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

Autor: Reumkens K; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands. Kelly.reumkens@mumc.nl.; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands. Kelly.reumkens@mumc.nl., van Oudheusden AJG; Department of Health Promotion, Maastricht University Medical Centre+, Maastricht, the Netherlands., Gietel-Habets JJG; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands., Tummers MHE; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands., de Die-Smulders CEM; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.; GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands., van Osch LADM; Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, the Netherlands.; Department of Health Promotion, Maastricht University Medical Centre+, Maastricht, the Netherlands.; School CAPHRI, Care and Public Health Research Institute, Maastricht University Medical Centre+, Maastricht, the Netherlands.
Jazyk: angličtina
Zdroj: Journal of genetic counseling [J Genet Couns] 2018 Aug; Vol. 27 (4), pp. 920-926. Date of Electronic Publication: 2018 Jan 25.
DOI: 10.1007/s10897-017-0204-6
Abstrakt: 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.
Databáze: MEDLINE
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