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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

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
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
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-staged 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.
0941-4355
1-13
Grimmett, Chloe
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Brooks, Lotty
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Recio Saucedo, Alejandra
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Armstrong, Anne
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Cutress, Ramsey
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Evans, D. Gareth
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Copson, Ellen
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Turner, Lesley
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Meiser, Bettina
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Wakefield, Claire E.
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Eccles, Diana
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Foster, Claire
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Grimmett, Chloe
7f27e85b-2850-481d-a7dd-2835e1a925cd
Brooks, Lotty
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Recio Saucedo, Alejandra
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Armstrong, Anne
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Cutress, Ramsey
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Evans, D. Gareth
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Copson, Ellen
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Turner, Lesley
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Meiser, Bettina
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Wakefield, Claire E.
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Eccles, Diana
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Foster, Claire
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Grimmett, Chloe, Brooks, Lotty, Recio Saucedo, Alejandra, Armstrong, Anne, Cutress, Ramsey, Evans, D. Gareth, Copson, Ellen, Turner, Lesley, Meiser, Bettina, Wakefield, Claire E., Eccles, Diana and Foster, Claire (2018) 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. Supportive Care in Cancer, 1-13. (doi:10.1007/s00520-018-4307-x).

Record type: Article

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-staged 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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Development of Breast Cancer Choices A decision support tool ACCEPTED - Accepted Manuscript
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Accepted/In Press date: 6 June 2018
e-pub ahead of print date: 28 June 2018

Identifiers

Local EPrints ID: 421691
URI: https://eprints.soton.ac.uk/id/eprint/421691
ISSN: 0941-4355
PURE UUID: 794f6145-4a6d-4ae3-b322-1a15dffe7e52
ORCID for Chloe Grimmett: ORCID iD orcid.org/0000-0002-7540-7206
ORCID for Lotty Brooks: ORCID iD orcid.org/0000-0002-4461-1247
ORCID for Alejandra Recio Saucedo: ORCID iD orcid.org/0000-0003-2823-4573
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 21 Jun 2018 16:30
Last modified: 06 Jun 2019 04:01

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Contributors

Author: Chloe Grimmett ORCID iD
Author: Lotty Brooks ORCID iD
Author: Anne Armstrong
Author: Ramsey Cutress
Author: D. Gareth Evans
Author: Ellen Copson
Author: Lesley Turner
Author: Bettina Meiser
Author: Claire E. Wakefield
Author: Diana Eccles
Author: Claire Foster ORCID iD

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