Communicating prognosis in early breast cancer: do women understand the language used?

Objectives: To determine the degree to which women with early breast cancer understand the prognostic information communicated by clinicians after bre ast cancer diagnosis, and their preferences for how this information is pre sented. Design: Cross-sectional survey conducted within two months of breast cancer diagnosis, using a self-administered written questionnaire. Participants and setting: One hundred women attending five Sydney teaching hospitals and one country hospital, who were diagnosed with early stage bre ast cancer between January and December 1997. Results: The 100 respondents represented 70% of the 143 women originally ap proached to participate. Many respondents did not fully understand the lang uage typically used by surgeons and cancer specialists to describe prognosi s: 53% could not calculate risk reduction (with adjuvant therapy) relative to absolute risk; 73% did not understand the term "median" survival; and 33 % believed a cancer specialist could predict an individual patient's outcom e. Women in professional/ paraprofessional occupations understood more prog nostic information than nonprofessional women. There was no agreement on th e descriptive equivalent of a "30%" risk, nor the numerical interpretation of a "good" chance of survival. Forty-three per cent of women preferred pos itively framed messages (eg, "chance of cure"), and 33% negatively framed m essages (eg, "chance of relapse"). The information women most wanted was th at relating to probability of cure, staging of their cancer, chances of tre atment being successful, and 10-year survival figures with and without adju vant therapy. Conclusions: Our results suggest that misunderstanding is responsible for w omen's confusion about breast cancer prognosis. Clinicians should use a var iety of techniques to communicate prognosis and risk, and need to verify th at the information has been understood.