Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making

K Reumkens; MHE Tummers; Y Severijns; JJG Gietel-Habets; SMJ van Kuijk; CM Aalfs; CJ van Asperen; MG Ausems; Margriet Collee; CJ Dommering; M Kets; LE van der Kolk; JC Oosterwijk; VC Tjan-Heijnen; T van der Weijden; CE de Die-Smulders; LADM van Osch

doi:10.1007/s12687-020-00484-2

Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making

K Reumkens, MHE Tummers, Y Severijns, JJG Gietel-Habets, SMJ van Kuijk, CM Aalfs, CJ van Asperen, MG Ausems, Margriet Collee, CJ Dommering, M Kets, LE van der Kolk, JC Oosterwijk, VC Tjan-Heijnen, T van der Weijden, CE de Die-Smulders, LADM van Osch

Clinical Genetics

Research output: Contribution to journal › Article › Academic › peer-review

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Abstract

Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy. T0–T3 comparisons show an overall positive effect for all outcome measures (all ps < 0.05; knowledge (ES = − 1.05), decisional conflict (ES = 0.99), participants’ decision self-efficacy (ES = −0.55), level of deliberation (ES = − 0.50), and realistic expectations (ES = − 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples’ daily life and wellbeing.

Original language	English
Pages (from-to)	101-110
Number of pages	10
Journal	Journal of Community Genetics
Volume	12
Issue number	1
DOIs	https://doi.org/10.1007/s12687-020-00484-2
Publication status	Published - 2021

Bibliographical note

Funding Information:
Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (Alpe d’HuZes; grant number UM2013-6374). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. The funding source had no role in the study. Code availability

Publisher Copyright:
© 2020, The Author(s).

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EMC OR-01

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This output contributes to the following UN Sustainable Development Goals (SDGs)

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Cite this

Reumkens, K., Tummers, MHE., Severijns, Y., Gietel-Habets, JJG., van Kuijk, SMJ., Aalfs, CM., van Asperen, CJ., Ausems, MG., Collee, M., Dommering, CJ., Kets, M., van der Kolk, LE., Oosterwijk, JC., Tjan-Heijnen, VC., van der Weijden, T., de Die-Smulders, CE., & van Osch, LADM. (2021). Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making. Journal of Community Genetics, 12(1), 101-110. https://doi.org/10.1007/s12687-020-00484-2

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title = "Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making",

abstract = "Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy. T0–T3 comparisons show an overall positive effect for all outcome measures (all ps < 0.05; knowledge (ES = − 1.05), decisional conflict (ES = 0.99), participants{\textquoteright} decision self-efficacy (ES = −0.55), level of deliberation (ES = − 0.50), and realistic expectations (ES = − 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples{\textquoteright} daily life and wellbeing.",

author = "K Reumkens and MHE Tummers and Y Severijns and JJG Gietel-Habets and {van Kuijk}, SMJ and CM Aalfs and {van Asperen}, CJ and MG Ausems and Margriet Collee and CJ Dommering and M Kets and {van der Kolk}, LE and JC Oosterwijk and VC Tjan-Heijnen and {van der Weijden}, T and {de Die-Smulders}, CE and {van Osch}, LADM",

note = "Funding Information: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (Alpe d{\textquoteright}HuZes; grant number UM2013-6374). The funding agreement ensured the authors{\textquoteright} independence in designing the study, interpreting the data, writing, and publishing the report. The funding source had no role in the study. Code availability Publisher Copyright: {\textcopyright} 2020, The Author(s).",

year = "2021",

doi = "10.1007/s12687-020-00484-2",

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pages = "101--110",

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Reumkens, K, Tummers, MHE, Severijns, Y, Gietel-Habets, JJG, van Kuijk, SMJ, Aalfs, CM, van Asperen, CJ, Ausems, MG, Collee, M, Dommering, CJ, Kets, M, van der Kolk, LE, Oosterwijk, JC, Tjan-Heijnen, VC, van der Weijden, T, de Die-Smulders, CE & van Osch, LADM 2021, 'Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making', Journal of Community Genetics, vol. 12, no. 1, pp. 101-110. https://doi.org/10.1007/s12687-020-00484-2

TY - JOUR

T1 - Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making

AU - Reumkens, K

AU - Tummers, MHE

AU - Severijns, Y

AU - Gietel-Habets, JJG

AU - van Kuijk, SMJ

AU - Aalfs, CM

AU - van Asperen, CJ

AU - Ausems, MG

AU - Collee, Margriet

AU - Dommering, CJ

AU - Kets, M

AU - van der Kolk, LE

AU - Oosterwijk, JC

AU - Tjan-Heijnen, VC

AU - van der Weijden, T

AU - de Die-Smulders, CE

AU - van Osch, LADM

N1 - Funding Information: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (Alpe d’HuZes; grant number UM2013-6374). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. The funding source had no role in the study. Code availability Publisher Copyright: © 2020, The Author(s).

PY - 2021

Y1 - 2021

N2 - Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy. T0–T3 comparisons show an overall positive effect for all outcome measures (all ps < 0.05; knowledge (ES = − 1.05), decisional conflict (ES = 0.99), participants’ decision self-efficacy (ES = −0.55), level of deliberation (ES = − 0.50), and realistic expectations (ES = − 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples’ daily life and wellbeing.

AB - Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy. T0–T3 comparisons show an overall positive effect for all outcome measures (all ps < 0.05; knowledge (ES = − 1.05), decisional conflict (ES = 0.99), participants’ decision self-efficacy (ES = −0.55), level of deliberation (ES = − 0.50), and realistic expectations (ES = − 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples’ daily life and wellbeing.

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DO - 10.1007/s12687-020-00484-2

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Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making

Abstract

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