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

Reumkens, K.; Tummers, M.H.E.; Severijns, Y.; Gietel-Habets, J.J.G.; Kuijk, S.M.J. van; Aalfs, C.M.; Asperen, C.J. van; Ausems, M.G.E.M.; Collee, M.; Dommering, C.J.; Kets, M.; Kolk, L.E. van der; Oosterwijk, J.C.; Tjan-Heijnen, V.C.G.; Weijden, T. van der; Die-Smulders, C.E.M. de; Osch, L.A.D.M. van

doi:doi:10.1007/s12687-020-00484-2

Persistent URL of this record https://hdl.handle.net/1887/3195993

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Medicine / Leiden University Medical Centre (LUMC)

Reumkens, K.; Tummers, M.H.E.; Severijns, Y.; Gietel-Habets, J.J.G.; Kuijk, S.M.J. van; Aalfs, C.M.; ... ; Osch, L.A.D.M. van (2020)

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

Article / Letter to editor

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 (allps < 0.05; knowledge (ES = - 1.05),...Show moreIndividuals 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 (allps < 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.Show less

Decision aid

Hereditary cancer

Patient participation

Preimplantation genetic testing

Prenatal diagnosis