The development of an online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making: a usability and pilot study

Abstract

An online decision aid to support persons having a genetic predisposition to cancer and their partners during reproductive decision-making was developed. A two-phase usability test was conducted among 12 couples (N = 22; 2 persons participated without their partner) at risk for hereditary cancer and 15 health care providers. Couples and health care providers expressed similar suggestions for improvements, and evaluated the modified decision aid as acceptable, easy to use, and comprehensible. The final decision aid was pilot tested (N = 16) with paired sample t tests comparing main outcomes (decisional conflict, knowledge, realistic expectations regarding the reproductive options and decision self-efficacy) before (T0), immediately (T1) and 2 weeks after (T2) use of the decision aid. Pilot testing indicated decreased decisional conflict scores, increased knowledge, and improved realistic expectations regarding the reproductive options, at T1 and T2. No effect was found for couples' decision self-efficacy. The positive findings during usability testing were thus reflected in the pilot study. The decision aid will be further evaluated in a nationwide pretest-posttest study to facilitate implementation in the onco-genetic counselling setting. Ultimately, it is expected that the decision aid will enable end-users to make an informed decision.

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

“…An extensive explanation of the developmental process and the specific content of the decision aid are provided elsewhere (Reumkens, Tummers, et al, ). Overall, the decision aid contained: Information about the risk of transmitting the pathogenic variant to offspring and couples’ options to have genetically related children. Treatment burden of reproductive options and the chances of different outcomes (e.g., risk of miscarriage after PND) presented in multiple suitable formats using text and videos (e.g., verbal, and population diagrams) (Reumkens, Oudheusden, et al, ; Trevena et al, ). A comparative summary table of important features of each option. Value clarification exercises (VCE) (Fagerlin et al, ).…”

“…In order to promote informed reproductive decision‐making, the use of decision aids can be effective (Derks‐Smeets et al, ; Juraskova et al, ; O'Connor & Jacobsen, ; Quinn et al, ; Stacey et al, ). The present study is part of a larger study on the development and implementation of an online decision aid, developed in accordance with the International Patient Decision Aids Standards (Reumkens, Oudheusden, et al, ; Reumkens, Tummers, et al, ; Volk, Llewellyn‐Thomas, Stacey, & Elwyn, ). In this study, we report on the effects of the decision aid evaluated in a nationwide pretest‐posttest study in all clinical genetic centres in the Netherlands.…”

Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer

“…36 Lower balance ratings for the website may also be due to parents accidentally skipping relevant content, highlighting the need to improve navigation. While many online decision aids are acceptable, 37,38 our findings on Delta version preference and balance of content highlight the need for further work to compare the acceptability and effectiveness of online versus traditional decision aids.…”

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

“…An extensive explanation of the developmental process and the specific content of the decision aid is provided elsewhere [ 13 ]. Overall, the decision aid contained:…”

“…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.…”