Purpose: Patients who experience health states rate them more highly and have more favorable attitude towards treatments than people who have not experienced the health states. We explored whether differences in factors taken into consideration by experienced and inexperienced women when making treatment decisions exist, which could partially explain these differences.

Methods: A web-based survey was used to elicit whether women would or did take into consideration various factors when making treatment decisions for DCIS and sociodemographic characteristics. 280 women previously treated for DCIS were identified from the Monroe County, NY Tumor Registry and sent a written invitation to participate. A convenience sample of women who have not experienced DCIS or invasive breast cancer were enrolled in the study following a negative screening mammogram. Bivariate and multivariate logistic regressions were performed to compare differences between experienced and inexperienced women.

Results: Seventy-six experienced women completed the survey (27% response rate). 184 inexperienced women completed the survey. As the recruitment strategy for the inexperienced women was passive, it was impossible to calculate a “response rate.” Experienced women were significantly older (p<.01), less likely to have education beyond high school (p<.05), less likely to have children living at home (p<.001), and more likely to have first degree relatives with breast cancer (p<.05). The top three factors taken into consideration by experienced and inexperienced women were avoiding recurrences, maximizing survival, and avoiding side effects. In bivariate analyses, experienced women were significantly less likely to consider survival (p=.02), side effects of treatment (p=.001), their family's preferences (p=.008), ability to care for themselves (p<.001), and out of pocket costs (p<.001) when making treatment decisions than inexperienced women. Controlling for age, race, marital status, education, having children at home and having at least one first degree relative with breast cancer, experienced women remained less likely to consider side effects (p=.005), maximizing survival (p=.001), ability to care for themselves (p<.001) and out of pocket costs (p<.001) when making treatment decisions than inexperienced women.

Conclusions: Experienced women were less likely to take many factors into consideration when making treatment decisions for DCIS than inexperienced women thought they would consider if faced with a DCIS diagnosis. These differences may partially explain differences between experienced and inexperienced women in their preferences for health states and treatments.