Abstract
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.
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Acknowledgments
We would like to acknowledge the invaluable collaboration of Tricia Landis. Dr. Pollack’s salary is supported by the National Cancer Institute and the Office of Behavioral and Social Sciences (K07 CA151910). This funding also supported incentives for study interviewees. Otherwise, there was no source of funding for this study.
Conflicts of Interest
Dr. Berger, Mr. Yeh, and Dr. Pollack report no conflicts of interest. Dr. Carter is a faculty member of the Brady Urological Institute, which administers the Johns Hopkins Active Surveillance program.
Author Contributions
Dr. Berger, Dr. Pollack, and Mr. Yeh conceived the study and its design, collected and analyzed the data, and drafted the manuscript. Dr. Carter provided the data source. All authors critically reviewed the manuscript for scientific content. Dr. Berger is the study guarantor.
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Berger, Z.D., Yeh, J.C., Carter, H.B. et al. Characteristics and Experiences of Patients with Localized Prostate Cancer Who Left an Active Surveillance Program. Patient 7, 427–436 (2014). https://doi.org/10.1007/s40271-014-0066-z
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DOI: https://doi.org/10.1007/s40271-014-0066-z