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

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 tr...

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Autores principales: Severijns, Yil, Heijmans, Maartje W. F., de Die‐Smulders, Christine E. M., Bijlsma, Emilia K., Corsten‐Janssen, Nicole, Joosten, Sara J. R., van Kuijk, Sander M. J., Lichtenbelt, Klaske D., Ottenheim, Cecile P. E., Stuurman, Kyra E., Tan‐Sindhunata, Gita M. B., de Vries, Hein, van Osch, Liesbeth A. D. M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087273/
https://www.ncbi.nlm.nih.gov/pubmed/36056622
http://dx.doi.org/10.1002/jgc4.1631
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author Severijns, Yil
Heijmans, Maartje W. F.
de Die‐Smulders, Christine E. M.
Bijlsma, Emilia K.
Corsten‐Janssen, Nicole
Joosten, Sara J. R.
van Kuijk, Sander M. J.
Lichtenbelt, Klaske D.
Ottenheim, Cecile P. E.
Stuurman, Kyra E.
Tan‐Sindhunata, Gita M. B.
de Vries, Hein
van Osch, Liesbeth A. D. M.
author_facet Severijns, Yil
Heijmans, Maartje W. F.
de Die‐Smulders, Christine E. M.
Bijlsma, Emilia K.
Corsten‐Janssen, Nicole
Joosten, Sara J. R.
van Kuijk, Sander M. J.
Lichtenbelt, Klaske D.
Ottenheim, Cecile P. E.
Stuurman, Kyra E.
Tan‐Sindhunata, Gita M. B.
de Vries, Hein
van Osch, Liesbeth A. D. M.
author_sort Severijns, Yil
collection PubMed
description 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.
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spelling pubmed-100872732023-04-12 The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study Severijns, Yil Heijmans, Maartje W. F. de Die‐Smulders, Christine E. M. Bijlsma, Emilia K. Corsten‐Janssen, Nicole Joosten, Sara J. R. van Kuijk, Sander M. J. Lichtenbelt, Klaske D. Ottenheim, Cecile P. E. Stuurman, Kyra E. Tan‐Sindhunata, Gita M. B. de Vries, Hein van Osch, Liesbeth A. D. M. J Genet Couns Original Articles 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. John Wiley and Sons Inc. 2022-09-03 2023-02 /pmc/articles/PMC10087273/ /pubmed/36056622 http://dx.doi.org/10.1002/jgc4.1631 Text en © 2022 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Original Articles
Severijns, Yil
Heijmans, Maartje W. F.
de Die‐Smulders, Christine E. M.
Bijlsma, Emilia K.
Corsten‐Janssen, Nicole
Joosten, Sara J. R.
van Kuijk, Sander M. J.
Lichtenbelt, Klaske D.
Ottenheim, Cecile P. E.
Stuurman, Kyra E.
Tan‐Sindhunata, Gita M. B.
de Vries, Hein
van Osch, Liesbeth A. D. M.
The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title_full The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title_fullStr The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title_full_unstemmed The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title_short The effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—A pilot study
title_sort effects of an online decision aid to support the reproductive decision‐making process of genetically at risk couples—a pilot study
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087273/
https://www.ncbi.nlm.nih.gov/pubmed/36056622
http://dx.doi.org/10.1002/jgc4.1631
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