‘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 localized 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: Qualitative descriptive research design. Interviewed participants were men, and partners of men, who had either chosen radical treatment immediately following diagnosis, or who had been on AS for at least three 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 up-dated decisional support information/aids incorporating men's values are imperative.

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

“…Study characteristics can be found in Table . Three studies were from the United States, two from Canada, and one each from the United Kingdom, Sweden, and Australia. Sample sizes of AS patients in cross‐sectional studies ranged from three to 431 (M = 169, SD = 229.6) and in qualitative studies ranged from four to 37 (M = 20.8, SD = 11.2).…”

“…Information on PCa, signs of progression, future treatment options, and adjuvant treatments (such as diet and exercise) were reported as inadequately provided by the treating physicians and/or unavailable to patients. For instance, one man in Loeb et al's study explained he wanted to “know what progresses the cancer” as he currently felt “ignorant about the whole thing.” Several participants in the qualitative studies also reported that information regarding AS was too limited. Loeb et al noted men often needed more information regarding the follow‐up protocol, such as the ideal frequency and reason for performing tests.…”

“…Participants in four qualitative studies reported that information on PCa and AS was contradictory, confusing, overwhelming, and inconsistent. Those in Loeb et al's study were often confused by their prognosis and the purpose/results of tests.…”

“…One qualitative study discussed men's unmet emotional and psychological needs while on AS. O'Callaghan et al found that a lack of emotional support coupled with unmet informational needs appeared to contribute to feelings of depression, irritability, anxiety, fear, worry, embarrassment, and stress in men on AS. For instance, one man summed up his AS experience as “death, dying,” awaking some mornings “really depressed.”…”

Quality of Patient-Provider Communication Among Cancer Survivors: Findings From a Nationally Representative Sample

“…Others have reported that these men may be more likely to perceive worse care compared with those undergoing treatment, although on the basis of patient and physician characteristics, the findings are mixed. 45-47 …”