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

Authors :
Reumkens K
Tummers MHE
Severijns Y
Gietel-Habets JJG
van Kuijk SMJ
Aalfs CM
van Asperen CJ
Ausems MGEM
Collée M
Dommering CJ
Kets M
van der Kolk LE
Oosterwijk JC
Tjan-Heijnen VCG
van der Weijden T
de Die-Smulders CEM
van Osch LADM
Source :
Journal of community genetics [J Community Genet] 2021 Jan; Vol. 12 (1), pp. 101-110. Date of Electronic Publication: 2020 Sep 02.
Publication Year :
2021

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.

Details

Language :
English
ISSN :
1868-310X
Volume :
12
Issue :
1
Database :
MEDLINE
Journal :
Journal of community genetics
Publication Type :
Academic Journal
Accession number :
32880035
Full Text :
https://doi.org/10.1007/s12687-020-00484-2