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. 2018 Aug;27(4):920-926.
doi: 10.1007/s10897-017-0204-6. Epub 2018 Jan 25.

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

Kelly Reumkens  1   2 , A J G van Oudheusden  3 , J J G Gietel-Habets  4   5 , M H E Tummers  4   5 , C E M de Die-Smulders  4   5 , L A D M van Osch  4   3   6
Affiliations

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

Kelly Reumkens et al. J Genet Couns. 2018 Aug.

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.

Keywords: Child wish; Counseling; Decision aid; Hereditary cancer; Informed decision-making; Oncology; Prenatal diagnosis and preimplantation genetic diagnosis.

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Conflict of interest statement

Conflict of Interest

K. Reumkens, A.J.G. van Oudheusden, J.J.G. Gietel-Habets, M.H.E. Tummers, C.E.M. de Die-Smulders, and L.A.D.M. van Osch declare that they have no conflict of interest.

Human Studies and Informed Consent

Informed consent was obtained from all individual participants included in this study.

Animal Studies

No animal studies were carried out by the authors for this article.

References

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