To review the psychosocial needs of men undergoing active surveillance (AS, the monitoring of early prostate cancer, with curative intervention only if the disease significantly progresses) for prostate cancer, and barriers to its uptake.
To review the psychosocial needs of men undergoing active surveillance (AS, the monitoring of early prostate cancer, with curative intervention only if the disease significantly progresses) for prostate cancer, and barriers to its uptake.
The introduction of screening for prostate-specific antigen (PSA) has led to more men diagnosed with early and nonlife-threatening forms of prostate cancer; about half of men diagnosed as a result of PSA testing have cancers that would never cause symptoms if left untreated and yet up to 90% of such men receive curative therapy, then living with the toxicity of treatment but with no benefit. Thus AS is increasingly being promoted, but if such a strategy is to succeed, the psychosocial barriers that discourage men from adopting AS must be addressed. We reviewed and assessed reports on this topic, published in English since 1994.
There is relatively little research on AS, as most published reports refer to watchful waiting (which is a palliative management approach). Men with prostate cancer generally have lower levels of psychological disturbance than for other cancers, but the psychosocial issues identified include anxiety in response to no intervention, uncertainty related to loss of control, and lack of patient education and support, particularly around the time of initial treatment planning. Approaches that were identified to improve uptake of AS include increased education and improved communication, interventions to reduce anxiety and uncertainty, and the empowerment of patients by the development of a sense of control and meaning. Physicians attitudes are influential and the education of physicians about AS as an appropriate option is to be encouraged. Peer-support groups were also identified as being of particular value.
There are several strategies that should be developed if AS is to become more widely adopted. Increased education and good communication can alleviate anxiety and uncertainty, as can interventions for cognitive re-framing. Inviting patients to become active participants in their management might enhance the patients’ sense of control, and the involvement of peer-support groups might be beneficial.
Prostate cancer is the third commonest cause of cancer death in men, and is expected to kill almost 84 000 men in 2006 in Europe . The ratio of incidence to mortality is 3 : 1, but as a result of early detection through PSA testing, in the USA it is 8 : 1. For men with low-risk prostate cancer (as defined by the National Comprehensive Cancer Network ) the 10-year cause-specific death rate is <1%. While these excellent results might reflect the efficacy of intervention, it is likely that they also largely reflect the indolent nature of early prostate cancer, which is a remarkably common condition. An indication of this was recently shown in the control arm of the Prostate Cancer Prevention Trial . This study randomly allocated 18 882 men aged ≥55 years with a normal DRE and a PSA level of <3 ng/mL to treatment with finasteride (a 5α-reductase antagonist, 5 mg/day) or placebo for 7 years. At the end of the trial all patients had a sextant prostate biopsy (unless they had previously been diagnosed with prostate cancer). The most remarkable finding of the study was that the incidence of prostate cancer in the placebo arm was 24%, which by study design included patients who were asymptomatic. Autopsy studies suggest that the true occult rate is two to three times higher , yet the prostate cancer death rate in the population is closer to 2.5%.
With increasing adoption of PSA screening, half of all men now being diagnosed have low-risk prostate cancer [6,7]. To date, there is only one randomized trial of curative treatment (radical prostatectomy) vs no treatment (watchful waiting, as defined below) for men with localized prostate cancer, and this showed no survival benefit after 10 years for those aged >65 years at diagnosis . That study, which included clinically rather than PSA-detected cancers, would have included men ≈ 10 years after they would have been detected by PSA screening, due to the lead time that it introduced . Therefore, the logical conclusion is that curative therapy for screen-detected prostate cancer only generally leads to a survival benefit for men aged less then ≈ 55 years, yet this age group represents only 5% of incident cases  In addition, curative therapies have significant toxicity, including erectile dysfunction in over half of patients, incontinence and urinary irritation [11,12]. There is no documented health-related quality-of-life (HRQoL) detriment from deferring treatment, including anxiety and depression .
For these reasons the concept of active surveillance (AS) is being increasingly promoted, AS being defined as the systematic monitoring of men with low-risk prostate cancer, with subsequent treatment of those whose tumours show significant growth characteristics, when treatment remains potentially curative. An important distinction must be made with the term ‘watchful waiting’ (WW), which refers to the palliative treatment (using TURP, hormone therapy, etc.) of men with progressive prostate cancer. WW is chosen by some men who prefer to avoid curative therapy even if the opportunity for cure is lost, and those for whom the tumour is too advanced for cure at diagnosis. The differences between these approaches were reviewed by Parker . AS is being explored in phase-2 and -3 studies in Europe and North America, in comparison with early intervention [14,15]. However, currently <10% of men in the USA with low-risk prostate cancer are using this approach , and in Europe the percentages are only slightly higher . The low uptake of AS as the most viable option for many men needs more detailed exploration.
