Characteristics and Experiences of Patients with Localized Prostate Cancer Who Left an Active Surveillance Program

Background: Understanding the experiences of men leaving active surveillance programs is critical to making such programs viable for men with localized prostate cancer.

Results: Of 1,159 men in active surveillance, 9 % self-elected to leave. In interviews with a sample of 14 men who self-elected to leave, uncertainty involved in active surveillance participation, existence of personal criteria—distinct from providers’ clinical criteria—and fear of cancer were important factors in decisions to leave.

Conclusion: Men leaving active surveillance were motivated by a number of factors, including patient-defined criteria, which might differ from clinical recommendations. To ensure active surveillance participation, it may be important to address cancer-related anxiety and personal criteria underlying patient decisions.

Objective: To generate hypotheses about the factors that influence patients’ decisions to leave an active surveillance program.

Methods: Using data from the Johns Hopkins active surveillance cohort, bivariate analyses and multinomial regression models examined characteristics of men who self-elected to leave, those who stayed in the program, and those who left because of disease reclassification. We interviewed patients who self-elected to leave.