Prostate cancer is the second most common cancer in men worldwide, affecting one in eight men in the UK (World Cancer Research Fund, 2018; Prostate Cancer UK, 2019a). In the UK, prostate cancer was the most common cancer diagnosed in males in 2017, a total of 41 201 cases were registered—accounting for one in four malignant cancer recordings (Office for National Statistics, 2019).
Although there is no screening programme for prostate cancer in the UK, there is an informed choice programme in place for healthy men aged 50 and older who wish to ask their GP about prostate-specific antigen score (PSA) testing. It is possible to detect non-progressive cancers through screening, leading to over diagnosis and over-treatment (Bell et al, 2015). Although most men diagnosed with prostate cancer will die with, rather than of, the disease, an increase in PSA screening has meant an increase in cancer diagnoses and use of invasive treatment to remove it (Bell and Kazanjian, 2011).
National Institute for Health and Care Excellence (NICE) guidance advocate the use of a protocol released in 2014 (NICE, 2014) for active surveillance, for low-risk cancer and those who do not wish to undergo immediate radical treatment. The protocol (NICE, 2021a) is a way of monitoring slow-growing cancer with 3-4-monthly PSA tests during the first year following diagnosis, with subsequent testing—which may include biopsy—at increased intervals if there has been no disease progression. Through active surveillance patients can avoid undergoing radical treatments, including prostatectomy and radiotherapy, which can lead to side effects such as loss of sexual function, urinary incontinence and gastrointestinal complications (NICE, 2021b). Meanwhile, survival rates and low likelihood of metastases development in favourable-risk men following active surveillance are promising (Tosoian et al, 2015). A man can also choose to stop active surveillance at any point and elect to undergo active treatment (Prostate Cancer UK, 2019b).
Ruane-McAteer et al's (2017) systematic literature review gathered more than 20 papers reporting on the psychological impact of active surveillance in men, uncovering key themes including anxiety, depression and uncertainty. But while many quantitative studies point toward favourable wellbeing, qualitative insight suggests men consider the method a ‘dangerous wait’ and feared it could be ‘too late’ before severe disease progression was detected (Kazer, 2012:83; Ruane-McAteer, et al, 2017). One quantitative study also indicated that almost a quarter of its participants had clinical anxiety and more than 12% had clinical depression (Watts et al, 2015).
The aim of this article is to review the literature regarding the psychological effects of active surveillance in prostate cancer, before exploring how nurses can manage these effectively. This aims to answer the questions:
- How significant are the psychological effects associated with active surveillance
- How might the nurse devise the best strategies to manage them?
Methods
The PRISMA flow diagram (Figure 1) illustrates the process used within this literature review to screen search results using the eligibility criteria (Moher et al, 2009). The search was carried out using the CINAHL Complete, Medline Complete and PsycINFO databases to identify material published between October 2015 and March 2018. Chiefly, this time frame was chosen to provide an update on the Ruane-McAteer et al (2016) literature review, which covers similar ground to this article, and which included studies from ‘all-time’ to September 2015.
Figure 1. PRISMA flow diagram.
The search strategy used the following terms: Prostat* N4 (carcinoma OR cancer OR oncology OR neoplasm*) AND watch* OR ‘active surveillance’ AND psycholog* OR ‘quality of life’ OR emotion* OR stress* OR anxi* OR wellbeing OR uncertain* OR distress* OR disrupt* OR tolera* OR cop* OR depress*.
The final articles were selected using the following inclusion criteria: peer reviewed, non-interventional studies, primary research, written in English, in humans, concerning low-risk prostate cancer, psychological impact and active surveillance. Studies comparing active surveillance with other treatment pathways were also included. For the purpose of generalisability, literature from across the world was included.
