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01-01-2019 | Original Article

Development of Breast Cancer Choices: a decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1/2 mutations

Authors: Chloe Grimmett, Charlotte Brooks, Alejandra Recio-Saucedo, Anne Armstrong, Ramsey I Cutress, D Gareth Evans, Ellen Copson, Lesley Turner, Bettina Meiser, Claire E. Wakefield, Diana Eccles, Claire Foster

Published in: Supportive Care in Cancer | Issue 1/2019

Abstract

Purpose

To develop a decision support tool for young women with breast cancer considering genetic testing for BRCA1/2 mutations soon after cancer diagnosis.

Methods

A four-stage iterative development process was employed; stage 1, literature review exploring the availability and efficacy of empirically tested decision support tools; stage 2, in-depth interviews with 29 young women (< 50 years) recently diagnosed with breast cancer, exploring information requirements and experiences of genetic testing decision making; stage 3, three focus groups (N = 21) exploring preferences for information presentation and prioritisation of content; stage 4, think-aloud interviews to refine the prototype (N = 16).

Results

Participants wanted information regarding the pros and cons of testing, the testing process and implications for their family, presented in a way that allowed them to choose the level of detail they required. They preferred the term ‘altered gene’, valued a medical word definition function and warnings before accessing sensitive information.

Conclusion

Participants valued the decision support tool, the accessibility of the information and its clinical endorsement. The decision support tool has considerable clinical utility as an adjunct to genetic counselling or for use in busy oncology clinics where formal genetic counselling may be unavailable.

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Title: Development of Breast Cancer Choices: a decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1/2 mutations
Authors: Chloe Grimmett
Charlotte Brooks
Alejandra Recio-Saucedo
Anne Armstrong
Ramsey I Cutress
D Gareth Evans
Ellen Copson
Lesley Turner
Bettina Meiser
Claire E. Wakefield
Diana Eccles
Claire Foster
Publication date: 01-01-2019
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 1/2019
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4307-x

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