Patient-Reported Needs Following a Referral for Colorectal Cancer Screening

Introduction: Patient–physician communication about colorectal cancer screening can affect screening use, but discussions often lack information that patients need for informed decision making and seldom address personal preferences or barriers. To address this gap, a series of patient focus groups was conducted to guide the development of an online, interactive decision support program. This article presents findings on patient information needs and barriers to colorectal cancer screening after receiving a screening recommendation from a physician, and their perspectives on using electronic patient portals as platforms for health-related decision support. Methods: Primary care patients with recent colonoscopy or stool testing orders were identified via the centralized data repository of a large Midwestern health system. Seven gender-stratified focus groups (N=45 participants) were convened between April and July 2016. Sessions were audio recorded, transcribed, coded, and analyzed for commonly expressed themes beginning in August 2016. Results: Findings reveal a consistent need for simple and clear information on colorectal cancer screening. Participants desired step-by-step explanations of the colonoscopy procedure and information about bowel preparation options/alternatives. The desired level of additional information varied: some patients wanted to know about and act on test options, whereas others preferred following their physician-recommended testing path. Fears and concerns were prevalent, particularly about colonoscopy, and patients reported challenges getting these concerns and their informational needs addressed. Finally, they expressed consistent support for using the patient portal to gather additional information from their physician. Conclusions: Patient portals may offer an opportunity to build sustainable programs for decision support and assistance that are integrated with clinic workflows and processes.