Findings
Eight quantitative papers are included in this review; seven prospective cohort studies (de Cerqueira et al, 2015; Parker et al, 2016; Tan et al, 2016; Taylor et al, 2018; Sciarra et al, 2018; Egger et al, 2018; Marzouk et al, 2018) and one retrospective cross-sectional study (Matthew et al, 2018). The participant follow-up of the cohort studies, by definition longitudinal, ranged from 10 months to 10 years (Taylor et al, 2018; Egger et al, 2018). The cross-sectional study (Matthew et al, 2018) recruited patients receiving treatment between January 2003 and December 2008. Study sizes varied from 30 (de Cerqueira et al, 2015) to 1057 participants (Taylor et al, 2018). Of the included studies, five comprised comparison groups, including patients receiving radical prostatectomy (RP), external beam radiotherapy (EBRT), brachytherapy and focal cryotherapy (FC) (de Cerqueira et al, 2015; Matthew et al, 2018; Sciarra et al, 2018; Taylor et al, 2018; Egger et al, 2018). Across the eight articles, the pooled number of men receiving active surveillance treatment was 1542.
Methods of data collection involved self-completed questionnaires (de Cerqueira et al, 2015; Sciarra et al, 2018; Marzouk et al, 2018), postal questionnaires (Matthew et al, 2018), telephone or web-based interviews (Taylor et al, 2018) and in-clinic and web-based questionnaires (Tan et al, 2016). Parker et al (2015) and Egger et al (2018) did not specify how their study questionnaires were administered. Data were largely collected using pre-validated questionnaires, typically asking identical questions in the same format (Boynton and Greenhalgh, 2004), with standardised scales. Half of the studies assessed the broad psychological and quality of life impact of prostate cancer treatment (de Cerqueira et al, 2015; Sciarra et al, 2018; Taylor et al, 2018; Egger et al, 2018); others made specific enquiry into key stressors associated with active surveillance, including ‘anxiety’, ‘uncertainty’ and ‘distress’ (Parker et al, 2016; Tan et al, 2016; Matthew et al, 2018; Marzouk et al, 2018).
Research was undertaken in the USA, Canada, Australia, Italy and South America. The Mixed Methods Appraisal Tool (MMAT) (Hong et al, 2018) was used to critically appraise the studies.
Anxiety
Taylor et al (2018) is the largest included cohort study, comprising 645 participants receiving active surveillance as treatment for prostate cancer, and 412 men in receipt of active treatment. Its findings show that, while baseline prostate cancer-related anxiety corresponded between the two groups, those on active surveillance reported significantly higher anxiety at follow-up when compared to men in the active treatment group which, conversely, reported a reduction. These findings relate to specific prostate-related anxiety, using items from the Health Worry and Cancer Control subscales (Clark et al, 2003), which are particularly relevant for men with untreated prostate cancer, including PSA assessment, which is integral to the active surveillance pathway (Taylor et al, 2018). Meanwhile, Patient-Reported Outcomes Measurement Information System (PROMIS) scores (https://www.healthmeasures.net/explore-measurement-systems/promis), which in part assess generalised anxiety, showed at baseline those with raised anxiety chose to undergo treatment and demonstrated improved scores at follow up, in comparison to those on active surveillance for whom anxiety scores remained stable (Taylor et al, 2018). In the other research studies, this apparent correlation between prostate-specific anxiety and active surveillance is not so clear; Tan et al (2016) did not observe a relationship specifically between PSA testing and anxiety while Marzouk's et al's (2018) investigation provided some corroboration by reporting moderate risk of cancer-specific anxiety within the first year of their study.
Tan et al (2016) had a low attrition rate, with 58% of study participants responding to two or more surveys with a median follow-up of 12 months, compared with Taylor et al (2018), in which 93% participants completed follow-up assessment. Tan et al (2016) featured specific prostate cancer and/or generalised anxiety heavily within their study, which observed only men treated with active surveillance; finding that 17 (14.3%) and 18 (15.1%) of the 119 men reported these factors, respectively. Furthermore, Parker et al (2015) found anxiety significantly decreased at 18 and 30 months after study entry. However, Tan et al (2016), using longitudinal analysis, found anxiety outcomes showed no meaningful change over time. It is difficult to state conclusively, however, to what extent anxiety is inherently concerned with active surveillance, given these studies do not include comparator groups.
