Women's views on chemoprevention of breast cancer: qualitative study.

OBJECTIVE: To determine, in a family practice setting, women's views on incentives for and barriers to taking chemopreventive therapy for breast cancer.

DESIGN: Descriptive, qualitative study using in-depth semistructured interviews.

SETTING: Women's College Family Practice Health Centre, an academic centre in Toronto, Ont.

PARTICIPANTS: THREE GROUPS OF WOMEN WERE RECRUITED: women who might in future be candidates for chemoprevention, women who were then candidates for chemoprevention, and then-current participants in the Study of Tamoxifen and Raloxifene (STAR) chemoprevention trial.

METHOD: Women were asked about their views on taking a pill to prevent breast cancer, their hopes and expectations regarding chemoprevention, incentives for and barriers to accepting chemopreventive therapy, and their preferred sources of information. Visual analogue scales were used to estimate perceived risk of breast cancer and personal interest in chemoprevention. Participants' Gail scores, perceptions of risk of breast cancer, perceptions of likelihood of accepting chemopreventive treatment, attitudes, views, and experiences were recorded.

MAIN FINDINGS: The 27 women interviewed (median age 61 years, range 38 to 77) had a mean Gail score of 3.3 (indicating a 3.3% estimated risk of breast cancer within the next 5 years), range 1.4 to 6.8. Women were very interested in chemoprevention (62% to 67% likelihood of their taking it in the next 5 years). Perceived risk of breast cancer was not correlated with actual risk or with likelihood of taking chemopreventive therapy. To accept chemoprevention, women needed to know it would lead to an acceptable decrease in risk of breast cancer and needed more information about the medication. Incentives for acceptance included clear evidence of efficacy, prevention of cancer, altruism (contributing to an important area of research), secondary gain, and the feeling of being proactive and in control. Barriers included fear of side effects, lack of information, denial, aversion to medication, the term "chemoprevention," and the effect of the "HRT fiasco." Women's most trusted information source was their family physicians. Women overestimated their risk of breast cancer.

CONCLUSION: Women were interested in chemoprevention, but required more information, preferably from their family physicians. Our data suggest that at least 4 conditions must be met for women to accept chemopreventive therapy. They must believe in its effectiveness, be proactive about their health care, believe side effects will be tolerable, and be able to overcome the fear of ingesting a pill. To make the therapy more acceptable, the term "chemoprevention" should be discontinued.