Prostate cancer patients' experience and preferences for acquiring information early in their care.

Abstract

Prostate cancer patients' information needs are well-described, but little is known about their preferred sources and media for obtaining information. We sought to determine prostate cancer patients' experiences and preferences for acquiring information after diagnosis, a time of high information need. Population surveys were conducted in four Canadian provinces in 2014-2015. Each provincial cancer registry surveyed a random sample of prostate cancer patients diagnosed in late 2012. A total of 1366 patients responded across provinces. Respondents most frequently tried to obtain information from their urologist; 86% found that easy and 9% found it difficult. Seventy-nine percent of respondents who saw only a urologist felt well-informed compared to 86% of those who saw both a urologist and a radiation oncologist. Eighty-five percent of respondents wanted printed information; 68% wanted it electronically. Respondents' most frequent barriers to obtaining information from physicians were: not actually having enough time (31%), worrying about having enough time (23%), and worrying about asking too many questions (18%). Their most frequent barriers related to internet/printed information, respectively, were uncertainty about quality (63%/49%) and unclear if personally applicable (56%/49%). Recommended facilitators were having a navigator (85%), providing printed information (85%), and someone to answer questions: in person (90%), by phone (66%), or via email (58%). Prostate cancer patients want urologists to provide them with information and are more likely to report being informed if they see both a urologist and a radiation oncologist. Optimal information provision requires that it be provided both on the internet and in print.