What Questions Do Patients with Curable Prostate Cancer Want Answered?

PURPOSE: To determine the questions that recently diagnosed early-stage prostate cancer patients think should be addressed with patients like themselves. STUDY POPULATION: 56 patients diagnosed as having early-stage prostate cancer within the previous year. METHODS: Surveys distributed to the patients included 93 questions that might be considered important. Respondents judged the importance (essential/desired/no opinion/avoid) of addressing each question, and indicated why those "essential" or "desired" were important. RESULTS: 38 patients (68%) responded. Agreement on question importance, 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 relevant to the treatment decisions of more than 50% of respondents, but 91 questions were relevant to at least one respondent's decision. CONCLUSIONS: Although there was enough agreement to define a core set of questions that should be addressed with most patients, each of the remaining questions was also considered essential to some people. The core set, therefore, would not be adequate to satisfy any one patient's essential information needs. Whereas most questions would be needed to cover all patients' decision needs, only some are needed for any given patient. Such variability in information needs means that the subjective standard is the only viable legal standard for judging the adequacy of provision of information for the treatment decision.