Chloe Grimmett1, Charlotte Brooks1, Alejandra Recio-Saucedo2, Anne Armstrong3, Ramsey I Cutress4, D Gareth Evans5, Ellen Copson4, Lesley Turner6, Bettina Meiser7, Claire E Wakefield8,9, Diana Eccles10, Claire Foster11. 1. Faculty of Health Sciences, University of Southampton, Southampton, UK. 2. National Institute for Health Research (NIHR) Collaboration for Applied Health Research and Care (CLAHRC) Wessex, University of Southampton, Southampton, UK. 3. Christie Hospital NHS Foundation Trust and Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK. 4. Cancer Sciences, Faculty of Medicine, University Hospital Southampton NHS Foundation Trust, Southampton, UK. 5. Genomic Medicine, Division of Evolution and Genomic Sciences, University of Manchester, Manchester, UK. 6. Research Partner, Southampton, UK. 7. Faculty of Medicine, University of New South Wales, Kensington, NSW, 2033, Australia. 8. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia. 9. School of Women's and Children's Health, UNSW Sydney, Sydney, NSW, 2031, Australia. 10. Cancer Sciences, Faculty of Medicine, University Hospital Southampton NHS Foundation Trust, Southampton, UK. D.M.Eccles@soton.ac.uk. 11. Faculty of Health Sciences, University of Southampton, Southampton, UK. C.L.Foster@soton.ac.uk.
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.
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.
Entities:
Keywords:
BRCA; Breast cancer; Decision aid; Genetic testing
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