Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed deci
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ORIGINAL ARTICLE
Reproductive decision-making in the context of hereditary cancer: the effects of an online decision aid on informed decision-making Kelly Reumkens 1,2 & Marly H. E. Tummers 1,2 & Yil Severijns 2,3 & Joyce J. G. Gietel-Habets 1,2 & Sander M. J. van Kuijk 4 & Cora M. Aalfs 5 & Christi J. van Asperen 6 & Margreet G. E. M. Ausems 7 & Margriet Collée 8 & Charlotte J. Dommering 9 & Marleen Kets 10 & Lizet E. van der Kolk 11 & Jan C. Oosterwijk 12 & Vivianne C. G. Tjan-Heijnen 2,13 & Trudy van der Weijden 14 & Christine E. M. de Die-Smulders 1,2 & Liesbeth A. D. M. van Osch 1,3 Received: 20 April 2020 / Accepted: 26 August 2020 # The Author(s) 2020
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 selfefficacy. 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. Keywords Decision aid . Hereditary cancer . Patient participation . Preimplantation genetic testing . Prenatal diagnosis
* Yil Severijns [email protected] 1
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Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands Department of Health Promotion, School CAPHRI, Faculty of Health, Medicine and Life Sciences, Maastricht University, Postbox 616, 6200, MD Maastricht, the Netherlands
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Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre+, Maastricht, the Netherlands
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Department of Clinical Genetics, Amsterdam UMC, Academic Medical Centre, Amsterdam, the Net
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