Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial

Yil Engbersen-Severijns; Christine Elisabeth Maria De Die-Smulders; Emilia Katharina Bijlsma; Nicole Corsten-Janssen; Elisa Josephine Francisca Houwink; Sara Johanna Regina Joosten; Sander Martijn Job Van Kuijk; Klazina Danette Lichtenbelt; Cecilia Petra Elisabeth Ottenheim; Hubertina Catharina Johanna Scheepers; Kyra Eva Stuurman; Maria Brigita Tan-Sindhunata; Elsbeth Hennie Van Vliet-Lachotzki; Hein de Vries; Gertruda Dorothea Emma Maria Van Der Weijden; Liesbeth Anne Dorothe Marie Van Osch

doi:10.1016/j.rbmo.2025.105273

Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial

Yil Engbersen-Severijns^*
, Christine Elisabeth Maria De Die-Smulders
, Emilia Katharina Bijlsma
, Nicole Corsten-Janssen
, Elisa Josephine Francisca Houwink
, Sara Johanna Regina Joosten
, Sander Martijn Job Van Kuijk
, Klazina Danette Lichtenbelt
, Cecilia Petra Elisabeth Ottenheim
, Hubertina Catharina Johanna Scheepers
, Kyra Eva Stuurman
, Maria Brigita Tan-Sindhunata
, Elsbeth Hennie Van Vliet-Lachotzki
, Hein de Vries
, Gertruda Dorothea Emma Maria Van Der Weijden
, Liesbeth Anne Dorothe Marie Van Osch

^*Corresponding author for this work

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

Abstract

RESEARCH QUESTION: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)?

DESIGN: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information.

RESULTS: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1-T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3.

CONCLUSION: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.

Original language	English
Article number	105273
Number of pages	11
Journal	Reproductive Biomedicine Online
Volume	52
Issue number	4
DOIs	https://doi.org/10.1016/j.rbmo.2025.105273
Publication status	Published - Apr 2026

Keywords

Decision aid
Decision support
Genetic disease
Randomized controlled trial
Reproductive decision-making

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Engbersen-Severijns, Y., De Die-Smulders, C. E. M., Bijlsma, E. K., Corsten-Janssen, N., Houwink, E. J. F., Joosten, S. J. R., Van Kuijk, S. M. J., Lichtenbelt, K. D., Ottenheim, C. P. E., Scheepers, H. C. J., Stuurman, K. E., Tan-Sindhunata, M. B., Van Vliet-Lachotzki, E. H., Vries, H. D., Van Der Weijden, G. D. E. M., & Van Osch, L. A. D. M. (2026). Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial. Reproductive Biomedicine Online, 52(4), Article 105273. https://doi.org/10.1016/j.rbmo.2025.105273

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title = "Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial",

abstract = "RESEARCH QUESTION: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)?DESIGN: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information.RESULTS: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1-T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3.CONCLUSION: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.",

keywords = "Decision aid, Decision support, Genetic disease, Randomized controlled trial, Reproductive decision-making",

author = "Yil Engbersen-Severijns and \{De Die-Smulders\}, \{Christine Elisabeth Maria\} and Bijlsma, \{Emilia Katharina\} and Nicole Corsten-Janssen and Houwink, \{Elisa Josephine Francisca\} and Joosten, \{Sara Johanna Regina\} and \{Van Kuijk\}, \{Sander Martijn Job\} and Lichtenbelt, \{Klazina Danette\} and Ottenheim, \{Cecilia Petra Elisabeth\} and Scheepers, \{Hubertina Catharina Johanna\} and Stuurman, \{Kyra Eva\} and Tan-Sindhunata, \{Maria Brigita\} and \{Van Vliet-Lachotzki\}, \{Elsbeth Hennie\} and Vries, \{Hein de\} and \{Van Der Weijden\}, \{Gertruda Dorothea Emma Maria\} and \{Van Osch\}, \{Liesbeth Anne Dorothe Marie\}",

year = "2026",

month = apr,

doi = "10.1016/j.rbmo.2025.105273",

language = "English",

volume = "52",

journal = "Reproductive Biomedicine Online",

issn = "1472-6483",

publisher = "Elsevier",

number = "4",

}

Engbersen-Severijns, Y, De Die-Smulders, CEM, Bijlsma, EK, Corsten-Janssen, N, Houwink, EJF, Joosten, SJR, Van Kuijk, SMJ, Lichtenbelt, KD, Ottenheim, CPE, Scheepers, HCJ, Stuurman, KE, Tan-Sindhunata, MB, Van Vliet-Lachotzki, EH, Vries, HD, Van Der Weijden, GDEM & Van Osch, LADM 2026, 'Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial', Reproductive Biomedicine Online, vol. 52, no. 4, 105273. https://doi.org/10.1016/j.rbmo.2025.105273

Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial. / Engbersen-Severijns, Yil; De Die-Smulders, Christine Elisabeth Maria; Bijlsma, Emilia Katharina et al.
In: Reproductive Biomedicine Online, Vol. 52, No. 4, 105273, 04.2026.

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

TY - JOUR

T1 - Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease

T2 - a randomized controlled trial

AU - Engbersen-Severijns, Yil

AU - De Die-Smulders, Christine Elisabeth Maria

AU - Bijlsma, Emilia Katharina

AU - Corsten-Janssen, Nicole

AU - Houwink, Elisa Josephine Francisca

AU - Joosten, Sara Johanna Regina

AU - Van Kuijk, Sander Martijn Job

AU - Lichtenbelt, Klazina Danette

AU - Ottenheim, Cecilia Petra Elisabeth

AU - Scheepers, Hubertina Catharina Johanna

AU - Stuurman, Kyra Eva

AU - Tan-Sindhunata, Maria Brigita

AU - Van Vliet-Lachotzki, Elsbeth Hennie

AU - Vries, Hein de

AU - Van Der Weijden, Gertruda Dorothea Emma Maria

AU - Van Osch, Liesbeth Anne Dorothe Marie

PY - 2026/4

Y1 - 2026/4

N2 - RESEARCH QUESTION: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)?DESIGN: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information.RESULTS: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1-T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3.CONCLUSION: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.

AB - RESEARCH QUESTION: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)?DESIGN: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information.RESULTS: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1-T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3.CONCLUSION: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.

KW - Decision aid

KW - Decision support

KW - Genetic disease

KW - Randomized controlled trial

KW - Reproductive decision-making

U2 - 10.1016/j.rbmo.2025.105273

DO - 10.1016/j.rbmo.2025.105273

M3 - Article

C2 - 41720043

SN - 1472-6483

VL - 52

JO - Reproductive Biomedicine Online

JF - Reproductive Biomedicine Online

IS - 4

M1 - 105273

ER -

Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease: a randomized controlled trial

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Keywords

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