TY - JOUR
T1 - The effects of an online decision aid to support the reproductive decision-making process of genetically at risk couples-A pilot study
AU - Severijns, Yil
AU - Heijmans, Maartje W F
AU - de Die-Smulders, Christine E M
AU - Bijlsma, Emilia K
AU - Corsten-Janssen, Nicole
AU - Joosten, Sara J R
AU - van Kuijk, Sander M J
AU - Lichtenbelt, Klaske D
AU - Ottenheim, Cecile P E
AU - Stuurman, Kyra E
AU - Tan-Sindhunata, Gita M B
AU - de Vries, Hein
AU - van Osch, Liesbeth A D M
N1 - Funding Information:
This study is funded by The Netherlands Organisation for Health Research and Development (ZonMw) Grant number 543003106.
Publisher Copyright:
© 2022 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.
PY - 2023/2
Y1 - 2023/2
N2 - 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.
AB - 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.
KW - (joint informed) decision-making
KW - decision aid
KW - decisional conflict
KW - genetic counseling
KW - preimplantation genetic testing (PGT)
KW - reproductive genetics
UR - http://www.scopus.com/inward/record.url?scp=85137318431&partnerID=8YFLogxK
U2 - 10.1002/jgc4.1631
DO - 10.1002/jgc4.1631
M3 - Article
C2 - 36056622
SN - 1059-7700
VL - 32
SP - 153
EP - 165
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 1
ER -