Characteristics and experiences of patients with localized prostate cancer who left an active surveillance program

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

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

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.

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.

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.