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

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

*Corresponding author for this work

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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 (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.

Original languageEnglish
Number of pages10
JournalJournal of community genetics
DOIs
Publication statusPublished - 2-Sep-2020

Keywords

  • Decision aid
  • Hereditary cancer
  • Patient participation
  • Preimplantation genetic testing
  • Prenatal diagnosis
  • PREIMPLANTATION GENETIC DIAGNOSIS
  • COUPLES
  • BREAST
  • WOMEN
  • RISK
  • CARRIERS
  • OPTIONS
  • CHOICE
  • NEEDS

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