Objective: To determine the information that men diagnosed with early-stage prostate cancer think is necessary to choose their treatment (surgery, radiotherapy or 'watchful waiting').
Patients and methods: All men diagnosed with early-stage prostate cancer in a regional urology practice in an 18-month period were surveyed. Respondents considered the treatment decision for a specific hypothetical case and judged whether each of 59 specific information items would be 'necessary' to know to make the treatment decision. Respondents provided basic demographic information (age, education and marital status).
Results: Of 89 patients, 71 (80%) responded; the mean (SD, range) number of items that individual respondents identified as necessary was 32 (12, 9-58). Each item was considered necessary by 54 (18, 20-93)% of respondents. Of the 59 items, only five were necessary to > or = 80% of respondents; 23 were necessary to > or = 67% of respondents and five were not necessary to > or = 67% of respondents. Patients were divided about the remaining 31 items. There were no strong correlations (none accounted for > 20% of the variance) between the responses and demographic characteristics.
Conclusions: There appears to be large variation among patients with early-stage prostate cancer in the number of information items deemed necessary to make a treatment decision, and little agreement on the need for most individual items. Demographic characteristics were not useful as predictors of the information needs of each patient. The process of informing patients with early-stage prostate cancer (and their decision aids) needs to be flexible and able to accommodate a wide range of patients' information needs.