Purpose: Although controversy about routine screening for prostate cancer (PC) in asymptomatic men continues, there is a general consensus among leading health agencies to promote informed decision making (IDM) through a balanced discussion of the pros and cons of screening. 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. This project assessed treated PC patients’ perceptions of IDM on screening and perceived barriers to promoting IDM among unaffected FDRs (e.g., brothers and sons).
Method: We conducted four focus groups separated by ethnicity with 24 survivors (14 Black/African Americans; 10 whites) within five years of completing definitive therapy: prostatectomy (50%), radiation therapy (50%). Median age was 63 years and 50% had a FDR with PC (21% father; 16% brother; 13% father and brother). 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: Virtually all patients preferred to be directly involved in informing their FDRs about PC diagnosis and to be the first to discuss screening with FDRs. Patients felt the CDC decision guides could effectively facilitate these discussions with FDRs. However, patients held strong pro-screening views and found the screening controversy and IDM perspective counterintuitive. Survivors particularly found the pros and cons section of the CDC guides confusing and contradictory to their own desire to promote screening for FDRs, a population at increased risks of PC. Most patients were highly motivated to “protect” their FDRs through information sharing and education. However, several barriers to IDM were identified, 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.
Conclusion: Patients’ pro-screening position is juxtaposed to the professional recommendation of IDM, thus presenting challenges for achieving IDM in this setting. Findings have implications for development of a robust, innovative decision aid for FDRs that deconstructs the IDM message into simpler salient pointer messages, enhances information sharing within the patient/FDR family unit and addresses the IDM barriers and limitations of the existing general decision aids.
Candidate for the Lee B. Lusted Student Prize Competition