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Decision Tool Helps High-Risk Women Sort Through Difficult Choices
by Liz Schackmann, MS
When Allison W. Kurian, MD, MSc, and Sylvia K. Plevritis, PhD, created a mathematical model to analyze options for BRCA1/2 cancer risk reduction, they were eager to share the results with previvors and their physicians. Kurian, who is Assistant Professor and Associate Director of the Clinical Cancer Genetics Program at Stanford University, and Plevritis, Associate Professor and Co-Director of Information Sciences in Radiology at Stanford, decided to build an online tool to help guide shared decision making about cancer risk reduction between women and their health care teams.
Drs. Plevritis and Kurian consulted with expert physicians, and drew on their clinical experience about what women with BRCA1/2 mutations might want from a decision tool. The result is an interactive website (http://brcatool. stanford.edu) that allows previvors to view estimates of their chances of developing breast or ovarian cancer based on their age and mutation status (BRCA1 or BRCA2), and based on choices they might make about screening and preventive surgeries.
After the user selects options, the tool provides a bar graph for each option, displaying probabilities of the following estimated outcomes by age 70: never being diagnosed with cancer, surviving breast or ovarian cancer, dying of breast or ovarian cancer, or dying from other causes. It is important to note that the estimates are derived from the combined results of multiple scientific studies, not from a dedicated clinical trial. Of course, no computer model can accurately predict the future for any individual woman. Rather, the tool’s results should be used as a general framework to guide choices.
Since the tool became publicly available in January 2012, it has received an average of 1,400 visits per month from the United States and internationally. The authors have since published the results of pilot testing the tool at the 2011 Joining Forces conference. Women who reviewed the tool provided many insightful comments and recommendations, which were used to revise and improve it.
Kurian AW, Munoz DM, Rust P, et al. “Online tool to guide decisions for BRCA1/2 mutation carriers.” Journal of Clinical Oncology 2012; 30:497-506.
Schackmann EA, Munoz DF, Mills MA, et al. “Feasibility evaluation of an online tool to guide decisions for BRCA1/2 mutation carriers.” Familial Cancer 2013; 12:65-73.
Liz Schackmann was a Research Assistant with the Clinical Cancer Genetics Program at Stanford University from 2010-2012, during which time she helped to develop and pilot test the Stanford BRCA Decision Support Tool. She is currently a second-year medical student at the University of Utah School of Medicine in Salt Lake City, Utah.
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