INFORMATION NEEDS AND DECISIONAL PREFERENCES IN WOMEN WITH BREAST-CANCER

Objective.-To determine the degree of involvement women with breast ca ncer wanted in medical decision making, extent to which they believed they had achieved their preferred level of involvement, and types of i nformation they judged to be most important. Design and Setting.-Cross -sectional survey at 2 tertiary oncology referral clinics and 2 commun ity hospital oncology clinics in Winnipeg, Manitoba. Patients.-Consecu tive sample of 1012 women with a confirmed diagnosis of breast cancer who were scheduled for a visit at 1 of 4 hospital oncology clinics. Ma in Outcome Measures.-The following measures were used: (1) Preferences about various levels of participation in treatment decision making; ( 2) the extent to which subjects believed they had achieved their prefe rred levels of involvement in decision making; and (3) priority needs for information and how these needs differed by selected sociodemograp hic, disease, and treatment variables.Results.-A total of 22% of women wanted to select their own cancer treatment, 44% wanted to select the ir treatment collaboratively with their physicians, and 34% wanted to delegate this responsibility to their physicians. Only 42% of women be lieved they had achieved their preferred level of control in decision making. The 2 most highly ranked types of information were related to knowing about chances of cure and spread of disease. Women younger tha n 50 years rated information about physical and sexual attractiveness as more important than did older women (P<.001); women older than 70 y ears rated information about self-care as more important than did youn ger women (P=.002); and women who had a positive family history of bre ast cancer rated information about family risk as more important than did other women (P=.03). Conclusions.-The substantial discrepancy betw een women's preferred and attained levels of involvement in treatment decision making suggests that systematic approaches to assess and resp ond to women's desired level of participation in treatment decision ma king need to be evaluated. Priorities for information identified in th is study provide an empirical basis to guide communication with women seeking care for breast cancer.