TY - JOUR
T1 - Reproductive decision-making in the context of hereditary cancer
T2 - the effects of an online decision aid on informed decision-making
AU - Reumkens, Kelly
AU - Tummers, Marly H. E.
AU - Severijns, Yil
AU - Gietel-Habets, Joyce J. G.
AU - van Kuijk, Sander M. J.
AU - Aalfs, Cora M.
AU - van Asperen, Christi J.
AU - Ausems, Margreet G. E. M.
AU - Collee, Margriet
AU - Dommering, Charlotte J.
AU - Kets, Marleen
AU - van der Kolk, Lizet E.
AU - Oosterwijk, Jan C.
AU - Tjan-Heijnen, Vivianne C. G.
AU - van der Weijden, Trudy
AU - de Die-Smulders, Christine E. M.
AU - van Osch, Liesbeth A. D. M.
PY - 2021/1
Y1 - 2021/1
N2 - 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), 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.
AB - 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), 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.
KW - Decision aid
KW - Hereditary cancer
KW - Patient participation
KW - Preimplantation genetic testing
KW - Prenatal diagnosis
KW - PREIMPLANTATION GENETIC DIAGNOSIS
KW - COUPLES
KW - BREAST
KW - WOMEN
KW - RISK
KW - CARRIERS
KW - OPTIONS
KW - CHOICE
KW - NEEDS
U2 - 10.1007/s12687-020-00484-2
DO - 10.1007/s12687-020-00484-2
M3 - Article
SN - 1868-310X
VL - 12
SP - 101
EP - 110
JO - Journal of community genetics
JF - Journal of community genetics
ER -