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

Abstract

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.

Exploring the preferences of involved health professionals regarding the implementation of an online decision aid to support couples during reproductive decision-making in hereditary cancer: a mixed methods approach

“…Although health professionals agreed that the current version of the decision aid is appropriate to provide to eligible couples, just over half of the health professionals indicated in the questionnaire that the decision aid fits within their routine clinical practice. The recruitment of couples for the effect study [ 14 ] occurred with flyers including unique login data for the decision aid. The experience of health professionals during this recruitment period may have contributed to the strong preference for the use of a freely accessible decision aid, as many participants indicated that they found the use of paper-based materials (e.g.…”

“…However, no initiatives to support couples with a predisposition to hereditary cancer in the decision-making regarding their wish to have children have been reported in the literature. The present study is part of a larger study on the development, evaluation, and implementation of an online decision aid with the aim of supporting persons having a genetic predisposition to cancer and their partners in making an informed reproductive decision [ 12 – 14 ]. The decision aid is meant for couples who have a high genetic risk, mostly 50%, due to autosomal dominant inheritance, of transmitting a pathogenic variant to offspring with a high risk of a future malignancy (e.g.…”

“…The decision aid was developed as a tool to be used in the home environment and has been proven to be effective in supporting couples during their reproductive decision-making process. A reduction in mean decisional conflict and decisional self-efficacy scores, an increase in knowledge levels, levels of deliberation and improved realistic expectations were found [ 13 , 14 , 23 ]. This study aims at developing the optimal implementation strategy for the decision aid by investigating the preferences of health professionals involved in oncogenetic consultations in the Netherlands.…”

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

“…The present study is part of a larger project on the development and implementation of an online decision aid with the aim of supporting couples who are aware that one of them has a genetic predisposition to cancer, to decide on the personally most suitable reproductive option (Reumkens et al 2018 ; Reumkens et al 2019a ). In a previous study, short-term effects of the online decision aid in supporting informed reproductive decision-making among our target group were investigated (Reumkens et al 2019b ). In this study, we report on the effects on informed decision-making by both partners.…”

A reproductive dilemma?

“…Moreover, level of deliberation and decision self-efficacy improved for those with low baseline levels. 66 These findings support the use and continued optimization of decision support tools in reproductive counselling of couples with hereditary cancer. It is advised to provide this form of decision support in addition to general counselling.…”