PROSTATE CANCER SCREENING CONTROVERSY: A CHALLENGE FOR DECISION AIDS FOR MEN AT HIGH RISK

Purpose: The controversy about routine screening for prostate cancer (PC) in asymptomatic men continues.  However, there is consensus among health agencies to promote informed decision making (IDM) and shared decision making (SDM) through discussions of the pros and cons of screening between patients, family members and healthcare providers. Survivors are a critical link in disclosure of diagnosis and discussions of risk with their unaffected first-degree relatives (FDRs), a group at increased risk. Consequently, many FDRs’ decision to be screened may be biased due to the experience of their cancer surviving relative, thwarting the efforts of decision aids. This project assessed treated PC patients’ and unaffected FDRs’ (brothers and sons) perceptions of IDM on screening and perceived barriers to promoting IDM among unaffected FDRs.

Method:  We conducted four focus groups with 24 survivors within five years of completing definitive therapy and 22 individual interviews with unaffected FDRs.  Participants reviewed the Centers for Disease Control and Prevention (CDC) PC screening decision guide and were asked open-ended questions to evaluate their perspectives on IDM for FDRs.

Result: No differences were found between patients and FDRs.  Survivors and FDRs found the PC screening debate and IDM recommendations to be complex and counterintuitive. They placed higher importance on screening instead of IDM—arguing that screening is imperative for early detection and has no associated harms.  Several barriers to IDM were identified by both patients and FDRs, including the confusing, ambivalent and complex message of decision making; pre-existing poor communication between some patients and their FDRs; FDRs’ fear and avoidance of the topic; and lack of a step-by-step guide to simplify the IDM process, and how to speak to healthcare providers about IDM.

Conclusion: With involvement of clinicians, survivors and FDRs, we produced an innovative decision aid (DVD) that deconstructs the screening controversy and IDM/SDM into simple concepts focusing on enhancing critical literacy. The DVD also outlines both the potential benefits and potential consequences (harms) that may result from either decision—to screen or not to screen. The decision aid takes a family-centered approach to facilitate information sharing within the patient/FDR family unit and features survivors and FDRs providing directed advice for other men to effectively engage in beneficial discussions with their healthcare providers.  A pilot study evaluating impact of the decision aid is underway.