'What is this active surveillance thing?' Men's and partners' reactions to treatment decision making for prostate cancer when active surveillance is the recommended treatment option

Abstract

Objective: In the past decade, localised prostate cancer (LPC) management has been shifting from three radical treatment options (radical prostatectomy, external beam radiotherapy, or brachytherapy) to also include active surveillance (AS). This study examines men with LPC and partners' experiences of choosing between AS and radical treatments, and their experiences of AS when selected.

Methods: A qualitative descriptive research design was used. Interviewed participants were men, and partners of men, who either had chosen radical treatment immediately following diagnosis or had been on AS for at least 3 months. AS was the recommended treatment. Transcribed interviews were thematically analysed and inter-rater reliability integrated.

Results: Twenty-one men and 14 partners participated. Treatment decisions reflected varied reactions to prostate cancer information, regularly described as contradictory, confusing, and stressful. Men and partners commonly misunderstood AS but could describe monitoring procedures. Partners often held the perception that they were also on AS. Men and partners usually coped with AS but were sometimes encumbered by treatment decision-making memories, painful biopsies, ongoing conflicting information, and unanswered medical questions. Radical treatment was selected when cancer progression was feared or medically indicated. Some preferred doctors to select treatments.

Conclusions: To reduce distress frequently experienced by men diagnosed with LPC and their partners during treatment decision making and ongoing AS monitoring, the following are needed: improved community and medical awareness of AS; consistent information about when radical treatment is required; and consistent, unbiased information on treatment options, prognostic indicators, and side effects. Regularly updated decisional support information/aids incorporating men's values are imperative.

Keywords: active surveillance; cancer; oncology; prostate cancer; qualitative research.