Matthew et al (2018), using a retrospective cross-sectional design, observed men who received RP as a comparison group and reported no significant difference in anxiety when measured against active surveillance. In contrast, men receiving active surveillance reported ‘moderate worsening’ at the 1-month interval in Sciarra et al (2018:16), and subsequent improvement until the 12-month interval. This was compared with those who underwent RP, who showed ‘stable’ values during 12 months of follow up, and radiotherapy, which showed ‘rapid significant worsening’ of anxiety at the 1-month interval, with small improvement at the 6- and 12-month follow up stages (2018:16). The cross-sectional design of Matthew et al (2018) may account for its contradictory conclusions because it does not convey fluctuations in patient experience of active surveillance.
The scope of a more longitudinal approach in capturing variations in anxiety is demonstrated in Marzouk et al (2018), which used prostate-specific evaluation of patients on active surveillance over a median of 3.7 years; from time of initiation to completion of the last survey. To produce inferences from their data reflecting a longer time period, the authors used statistical testing for significant association between the date of active surveillance enrolment and level of anxiety. The result showed the 29% risk of anxiety at 1 year decreased by 14% after 7.5 years. This decrease in anxiety over time echoes findings from other studies contained in this review (Parker et al, 2016; Sciarra et al, 2018). Marzouk et al (2018) used a more generalised definition of anxiety than the other studies, which captured ‘any form’ of prostate cancer-related anxiety (2018). The authors found that this more general definition represented the feelings of more men, whereas those studies which had more specific criteria, represented the feelings of fewer men.
Fear of recurrence and illness uncertainty are sub-themes that can be discussed under the heading of anxiety. Although Egger et al (2018) did not find significant between-group differences in reporting of psychological outcomes, including anxiety, a key finding was that those who remained on active surveillance or watchful waiting experienced a ‘worse fear of recurrence’ than those who elected active treatment (2018). Furthermore, Parker et al (2015) found illness uncertainty and anxiety were positively associated with ‘fear of progression’ (2015) in active surveillance patients. In analyses of lifestyle disruption and health worry, Matthew et al (2018) found active surveillance patients worried more about future health (active surveillance: 55.1%; RP: 44.9%) and dying (active surveillance: 57.8%; RP: 42.2%) after beginning treatment (Matthew et al, 2018).
Depression
Although a large portion of the included studies tested for depression, many did not find significant association between active surveillance and depression. Egger et al (2018) found active surveillance/watchful waiting was unlikely to have a major detrimental impact on mental health and found no significant between-group differences when compared to active treatments. Consistent with these findings, Sciarra et al (2018) concluded that patients on active surveillance remained below the threshold for a definite diagnosis of depression. However, the study also states that participants on active surveillance showed a ‘progressive significant worsening’ of scores from 1-month to 12-month intervals, which reached scores reported by patients receiving radiotherapy (Sciarra et al, 2018). No one in either study was categorised in the ‘definite’ range for depression. Egger et al (2018) grouped those on active surveillance with those receiving watchful waiting, a more conservative management of prostate cancer with fewer tests. It is plausible those on watchful waiting might experience differing psychological symptoms, particularly those associated with PSA testing (Ruane-McAteer, et al, 2017); the study does not clarify how many patients were on watchful waiting compared to active surveillance. This makes Egger's study less pertinent in answering the review's question because men following watchful waiting, a symptom-management approach, might by impacted by mental health issues intrinsic to living with incurable cancer.
Matthew et al (2018) found there were no significant differences between those treated with active surveillance and those receiving RP, with both groups falling below the threshold for mild depressive symptoms. Scores from a 20-item questionnaire evaluating psychological wellbeing affect demonstrated that, as a whole, participants experienced ‘high energy’, ‘full concentration’ and ‘pleasurable engagement’ (Matthew et al, 2018). Taylor et al (2018) drew somewhat more substantial association between prostate cancer and depression. Although at baseline, those considering active treatment were more likely than those on active surveillance to report raised levels of anxiety and depression (P<.001), evidence did not continue to support this between-group difference at follow-up. Nonetheless, Taylor et al (2018) found that PROMIS scores showed a minority of men in both active surveillance and active treatment groups reported moderate-to-severe depression at both baseline and follow-up intervals. The authors propose their findings, which suggest higher depression than previous studies, were derived in part due to the reporting propensities of a younger participant group. Indeed, with a mean age of 62.4 years, participants on active surveillance in Taylor et al's study (2018) were the youngest in the included studies which assessed for depression.
