Online decision support for persons having a genetic predisposition to cancer and their partners during reproductive decision-making
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.
(2019) Journal of Genetic Counseling, volume 28, issue 3, pp. 533 - 542
(Article)
Abstract
A nationwide pretest–posttest study was conducted in all clinical genetic centres in the Netherlands, to evaluate the effects of an online decision aid to support persons who have a genetic predisposition to cancer and their partners in making an informed decision regarding reproductive options. Main outcomes (decisional conflict, knowledge, realistic
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expectations, level of deliberation, and decision self-efficacy) were measured before use (T0), immediately after use (T1), and at 2 weeks (T2) after use of the decision aid. Paired sample t tests were used to compute differences between the first and subsequent measurements. T0–T1 and T0–T2 comparisons indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict. Furthermore, use of the decision aid resulted in increased knowledge levels and improved realistic expectations. Level of deliberation only increased for participants with lower baseline levels of deliberation. Decision self-efficacy increased for those with low baseline scores, whereas those with high baseline scores showed a reduction at T2. It can be concluded that use of the decision aid resulted in several positive outcomes indicative of informed decision-making. The decision aid is an appropriate and highly appreciated tool to be used in addition to reproductive counseling.
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Keywords: counseling, decision aid, genetics, hereditary cancer, informed decision-making, oncology, patient participation, reproductive decision-making, Genetics(clinical), Journal Article
ISSN: 1059-7700
Publisher: Kluwer Academic/Human Sciences Press Inc.
Note: Funding Information: I confirm that the work was conducted to fulfill a degree requirement or as part of training. Funding information The work in this study was conducted to fulfill a degree requirement and was funded by the Dutch Cancer Society (Alpe d'HuZes; grant number UM2013-6374). Funding Information: The work in this study was conducted to fulfill a degree requirement and was funded by the Dutch Cancer Society (Alpe d'HuZes; grant number UM2013‐6374). Publisher Copyright: © 2018 The Authors Journal of Genetic Counseling published by Wiley Periodicals, Inc. on behalf of National Society of Genetic Counselors
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