Reproductive Decision Support: Preferences and Needs of Couples at Risk for Hereditary Cancer and Clinical Geneticists

Abstract

For couples at high risk of transmitting a cancer predisposition to offspring, reproductive decision-making can be challenging. As the choice between available reproductive options is preference-sensitive, the use of a decision aid can support these couples in their decisional process. The present study aims to investigate preferences and needs of involved stakeholders regarding the development and implementation of a patient decision aid. Semi-structured interviews assessing the needs and preferences regarding the content and functionalities of a decision support program were conducted among seven couples at risk for hereditary cancer and among eight clinical geneticists involved in oncogenetic counseling. Many similarities were found between the expressed preferences and needs of both stakeholder groups concerning the content, barriers and facilitating factors regarding the use of the decision aid, and its implementation. Emphasis was placed on the use of simple non-medical language, an extensive explanation of the procedures and techniques used in prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD), and the role of health care providers to refer couples to the decision aid. Both stakeholder groups were in favor of incorporating narrative stories in the decision aid. Integrating the present findings with knowledge on reproductive decisional motives and considerations is essential in guiding the development of a decision aid that corresponds to the preferences and needs of end-users. Trial registration: NTR5467

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, ). A total of 18 statements represents values and motives considered important for reproductive decision‐making (Derks‐Smeets et al, ). By linking login codes, a combined overview of both partners’ responses on the VCE was provided. A question prompt sheet, providing examples of questions and requests for additional information and space for own questions. Information regarding the scientific resources used to underpin the decision aids content, the development team, funding resources, and contact information. …”

“…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.…”

Support needs of couples with hereditary breast and ovarian cancer during reproductive decision making

“…Regarding decision support tools, access to personal narratives of other couples' experiences was most appreciated by couples. Although at present there is insufficient evidence about the effectiveness of personal narratives on informed decision making and scientific guidance for a balanced presentation of these narratives is lacking, we should not ignore this need that has been raised before and further research on this topic is required . Among couples who opted for PGD, a lack of support from involved professionals (other than the PGD physician) was experienced.…”

“…Although at present there is insufficient evidence about the effectiveness of personal narratives on informed decision making and scientific guidance for a balanced presentation of these narratives is lacking, we should not ignore this need that has been raised before and further research on this topic is required. 28,29 Among couples who opted for PGD, a lack of support from involved professionals (other than the PGD physician) was experienced. Involved professionals should become better educated about PGD, especially since a previous study in the Netherlands showed that merely half of the professionals involved in reproduction and oncology is aware of PGD as a reproductive option for HBOC and their knowledge is limited, 30 while 66% of BRCA carriers and their partners are aware of PGD.…”

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

“…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.…”