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

Abstract

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.

Associations between self‐reported physical activity, quality of life, and emotional well‐being in men with prostate cancer on active surveillance

“…AS protects against QOL impairments relative to curative treatment for PCa. However, a small proportion of men may experience disease‐related psychological morbidity early on during AS, which can negatively impact overall QOL . In men undergoing curative treatment for PCa, higher PA levels are associated with less distress and greater QOL .…”

“…We found that 13.6% of patients exhibited low EWB early on AS. Previous literature suggests that psychological morbidity can impact treatment decisions in men with low‐risk disease . Therefore, it is important for health care practitioners to identify men with low EWB early on AS and subsequently recommend strategies (eg, PA) to foster their support.…”

“…Indeed, evidence from a systematic review corroborates favorable health‐related QOL in men receiving AS . While many men with low‐risk disease have relatively stable and excellent psychological well‐being during AS, some living with untreated cancer can experience significant psychological morbidity (eg, fear of disease progression, worry, and anxiety) which can collectively impair men's overall psychological well‐being and QOL …”

Quality of Life Changes in Acute Coronary Syndromes Patients: A Systematic Review and Meta-Analysis

“…However, our review did not find any evidence of the use of QoL assessment within the treatment-strategy-decision-making process for ACS patients. This is despite studies in other disease areas emphasising the importance of, and recommending the, measuring QoL for decision making for therapeutic preferences [63][64][65][66][67][68][69][70]. For example, Sutherland and Till [63] emphasised the importance of assessing QoL at different levels of decision making: (i) at micro-level to help ACS patients participate in the decision making process relating to their preferred treatment/s), (ii) at meso-level to benefit groups at agency, institution or regional network level (e.g., teams of cardiologist may take part in developing protocols for management of ACS or small agencies working on ACS management), and (iii) at macro-level to benefit the population in general (e.g., the baseline data about QoL may help to the government to design population-level policy).…”

Investigating the impact of open label design on patient‐reported outcome results in prostate cancer randomized controlled trials

“…[5][6][7] The latter is therefore also an important factor when treatment choices have to be made. [8][9][10][11] Both the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) highly endorse the use of patient-reported outcomes (PROs) in this context by requiring the integration of the patients' perspective through better reporting of adverse events and HRQoL in randomized controlled trials (RCTs). 12,13 However, several systematic reviews have highlighted that a high proportion of RCTs including PROs poorly report on these measurements, with missing information being very common.…”