0-T1 and T0-T2 indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict scores. Furthermore, use of the DA led to increased knowledge, improved realistic expectations, and increased levels of deliberation, with higher increase in participants with low baseline scores. Decision self-efficacy only improved for participants with lower baseline scores. Participants indicated that the information in the DA was comprehensible and clearly organized. These first results indicate that this online DA is an appropriate tool to support couples at risk of transmitting a genetic disease and a desire to have (a) child(ren) in their reproductive decision-making process.
有遗传疾病风险的夫妇在决定其生殖选项时可能会感到困惑。本研究探讨了在线决策辅助工具（DA）对有遗传疾病风险的夫妇（在纳入时未怀孕）的生殖决策过程的影响。主要结局是决策冲突，次要结局是知识、现实期望、审议、共同知情决策和决策自我效能。这些结局通过预测试后设计进行测量：使用前（T0）、使用后（T1）和使用后 2 周（T2）使用决策辅助工具（DA）。在 T1 时评估了 DA 的可用性。采用配对样本 t 检验计算基线和后续测量之间的差异。T0-T1 和 T0-T2 的比较表明，决策冲突评分的均值显著降低，高基线决策冲突评分的参与者效果更强。此外，DA 的使用导致知识增加，现实期望改善，审议水平提高，基线分数较低的参与者增加幅度更大。决策自我效能仅对基线分数较低的参与者有所提高。参与者表示，DA 中的信息易于理解且组织清晰。这些初步结果表明，这种在线 DA 是支持有遗传疾病风险且希望在生殖决策过程中拥有（一个）孩子的夫妇的合适工具。
