PROSTATE CANCER PATIENTS' PREFERENCES FOR INFORMATION AND DECISION SUPPORT: WHERE, WHEN, AND HOW?

Purpose: To determine, among Canadian prostate cancer patients, population-based patterns of preferences for information and decision support:  where, when, and how.

Method: Surveys were conducted in two provinces (BC&AB) in late 2014, using a modified Dillman mail-survey methodology.  A random sample of ~55% of the population of men in each provincial registry diagnosed with prostate cancer in the last half of 2012 was surveyed.   

Results:  BC and AB response rates were 52% (N=501) and 46% (N=323), respectively.  Responses were similar between the provinces; combined results are presented.  Overall, mean age was 69.5 years old. Between diagnosis and treatment decision, the most frequently preferred sources of information were urologists (96%), family physicians (91%), books (84%), internet (68%) and radiation oncologists (66%). Barriers to obtaining desired information from physicians included not having enough time (31%), worrying about time (26%), and worrying about asking too many questions (18%).  Barriers to obtaining desired information from books and internet, respectively, included uncertain quality (47%/58%), unclear if personally applicable (47%/53%), and poor search skills (37%/20%).  Recommended facilitators for providing information included providing printed information (96%), a person to guide information acquisition (83%), and someone to answer questions:  in person (90%), over the phone (54%), or via email (54%).  Even if access was easy, 32% of respondents would not have wanted any information from the internet, and 16% would not have wanted any printed information.  Regarding decision making, 22% would have liked more help with the decision, despite 53% of that group feeling well informed.  63% of respondents never heard of decision aids before, 26% used one and found it helpful, and 6% would not have wanted to use one.  34% had never heard of the broader category of decision support but would have been interested in learning about it.  Recommended timing for offering decision support included before patients meet any specialists (10%), at the urologist visit (34%), and after all specialist visits before the decision is made with a doctor (42%).

Conclusion: Most prostate cancer patients want information and decision support but preferences for where, when, and what medium to receive it in varies widely. To be optimal, systematic support will need to be multi-faceted and flexible.