The effects of an online decision aid to support the reproductive decision-making process of genetically at risk couples-A pilot study

被引：3

作者：

Severijns, Yil ^{[1
,2
]}

Heijmans, Maartje W. F. ^{[1
]}

de Die-Smulders, Christine E. M. ^{[2
,3
]}

Bijlsma, Emilia K. ^{[4
]}

Corsten-Janssen, Nicole ^{[5
]}

Joosten, Sara J. R. ^{[6
]}

van Kuijk, Sander M. J. ^{[7
]}

Lichtenbelt, Klaske D. ^{[8
]}

Ottenheim, Cecile P. E. ^{[9
]}

Stuurman, Kyra E. ^{[10
]}

Tan-Sindhunata, Gita M. B. ^{[9
]}

de Vries, Hein ^{[1
]}

van Osch, Liesbeth A. D. M. ^{[1
,3
]}

机构：

[1] Maastricht Univ, Dept Hlth Promot CAPHRI, Maastricht, Netherlands

[2] Maastricht Univ, GROW Sch Oncol & Reprod, Med Ctr, Maastricht, Netherlands

[3] Maastricht Univ, Med Ctr, Dept Clin Genet, Maastricht, Netherlands

[4] Leiden Univ, Med Ctr, Dept Clin Genet, Leiden, Netherlands

[5] Univ Groningen, Univ Med Ctr Groningen Groningen, Dept Genet, Groningen, Netherlands

[6] Radboudumc Nijmegen, Dept Clin Genet, Nijmegen, Netherlands

[7] Maastricht Univ, Med Ctr, Dept Clin Epidemiol & Med Technol Assessment, Maastricht, Netherlands

[8] Utrecht Univ Med Ctr, Dept Genet, Utrecht, Netherlands

[9] Amsterdam UMC, Dept Human Genet, Amsterdam, Netherlands

[10] Erasmus MC, Univ Med Ctr Rotterdam, Dept Clin Genet, Rotterdam, Netherlands

来源：

JOURNAL OF GENETIC COUNSELING | 2023年 / 32卷 / 01期

关键词：

(joint informed) decision-making; decision aid; decisional conflict; genetic counseling; preimplantation genetic testing (PGT); reproductive genetics; HEREDITARY BREAST; PREGNANT-WOMEN; DIAGNOSIS; INFORMATION; VALIDATION; PARTNERS; OPTIONS; CANCER;

D O I：

10.1002/jgc4.1631

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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.

引用

页码：153 / 165

页数：13

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