Quality of life in active surveillance and the associations with decision-making—a literature review

Several studies have been conducted on the quality of life (QoL) in men with low risk prostate cancer (PCa) who choose active surveillance (AS). While recent reviews have shown a lack of consistency among the available QoL-studies, a few key points have been identified, including decision-making (DM)-related issues and their potential effect on QoL. The importance of this theme has also been recently highlighted by the international task force of the European School of Oncology. However, to our knowledge, there are no studies that have specifically marshalled scientific knowledge on the association between DM and QoL among men with low-risk PCa undergoing AS. We performed a literature review to fill this gap, taking a systematic approach to retrieving and selecting articles that included both DM and QoL measures. Among the 272 articles retrieved, we selected nine observational, quantitative articles with both DM and QoL measures. The most considered DM aspects within these studies were decisional conflict and preference for the patient’s role in the DM process, as well as health-related QoL aspects. The studies included 42 assessments of the relationship between an empirical measure of DM and an empirical measure of QoL. Among these assessments, 23 (55%) were both positive and significant. They mostly concerned the relationship between patient-related (decisional self-efficacy, decisional control and knowledge) and external (presence of social support, collaborative role within the DM process, and influence of different physicians) DM aspects, as well as the QoL after choice. The findings of these studies revealed key challenges to research and clinical practice related to DM and QoL in AS. These include adopting a person-centred perspective where clinicians, caregivers and their interactions are also included in evaluations and where the psychosocial existential experience of individuals within the DM and AS journey is considered. Much more attention needs to be paid to the DM process after diagnosis, as well as to all the other moments where patients may have to or want to review their decision. Healthcare professionals play a key role in enabling men to make informed decisions and to take care of their health and well-being during AS. There is still work that needs to be done in training healthcare professionals from different disciplines to work together in a model of shared DM and AS tailored to the needs of low-risk PCa patients and their family members.