SI RLTD: Risk Scores and Decision Making: The Anatomy of a Decision to Reduce Breast Cancer Risk

AIM: To report the use of a risk score for risk treatment decision-making in women at risk for breast cancer in order to better understand their decision-making situation. BACKGROUND: Tamoxifen and Raloxifene are medications that have been proven to reduce the risk of breast cancer. However, women who understand their personal net benefit from Tamoxifen use chose not to take the medication. To understand this decision, the paper investigates the use of epidemiological risk information in the decision-making process for risk-reducing treatments. METHODS: The narratives of two women are analyzed as they recall their risk score and explain their decision-making process concerning participation in the Study of Tamoxifen and Raloxifene (STAR). Both in-depth interviews follow a narrative approach and were recorded in a U.S. cancer center in 2005. RESULTS: Thinking about risk by analyzing the chances of developing a disease is specific to complex decision-making situations. The associated risk-benefit analysis has to be conducted qualitatively as epidemiological risk information cannot know all details of a woman's life. In addition, a woman's decision is based on the perception of the condition as risk or as disease. Women are willing to treat risk that is perceived as disease, especially when it is based on bodily measurements on which the treatment has an effect. Women are not willing to treat a risk not perceived as disease. CONCLUSION: The net benefit of a treatment as calculated based on epidemiological data cannot easily be translated onto an individual's life. Thus, the complex experience of a woman's life at risk is highly important in decision-making situations. RELEVANCE TO CLINICAL PRACTICE: The ambiguity of statistical risk estimates should be acknowledged and the women's evaluation of her risk valued in risk treatment decision-making.