Overall information needs of early-stage prostate cancer patients over a decade: highly variable and remarkably stable

PURPOSE: To assess the stability of information needs of early-stage prostate cancer patients by comparing needs in the same location, at two time points, almost 10 years apart. METHOD: Two groups of patients were surveyed (first, 1996; second, 2005) to identify retrospectively their information needs in the diagnosis-to-treatment-decision time interval. Both sampling cohorts were men diagnosed in one location in Canada within the previous 2 years. Participants rated the importance of getting answers to each of 92 questions (organized in eight categories) using four options: essential, desired, no opinion, or avoid. For each essential and desired question, respondents also indicated the reason(s) they wanted the question addressed: to understand, decide, plan, or other. RESULTS: The two groups had similar response rates: 38 (68%) in 1996 and 130 (70%) in 2005. They also had similar ages, marital status, or education. Both groups rated means of: 49 questions "essential" with wide ranges across respondents (12-90 vs 0-92 questions); 73 questions as "essential"/"desired"; and two questions to "avoid". At both times, every question was essential to some participants but only six (in 1996) and 12 (in 2005) questions were essential to over 80% of participants. In both groups, the most frequent reason for essential questions was for understanding (mean number of questions 34 vs 36), followed by decision making (means 13 vs 19), and then planning (means 10 vs 15). CONCLUSIONS: We have demonstrated reliably that, although many patients want a lot of information, the range in amount and in exact details varies considerably across individuals. Systematic patient education is needed, therefore, but it must be individualized.