In de Cerqueira et al's study (2015), which used Beck scales to measure depression (https://beckinstitute.org/tools-and-resources/professionals/patient-assessment-tools/), participants in the active surveillance group reported a slightly higher mean score of 8.64 compared with brachytherapy (6.67) and focal cryoablation (6.50) at a median follow-up of 18 months (de Cerqueira et al, 2015). Nonetheless, all groups remained in the minimal class (0-9) for depression, further supporting the evidence to suggest a weak correlation between active surveillance and depression. However, this study more extensively discusses hopelessness. Those undergoing focal cryoablation and brachytherapy presented minimum hopelessness scores. These are ‘low-toxicity’ approaches that follow a protocol (de Cerqueira et al, 2015). Active surveillance patients presented a higher ‘mild’ score (de Cerqueira et al, 2015). Nevertheless, at 30 patients, the sample size of this study is small.
Quality of life
Quality of life (QoL) is presented as a broadly physical outcome in the included articles, but where it is investigated in conjunction with psychological impact, it gives weight to answering the research question.
This is particularly true when researchers have looked at the correlation between emotional and functional outcomes.
De Cerqueira et al (2015) used the comprehensive SF-36 tool for assessing patient's QoL on active surveillance, brachytherapy and focal cryoablation; the lower the score out of 100, the worse the disability. Overall, mean values for active surveillance were lower than those for focal cryoablation and brachytherapy, with the lowest of 50.09 reported for general health. All three treatments suggested a poor outcome for general health, which researchers found correlated strongly with level of hopelessness; the authors suggest a causal relationship between ‘distress over disease’ and ‘deterioration’ of the patient's perception of their ability to function (de Cerqueira et al, 2015). Furthermore, mean role limitation due to physical health score for active surveillance patents was 52.27, in comparison to focal cryoablation (87.50) and brachytherapy (88.89), which may prove significant for this review's aim, which sought to address the psychological management of prostate cancer's impact (de Cerqueira et al, 2015).
Parker et al (2015) also explored the relationship between psychological and functional outcomes in those on active surveillance by analysing whether illness uncertainty and anxiety anticipated a reduction in prostate-specific and general QoL and an increase in fear of progression. This examination goes further than Cerqueira et al (2015) with Parker et al finding illness uncertainty and anxiety were significantly associated with urinary, bowel, sexual and hormonal symptoms, as well as general QoL symptoms. Thus, the higher the level of illness uncertainty and anxiety, the lower the QoL measure. However, these findings must be viewed in context; Parker et al (2015) found overall that men on active surveillance reported high QoL scores that remained stable at each observation post-prostate cancer diagnosis. This was with the exception of sexual function, which decreased over time to 30 months, a result, the authors suggested, that could be linked with the impact of ongoing biopsies. Furthermore, age and BMI were linked with lower QoL scores.
Although Parker et al (2015) relied on comparing their study to research conducted by other authors, Taylor et al (2018) was able to state more conclusively where active surveillance patients sit in regard to QoL in contrast to active treatment. The study's results show the active surveillance group reported better follow-up scores than the active treatment group in the domains of urinary incontinence, urinary obstruction, sexual functioning and bowel problems. This is perhaps not surprising given the non-invasive nature of the active surveillance pathway, and, indeed, this finding was attributed to the poorer prostate functioning of the treatment group. The study's authors are continuing to follow the sample group to analyse the QoL of those on active surveillance over a longer time period (Taylor et al, 2018). It is conceivable that, as prostate cancer symptoms increase, there would be a more progressive deterioration. Patients on active surveillance in Egger et al's (2018) study also reported more favourable scores, particularly regarding bowel problems and urinary incontinence, when compared with active treatment. Largely, however, both psychological and health-related QoL outcomes remained similar between groups.
