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

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

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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.
Original languageEnglish
JournalSupportive Care in Cancer
Early online date28 Jun 2018
DOIs
Publication statusPublished - 2018

Keywords

  • decision aid
  • BRCA
  • genetic testing
  • Breast cancer

Research Beacons, Institutes and Platforms

  • Manchester Cancer Research Centre

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