A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk
Breast Cancer Research and TreatmentPublished 27 February 2007Open access
Claire E. Wakefield, Bettina Meiser, Judi Homewood, Michelle Peate, Alan Taylor, Elizabeth Lobb
Citations79
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TL;DR
Decision aids are an effective decision-support strategy for women considering genetic testing for breast/ovarian cancer risk, and are most effective before the patient has made a decision, which is generally at the point of having blood drawn.
Abstract
Decision aids are an effective decision-support strategy for women considering genetic testing for breast/ovarian cancer risk, and are most effective before the patient has made a decision, which is generally at the point of having blood drawn.
Keywords
MedicineHealth ProfessionsBiochemistry, Genetics and Molecular Biology
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