Understanding reasons for non-adherence to active surveillance for low-intermediate risk prostate cancer

BACKGROUND: Active surveillance (AS) is recommended by most national medical organizations as the preferred treatment option for men with low-risk prostate cancer (PCa). However, studies report that up to one third of men on AS dropout within 5 years, without evidence of disease progression. Despite high dropout rates, few studies have purposively explored the opinions and experiences of men who discontinued AS. The aim of this study was to gain insight into the reasons why some men on AS for PCa discontinue active treatment without evidence of disease progression. METHODS: Semi-structured interviews were undertaken with 14 men from diverse socio-cultural backgrounds who had been on AS for PCa but dropped out of surveillance to undergo active treatment without signs of disease progression. Purposive sampling to reach data saturation was used to select participants based on their experience of AS and willingness to share their experiences. Interviews were transcribed and analysis undertaken in an inductive thematic manner. RESULTS: The following themes arose from interviews as factors that potentially influence adherence to AS: men’s experience at diagnosis and follow-up consultations, involvement in shared decision-making, the extent of supportive care and information, administrative procedures and support from partner and peers. A poor experience during diagnosis could adversely influence long-term adherence to AS, given the same diagnostic tests are frequently repeated. The provision of consistent information and support while on AS, similar to that offered to men undergoing radical treatment, was also highlighted as being important to increase confidence in the process. CONCLUSIONS: Effective communications skills among health professionals, aimed at building trust in patient-clinician relationships, providing opportunities for shared decision-making and developing self-efficacy, along with structured information and support, are key to enhancing long-term adherence to AS.