Findings summary
The first aim of this literature review was to ascertain the significance of the psychological effects of active surveillance, The review found there is some evidence to suggest that feelings of anxiety associated with active surveillance may increase in the short term, in comparison to those receiving active treatment. This anxiety, however, may be likely to decrease over a longer time period. The evidence suggests that the conservative nature of active surveillance may provoke feelings of uncertainty and fear. The findings show that, while active surveillance patients are likely to have better physical functioning than those who received active treatment, their psychological QoL may be poorer. The literature on depression and active surveillance indicates that, if patients are to experience depressive symptoms, they will largely be mild in nature or, perhaps, precursors such as hopelessness. This is not to ignore, however, that a small number might experience significant depression.
Discussion
A primary limitation of this literature review is that the search parameters did not generate any qualitative studies. It could be suggested that psychological impact cannot be adequately measured using rigid tools; therefore, studies might benefit from more unstructured interviews to gain new knowledge (Ellis, 2019). Qualitative studies could shed light on what triggers anxiety, depression and hopelessness, giving nurses insight into what experiences may intensify these emotions for men. To bridge this gap in the literature concerning prostate cancer and active surveillance, a mixed methods study is being undertaken (Ruane-McAteer et al, 2017).
A further concern, which may influence the extent to which the results can be applied to a broader setting, is the lack of non-white participants in the included studies. Black men are twice as likely to develop prostate cancer in the UK (Lloyd et al, 2015). Age is a further limitation; while the majority of studies chiefly focus on men in their mid-to-late-60s, it has been shown that a younger age group is more suited to the conservative nature of the active surveillance approach (Leapman et al, 2017). It could be suggested that the weight men give to certain QoL outcomes, for example fear concerning poor sexual function, changes as they grow older, creating a further area for studies to explore.
According to NICE guidance, treatments for both generalised anxiety and depression should follow a ‘stepped-care approach’, which begins with cognitive behavioural therapy (CBT) (NICE, 2011). Practitioners use CBT with patients to explore how thoughts and feelings impact mood states and endeavour to challenge unhelpful thinking when it occurs. Drug therapy might be considered for more severe symptoms and might involve antidepressants such as selective serotonin re-uptake inhibitors (SSRIs) or selective serotonin-noradrenaline re-uptake inhibitors (SNRIs). The nurse can also educate patients in taking practical steps to improve mood, which may include sleep hygiene, regular exercise, establishing routine wake and sleep times and avoiding excess alcohol or smoking (NICE, 2018; 2019).
To manage men's anxiety towards active surveillance, Victorson et al (2017) suggested mindfulness practice, the idea of being actively aware of thoughts without judging them or yielding to the negative mindsets they create (Headspace, 2021). Such stress-management techniques may encourage men on active surveillance to take a more balanced approach to deciding whether to persevere with active surveillance until active treatment may be indicated (Yanez et al, 2015). Indeed, this study's findings suggested that anxiety is likely to decrease after a number of years; with this knowledge, methods to encourage adherence to active surveillance are crucial. Oliffe et al (2009) found participants performing activities including Tai Chi, meditation, and therapeutic touch reduced their uncertainty over living with ‘untreated’ cancer. Tai Chi incorporates meditation and provides an accessible way for men to perform light exercise, which may relieve stress through intentional movement and breathing techniques (Smith et al, 2016).
Recommendations for nurses
Recommendations can now be made based on the evidence gathered from this literature review. The review illustrated a gap in research that should be filled with further investigations concerning the psychological experiences of black men and younger men receiving active surveillance. Furthermore, large-scale mixed methods or qualitative studies are needed to gain more understanding of the complexity of emotions involved in active surveillance treatment.
