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The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study

An online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making was developed. A two-phase usability test was conducted among 12 couples (N = 22; 2 persons participated without their partner) at risk for hereditary cancer and...

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Autores principales: Reumkens, Kelly, Tummers, Marly H. E., Gietel-Habets, Joyce J. G., van Kuijk, Sander M. J., Aalfs, Cora M., van Asperen, Christi J., Ausems, Margreet G. E. M., Collée, Margriet, Dommering, Charlotte J., Kets, C. Marleen, van der Kolk, Lizet E., Oosterwijk, Jan C., Tjan-Heijnen, Vivianne C. G., van der Weijden, Trudy, de Die-Smulders, Christine E. M., van Osch, Liesbeth A. D. M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Netherlands 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6323089/
https://www.ncbi.nlm.nih.gov/pubmed/29846879
http://dx.doi.org/10.1007/s10689-018-0092-4
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author Reumkens, Kelly
Tummers, Marly H. E.
Gietel-Habets, Joyce J. G.
van Kuijk, Sander M. J.
Aalfs, Cora M.
van Asperen, Christi J.
Ausems, Margreet G. E. M.
Collée, Margriet
Dommering, Charlotte J.
Kets, C. Marleen
van der Kolk, Lizet E.
Oosterwijk, Jan C.
Tjan-Heijnen, Vivianne C. G.
van der Weijden, Trudy
de Die-Smulders, Christine E. M.
van Osch, Liesbeth A. D. M.
author_facet Reumkens, Kelly
Tummers, Marly H. E.
Gietel-Habets, Joyce J. G.
van Kuijk, Sander M. J.
Aalfs, Cora M.
van Asperen, Christi J.
Ausems, Margreet G. E. M.
Collée, Margriet
Dommering, Charlotte J.
Kets, C. Marleen
van der Kolk, Lizet E.
Oosterwijk, Jan C.
Tjan-Heijnen, Vivianne C. G.
van der Weijden, Trudy
de Die-Smulders, Christine E. M.
van Osch, Liesbeth A. D. M.
author_sort Reumkens, Kelly
collection PubMed
description An online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making was developed. A two-phase usability test was conducted among 12 couples (N = 22; 2 persons participated without their partner) at risk for hereditary cancer and 15 health care providers. Couples and health care providers expressed similar suggestions for improvements, and evaluated the modified decision aid as acceptable, easy to use, and comprehensible. The final decision aid was pilot tested (N = 16) with paired sample t tests comparing main outcomes (decisional conflict, knowledge, realistic expectations regarding the reproductive options and decision self-efficacy) before (T0), immediately (T1) and 2 weeks after (T2) use of the decision aid. Pilot testing indicated decreased decisional conflict scores, increased knowledge, and improved realistic expectations regarding the reproductive options, at T1 and T2. No effect was found for couples’ decision self-efficacy. The positive findings during usability testing were thus reflected in the pilot study. The decision aid will be further evaluated in a nationwide pretest–posttest study to facilitate implementation in the onco-genetic counselling setting. Ultimately, it is expected that the decision aid will enable end-users to make an informed decision.
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spelling pubmed-63230892019-01-22 The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study Reumkens, Kelly Tummers, Marly H. E. Gietel-Habets, Joyce J. G. van Kuijk, Sander M. J. Aalfs, Cora M. van Asperen, Christi J. Ausems, Margreet G. E. M. Collée, Margriet Dommering, Charlotte J. Kets, C. Marleen van der Kolk, Lizet E. Oosterwijk, Jan C. Tjan-Heijnen, Vivianne C. G. van der Weijden, Trudy de Die-Smulders, Christine E. M. van Osch, Liesbeth A. D. M. Fam Cancer Original Article An online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making was developed. A two-phase usability test was conducted among 12 couples (N = 22; 2 persons participated without their partner) at risk for hereditary cancer and 15 health care providers. Couples and health care providers expressed similar suggestions for improvements, and evaluated the modified decision aid as acceptable, easy to use, and comprehensible. The final decision aid was pilot tested (N = 16) with paired sample t tests comparing main outcomes (decisional conflict, knowledge, realistic expectations regarding the reproductive options and decision self-efficacy) before (T0), immediately (T1) and 2 weeks after (T2) use of the decision aid. Pilot testing indicated decreased decisional conflict scores, increased knowledge, and improved realistic expectations regarding the reproductive options, at T1 and T2. No effect was found for couples’ decision self-efficacy. The positive findings during usability testing were thus reflected in the pilot study. The decision aid will be further evaluated in a nationwide pretest–posttest study to facilitate implementation in the onco-genetic counselling setting. Ultimately, it is expected that the decision aid will enable end-users to make an informed decision. Springer Netherlands 2018-05-30 2019 /pmc/articles/PMC6323089/ /pubmed/29846879 http://dx.doi.org/10.1007/s10689-018-0092-4 Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Reumkens, Kelly
Tummers, Marly H. E.
Gietel-Habets, Joyce J. G.
van Kuijk, Sander M. J.
Aalfs, Cora M.
van Asperen, Christi J.
Ausems, Margreet G. E. M.
Collée, Margriet
Dommering, Charlotte J.
Kets, C. Marleen
van der Kolk, Lizet E.
Oosterwijk, Jan C.
Tjan-Heijnen, Vivianne C. G.
van der Weijden, Trudy
de Die-Smulders, Christine E. M.
van Osch, Liesbeth A. D. M.
The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title_full The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title_fullStr The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title_full_unstemmed The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title_short The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
title_sort development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6323089/
https://www.ncbi.nlm.nih.gov/pubmed/29846879
http://dx.doi.org/10.1007/s10689-018-0092-4
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