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

Deb Feldman-Stewart, Christine Tong, Michael Brundage, Jackie Bender, John Robinson

Abstract


Introduction: Prostate cancer patients’ information needs are welldescribed, 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.

Methods: 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.

Results: 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. Seventynine percent of respondents who saw only a urologist felt wellinformed 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%).

Conclusions: 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.


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DOI: http://dx.doi.org/10.5489/cuaj.4754