The information needed by Canadian early-stage prostate cancer patients for decision-making: stable over a decade

To compare information needs for decision-making by similar cohorts of Canadian early-stage prostate cancer patients, at two time points a decade apart.

Two patient groups (1st-1996, 2nd-2005), diagnosed within the previous 2 years, were surveyed. They rated the importance of having each of 92 questions addressed, using options: essential, desired, no opinion, or avoid. For each essential or desired question, respondents indicated their reasons for wanting the question addressed: to understand, decide, plan, or other.

The two groups had similar response rates and demographics. The mean number of questions rated essential for decision-making/patient trended toward more by the later group (13 questions vs 19 questions) but, more importantly, there was wide variation within each group (0-68 questions vs 0-92 questions). The percentage of essential ratings for decision-making per question was highly correlated between the groups. Although almost every question was essential for decision-making to >1 patient, no question was essential to >50% in either group.

At both times, most Canadian early-stage prostate cancer patients wanted some information specifically for decision-making, however, both the amount and exact details varied considerably amongst patients.

Decision support for these patients should continue to accommodate wide variation in their information needs.