Abstract
Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Québec City (2), Montréal (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1—numerical: cumulative risk probabilities by age until 80 years; 2—risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3—relative risk of breast cancer by age 80 years; 4 and 5—absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6—qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.
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Acknowledgements
We thank all study participants for the invaluable contribution of their time and effort. We also wish to thank the following people for their ongoing support of this research project: Stéphanie Côté (recruitment), Josée Rhéaume (recruitment), Claudia Côté (data and quality management), Ursula Donovan (linguistic revision), Christine Melançon (moderator) and Tom Rygby (report and analyses) from Ipsos Descarie.
Research support: The research program is supported by the Canadian Institutes of Health Research for the “CIHR Team in Familial Risks of Breast Cancer” program (CIHR; CRN-87521) and the Ministry of Economic Development, Innovation and Export Trade of Quebec (PSR-SIIRI-701); MD held a Fonds de la Recherche en Santé du Québec research Fellowship when this work was done; JS is Chair holder of the Canada Research Chair in Oncogenetics.
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Dorval, M., Bouchard, K., Chiquette, J. et al. A focus group study on breast cancer risk presentation: one format does not fit all. Eur J Hum Genet 21, 719–724 (2013). https://doi.org/10.1038/ejhg.2012.248
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DOI: https://doi.org/10.1038/ejhg.2012.248
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