Men's Experiences on Active Surveillance: From Diagnosis to Discontinuation

Abstract

Over 1.4 million men were diagnosed with prostate cancer worldwide in 2020. Due to increased early testing and detection, higher numbers are being diagnosed with low risk, localised prostate cancer. Active surveillance is the recommended treatment option for patients with low risk, localised prostate cancer, as it provides patients the opportunity to delay definitive treatments until clinically necessary whilst actively monitoring progression. However, there is no global consensus on eligibility criteria, best practice for management, or triggers for discontinuation, and therefore uptake, practice, and patient experiences may vary greatly across clinics and countries. In order to (a) understand patient experiences during active surveillance, (b) inform changes to active surveillance management that align with the needs of patients, and (c) identify critical research areas, consideration of the individual, social and ecological factors that influence patient experiences is required. To reach this aim, this thesis includes four studies using a range of methodologies to investigate patient experiences from diagnosis to active surveillance discontinuation. A fifth study focusing on enhancing methodology in this research domain is also included. Study One used qualitative methods to explore patient and partner experiences after low risk localised prostate cancer diagnosis as they navigated the treatment decision between active surveillance and definitive treatment. Study Two systematically reviewed the literature on patients’ unmet supportive care needs during active surveillance. Data for studies Three and Four were collected together using a mix of methodologies (quantitative survey and qualitative interviews). Given the outcomes of the systematic review (Study Two), in Study Three we investigated the unmet supportive care needs and psychological wellbeing of patients during active surveillance. In Study Four, we explored the personal and/or medical reasons patients discontinue active surveillance and move to definitive treatment. Finally, Study Five was a randomised trial embedded within Studies Three and Four to examine the influence of different unconditional monetary incentives on survey response rates. This body of research demonstrated that whilst patients on active surveillance generally report positive experiences and outcomes, a significant proportion report unmet supportive care needs across informational, sexual, physical, psychological, and patient care domains. Patients on active surveillance frequently report experiencing fear of cancer progression, appear to be greatly influenced by a variety of factors when navigating treatment decision (both at diagnosis and prior to discontinuation), and report uncertainty about active surveillance and their future. In addition, we observed that prostate cancer patients are no more likely to respond to long surveys when provided a larger unconditional monetary incentive ($20AUD) than a smaller unconditional monetary incentive ($10AUD). Further research to inform the development of supportive care interventions which directly address patient needs, align with their preferences, and consider their perspectives, is essential for improving active surveillance uptake, adherence, and overall experience for both patients and their partners/close allies. Doing so will require a strong engagement in research, which may be improved by using a variety of engagement strategies such as unconditional incentives, though further research is required.