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

Association between radiation therapy, surgery, or observation for localized prostate cancer and patient-reported outcomes after 3 years.

BackgroundMultiple guidelines seek to alter rates of prostate-specific antigen (PSA)-based prostate cancer screening. The costs borne by payers associated with PSA-based screening for men of different age groups—including the costs of screening and subsequent diagnosis, treatment, and adverse events—remain uncertain. We sought to develop a model of PSA costs that could be used by payers and health care systems to inform cost considerations under a range of different scenarios.MethodsWe determined the prevalence of PSA screening among men aged 50 and higher using 2013-2014 data from a large, multispecialty group, obtained reimbursed costs associated with screening, diagnosis, and treatment from a commercial health plan, and identified transition probabilities for biopsy, diagnosis, treatment, and complications from the literature to generate a cost model. We estimated annual total costs for groups of men ages 50-54, 55-69, and 70+ years, and varied annual prostate cancer screening prevalence in each group from 5 to 50% and tested hypothetical examples of different test characteristics (e.g., true/false positive rate).ResultsUnder the baseline screening patterns, costs of the PSA screening represented 10.1% of the total costs; costs of biopsies and associated complications were 23.3% of total costs; and, although only 0.3% of all screen eligible patients were treated, they accounted for 66.7% of total costs. For each 5-percentage point decrease in PSA screening among men aged 70 and older for a single calendar year, total costs associated with prostate cancer screening decreased by 13.8%. For each 5-percentage point decrease in PSA screening among men 50-54 and 55-69 years old, costs were 2.3% and 7.3% lower respectively.ConclusionsWith constrained financial resources and with national pressure to decrease use of clinically unnecessary PSA-based prostate cancer screening, there is an opportunity for cost savings, especially by focusing on the downstream costs disproportionately associated with screening men 70 and older.Electronic supplementary materialThe online version of this article (10.1186/s12894-018-0344-5) contains supplementary material, which is available to authorized users.