Online decision support for persons having a genetic predisposition to cancer and their partners during reproductive decision-making

Kelly Reumkens*, Marly H. E. Tummers, 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, C. 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

Research output: Contribution to journalArticleAcademicpeer-review


A nationwide pretest-posttest study was conducted in all clinical genetic centres in the Netherlands, to evaluate the effects of an online decision aid to support persons who have a genetic predisposition to cancer and their partners in making an informed decision regarding reproductive options. Main outcomes (decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy) were measured before use (T0), immediately after use (T1), and at 2 weeks (T2) after use of the decision aid. Paired sample t tests were used to compute differences between the first and subsequent measurements. T0-T1 and T0-T2 comparisons indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict. Furthermore, use of the decision aid resulted in increased knowledge levels and improved realistic expectations. Level of deliberation only increased for participants with lower baseline levels of deliberation. Decision self-efficacy increased for those with low baseline scores, whereas those with high baseline scores showed a reduction at T2. It can be concluded that use of the decision aid resulted in several positive outcomes indicative of informed decision-making. The decision aid is an appropriate and highly appreciated tool to be used in addition to reproductive counseling.

Original languageEnglish
Pages (from-to)533-542
Number of pages10
JournalJournal of Genetic Counseling
Issue number3
Publication statusPublished - Jun 2019


  • counseling
  • decision aid
  • genetics
  • hereditary cancer
  • informed decision-making
  • oncology
  • patient participation
  • reproductive decision-making
  • RISK
  • BRCA1

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