What questions do patients with curable prostate cancer want answered?

Purpose. To determine the questions that recently diagnosed early-stage pro state cancer patients think should be addressed with patients like themselv es. Study population. 56 patients diagnosed as having early-stage prostate cancer within the previous year. Methods. Surveys distributed to the patien ts included 93 questions that might be considered important. Respondents ju dged the importance (essential / desired / no opinion / avoid) of addressin g each question, and indicated why those "essential" or "desired" were impo rtant. Results. 38 patients (68%) responded. Agreement on question importan ce, overall, was rather poor (mean 41.6%, kappa 0.17). There were, however, 20 questions that at least 67% of the respondents agreed were essential to address and 12 that they agreed were not essential. No question was releva nt to the treatment decisions of more than 50% of respondents, but 91 quest ions were relevant to at least one respondent's decision. Conclusions. Alth ough there was enough agreement to define a core set of questions that shou ld be addressed with most patients, each of the remaining questions was als o considered essential to some people. The core set, therefore, would not b e adequate to satisfy any one patient's essential information needs. Wherea s most questions would be needed to cover all patients' decision needs, onl y some are needed for any given patient. Such variability in information ne eds means that the subjective standard is the only viable legal standard fo r judging the adequacy of provision of information for the treatment decisi on.