Qualitative insights into how men with low-risk prostate cancer choosing active surveillance negotiate stress and uncertainty

Abstract

BackgroundActive surveillance is a management strategy for men diagnosed with early-stage, low-risk prostate cancer in which their cancer is monitored and treatment is delayed. This study investigated the primary coping mechanisms for men following the active surveillance treatment plan, with a specific focus on how these men interact with their social network as they negotiate the stress and uncertainty of their diagnosis and treatment approach.MethodsThematic analysis of semi-structured interviews at two academic institutions located in the northeastern US. Participants include 15 men diagnosed with low-risk prostate cancer following active surveillance.ResultsThe decision to follow active surveillance reflects the desire to avoid potentially life-altering side effects associated with active treatment options. Men on active surveillance cope with their prostate cancer diagnosis by both maintaining a sense of control over their daily lives, as well as relying on the support provided them by their social networks and the medical community. Social networks support men on active surveillance by encouraging lifestyle changes and serving as a resource to discuss and ease cancer-related stress.ConclusionsSupport systems for men with low-risk prostate cancer do not always interface directly with the medical community. Spousal and social support play important roles in helping men understand and accept their prostate cancer diagnosis and chosen care plan. It may be beneficial to highlight the role of social support in interventions targeting the psychosocial health of men on active surveillance.

Factors Influencing Men's Choice of and Adherence to Active Surveillance for Low-risk Prostate Cancer: A Mixed-method Systematic Review

“…Mishra at al [47] described the views of patients and their families in internet conversations over a 10-year period; they found that access to unbiased information was associated with more patients opting for AS. Four other studies [32, 40, 42, 46] reported similar results. Goh et al [50] found that men who perceived they were receiving consistent information felt more in control of their decision-making and experienced a greater degree of satisfaction and certainty in choosing AS.…”

“…This is important to acknowledge in the context of AS where monitoring includes regular re-biopsy. However, several studies have described the process of repeat testing on AS as a reassuring process [40, 42, 46].…”

“…Goh et al [50] found that men who perceived they were receiving consistent information felt more in control of their decision-making and experienced a greater degree of satisfaction and certainty in choosing AS. Three other studies concluded that access to educational resources, in addition to professional and peer support (supported self-management), optimised the treatment selection process and empowered men “to take control” of their diagnosis and of their choices thereafter [42, 47, 55]. However, in contrast Taylor and colleagues [28] found that even when patients had access to information and support, men who choose AS were less likely to access these resources than those men choosing radical treatment.…”

Determinants for choosing and adhering to active surveillance for localised prostate cancer: a nationwide population-based study

“…This highlights the responsibility of the treating physician, not only directed towards the patients but also to their significant others, to facilitate an informed treatment decision. A recently published qualitative study by Mader et al stating that spousal and social support play important roles in helping men understand and accept their PC diagnosis and chosen care plan 24. In our study, 18% of men saw both a urologist and a clinical oncologist but this did not affect the choice of treatment.…”

Patient and provider experiences with active surveillance: A scoping review

“…Numerous supportive care interventions are available to help cancer patients or survivors manage common problems such as stress and uncertainty [ 101 , 102 ]. For men with prostate cancer on AS, spousal and social support were important in helping them to cope with their chosen care plan [ 103 ]. Thus, follow-up for AS patients could be improved by assessing QoL, and providing or linking patients experiencing stress related to illness uncertainty with various forms of supportive care.…”