Minimising the psychological impact of active surveillance for those men who would benefit from the pathway can be initiated at the decision-making process. Involving the patient in a discussion of the wants and desires individual to them and providing digestible information to promote a well-informed decision are ways the clinical nurse specialist (CNS) can achieve this. Men must also be made aware that they have access to a CNS at any point during their active surveillance journey, who will be able to provide support and counselling (Prostate Cancer UK and the British Association of Urological Nurses (BAUN), 2019). The nurse must be open-minded in their approach, knowing a man's age and race may hold significant sway in their decision.
Nurses should reassure patients that men with favourable-risk prostate cancer are unlikely to experience adverse health outcomes through active surveillance and recommend this pathway as a way to limit side effects from active treatment (Tosoian et al, 2015). However, if anxiety regarding active surveillance pervades and men wish to change their mind—or if clinically indicated by cancer progression—it is vital to emphasise that there are alternative treatment options that can be explored with their doctor or their specialist nurse (Guy's and St Thomas'NHS Foundation Trust, 2018). This approach identifies the patient as the agent of their own health and could help limit anxiety surrounding active surveillance by highlighting it can be subject to change.
Language can be used by health professionals, such as a CNS, to encourage men to be forthcoming about their mental wellbeing. For example, appropriate use of humour can help breakdown communication barriers, and using phrases such as ‘stress’ rather than ‘mental health issues’ may normalise a discussion around emotional states for some men (Queen's Nursing Institute, 2018).
Prostate cancer incident rates in the UK increased by 41% between the early 1990s and 2017 (Cancer Research UK, 2021). Research suggests the increase in prostate cancer diagnosis has prompted a demand on services that could be met using a nurse-led approach; a strategy which has been received well by patients who reported confidence and satisfaction in their care (Martin et al, 2018). Prostate Cancer UK and BAUN (2019) advocate the CNS workforce as holding the key to providing a holistic continuity of care for men, as well as alleviating both financial and time stressors on primary services. Prostate Cancer UK encourages nursing development through bursary, e-learning and education events. In hospital, cancer services could help staff nurses become competent in male catheterisation, lower urinary tract assessment, PSA interpretation, clinical trial recruitment and specialist support of patients with prostate cancer, with a view to maximising the provision of CNS staff (Prostate Cancer UK and BAUN, 2019).
Conclusion
The aim of this literature review was to investigate the psychological impact of the active surveillance pathway on patients with prostate cancer. The report looked at research to understand how the CNSs can provide support for patients experiencing the adverse effects of treatment. A systematic search was undertaken which resulted in eight quantitative studies. Findings from these studies generated headline themes including anxiety, illness uncertainty, depression, hopelessness and quality of life. The review found anxiety is likely to decline with time, thus the nurse is well-placed to support patients with short-term difficulties, in the hope of retaining suitable men on this non-invasive intervention. Using low-intensity, therapeutic strategies and knowledge of signposting, the CNS can also avoid the possibility of worsening depressive mood through supporting those with mild depressive symptoms. This holistic management could further aid patients experiencing reported outcomes such as illness uncertainty, fear of recurrence and hopelessness. This literature review has also highlighted concerns about physical functioning and perception of health as key indicators of poor psychological outcomes. Further research should be conducted, including using a qualitative approach, as well as focusing on the experiences of black men and younger men receiving active surveillance, given the likelihood of these patient groups being advised by practitioners to follow more conservative treatment.
KEY POINTS
- This literature review aimed to examine the psychological impact of active surveillance, a conservative treatment, in men with prostate cancer
- In the eight quantitative studies reviewed, the key psychological impacts identified were anxiety, sub-clinical depression, illness uncertainty and feelings of hopelessness
- Active surveillance was seen as a positive treatment by some patients because it limited the side effects of active treatments
- Future research is needed, especially among black men and men in younger age groups
- Nurses have a key role to play in providing and signposting information and encouraging men with prostate cancer to be forthcoming about their feelings and mental wellbeing
CPD reflective questions
- How can nurses help a patient who is struggling to decide between the treatment pathways for localised prostate cancer?
- Considering the lack of research undertaken to assess the psychological impact of active surveillance on younger and/or black men, what is your experience of how these men cope with this pathway?
- Is the upskilling of nurses to build upon the clinical nurse specialist workforce a viable and attractive option in your department?