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

Kelly Reumkens,Joyce J G Gietel-Habets,Jan C Oosterwijk,Vivianne C G Tjan-Heijnen,Christi J Van Asperen,Liesbeth A D M Van Osch,Christine E M De Die-Smulders,Charlotte J Dommering,Margreet G E M Ausems,Margriet Collée,Marly H E Tummers,Yil Severijns,Lizet E Van Der Kolk,Sander M J Van Kuijk,Trudy Van Der Weijden,Cora M Aalfs,Marleen Kets

doi:10.1007/s12687-020-00484-2

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.

Highlights

IntroductionDecisional support strategies (e.g., use of decision aids) are designed to help patients in making specific and deliberative choices regarding their health(care) and can be effective in promoting informed and shared decision-making (ISDM) (O’Connor and Jacobsen 2003; Juraskova et al 2014; Stacey et al 2017)
Decisional support strategies are designed to help patients in making specific and deliberative choices regarding their health(care) and can be effective in promoting informed and shared decision-making (ISDM) (O’Connor and Jacobsen 2003; Juraskova et al 2014; Stacey et al 2017)
Patient decision aids are useful to support patients in decision-making regarding choices that are preference-sensitive and value-laden. These characteristics are exemplary for reproductive decision-making among persons with an autosomal dominant predisposition for hereditary cancer and their partners, as they are faced with a 50% risk of transmitting the pathogenic variant in one of the cancer genes to their offspring

Summary

Introduction

Decisional support strategies (e.g., use of decision aids) are designed to help patients in making specific and deliberative choices regarding their health(care) and can be effective in promoting informed and shared decision-making (ISDM) (O’Connor and Jacobsen 2003; Juraskova et al 2014; Stacey et al 2017). Patient decision aids are useful to support patients in decision-making regarding choices that are preference-sensitive and value-laden. These characteristics are exemplary for reproductive decision-making among persons with an autosomal dominant predisposition for hereditary cancer and their partners, as they are faced with a 50% risk of transmitting the pathogenic variant in one of the cancer genes to their offspring. Three reproductive options are available for couples who strive for a child that is genetically related to both partners: (1) natural conception without genetic testing, implying acceptance of the risk of passing on the pathogenic variant to offspring; (2) prenatal diagnosis (PND), with the possibility to terminate the pregnancy if the fetus is affected by the pathogenic variant; and (3) preimplantation genetic testing (PGT), offering couples the option to obtain embryos by in vitro fertilization (IVF) and test them for the familial pathogenic variant. Most couples of reproductive age receive information on the PGT and PND procedures (PGD Nederland 2018)

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Conclusion