Purpose: A survey of breast cancer survivors in the United States was conducted to define what they had been told about their prognosis and the value of adjuvant therapy, what they estimated their prognosis to be with and without adjuvant therapy, and what level of improvement they would have found minimally worthwhile.
Materials and methods: Survey questionnaires were mailed to individual members and member organizations of the National Alliance of Breast Cancer Organizations (NABCO). Questionnaires were returned anonymously in prepaid mailers. Five hundred sixty-two women responded. Of these, the 318 women who received adjuvant chemotherapy were included in this analysis.
Results: Only 39% of the women recalled receiving quantitative estimates of their prognosis, and only 31% of women received a quantitative estimate both with and without adjuvant therapy. Sixty-eight percent of the women were able to provide a quantitative estimate for their outcome at 5 years both with and without adjuvant therapy. From these estimates, we calculated that the median estimated proportional risk reduction for recurrence that women thought they had achieved was 79%. Women were asked what degree of absolute benefit they would have found acceptable. The median acceptable extension of life expectancy was 3 to 6 months, and acceptable reduction in recurrence risk was 0.5% to 1.0%. However, there was considerable variation, with 27% of women not accepting less than 1 year and 26% not accepting a less than 5% reduction in recurrence risk.
Conclusion: In general, American women in the surveyed population (1) do not recall being provided quantitative estimates of outcome during the process of making decisions about adjuvant therapy, (2) overestimate the value of their therapy, and (3) often will accept remarkably low degrees of net benefit. Overall, these observations can be used to support the argument that improvements in doctor/patient communication may be important to truly informed decision-making, and that flexibility for individual patients' preferences should not be superseded by rigid treatment guidelines.