To understand the potential psychosocial barriers to the uptake of AS it is useful to frame this event in the context of current theories of ‘stress and coping’. The most commonly applied theory is the Coping and Appraisal model of Folkman and Lazarus . In this concept, stress is felt when the demands of a situation are appraised as greater than the subject’s resources for coping. Coping itself is divided into two methods, i.e. problem-focused coping and emotion-focused coping. When stressors are appraised as somewhat personally controllable, one can apply problem-focused approaches to directly solve the problem and address the stressor. For example, if a man diagnosed with prostate cancer is recommended to undergo surgery or radiotherapy, there are clear steps to follow to solve the problem. Alternatively, emotion-focused coping refers to dealing directly with the emotional concomitants of stressors, such as distress and existential angst, rather than trying to solve the problem directly; this is especially important in circumstances when one has little or no control over the specific situation, such as fears of cancer recurrence or death and dying. In this case, if the recommended course of action is to ‘do nothing’ this can cause increased anxiety and a sense of loss of personal control over the event (having prostate cancer). In this instance the best course of action is to use emotion-focused coping skills such as anxiety reduction and seeking social support. However, it might be the case that men in general have more experience and expertise with problem-focused approaches to coping, rather than emotionally focused strategies. Hence, a situation such as undergoing AS, that requires these emotion-regulation skills, might provoke more long-lasting anxiety and psychological discomfort.
To investigate this theory in the context of empirical reports, we reviewed the psychosocial needs of men undergoing AS, and barriers to its uptake. If AS strategies are to be more widely accepted it will be important for these to be addressed. The findings are then integrated with the stress and coping model, and suggestions for strategies to enhance the uptake of AS through appropriate coping techniques are outlined.
We reviewed published reports and all relevant and available articles published after 1994 were retrieved. Exclusion criteria were minimal, given the scarcity of publications on this topic. All English-language theoretical models, reviews and empirical studies on psychosocial characteristics of men on AS or WW were included. Four databases were searched, i.e. Medline, the Cumulative Index of Nursing and Allied Health Literature (CINAHL), EMBASE, and PsycInfo. Search terms were:
prostate cancer AND/OR (explode):
Citations were culled by excluding advice, opinions and editorial pieces; also excluded were studies pertaining to specific surgical oncology procedures or of biochemical and microbiological processes of prostate cancer treatment. A ‘snowball’ technique, leading to more focused searches, was used with the names of key authors and the reference lists of relevant publications, especially reviews.
Of the 104 potentially relevant papers that were found, 36 contained information that was directly relevant to the topic and are included in this review. There are many reports on traditional WW in men with prostate cancer, particularly the comparison between WW and other treatments for prostate cancer, in terms of treatment effects on physical well-being, QoL and survival. Patients’ broad psychosocial functioning and the psychosocial impact of WW is discussed less frequently. Reports discussing AS are scarce, particularly in the area of psychosocial needs. Also, many articles use each term loosely and it is not always clear exactly which patient population is being studied. Patients who are managed by WW tend to be older, with poorer QoL, health and symptom outcomes than those on active treatment . If AS is used as a temporizing measure before possible curative treatment where indicated, patients might differ from those managed with WW and the psychological consequences might also differ.
Men with early localized prostate cancer have lower levels of psychological disturbance than those with more advanced prostate or other cancers, and have only slightly more distress than the general population . The most common forms of psychological distress experienced by patients with cancer are anxiety and depression, which frequently coexist . For men with early prostate cancer, anxiety and traumatic stress symptoms are the most common psychopathological features . Pre-morbid factors such as physical functioning, medical and psychiatric history and disease status do not seem to be associated with psychological distress at the onset of disease, with a lower age being the only independently significant predictor of distress .
In a recent qualitative analysis Kroenwetter et al. found that some patients with prostate cancer react to their diagnosis with anxiety, distress and denial. Others respond that this is ‘just another problem to be solved’ or ‘not a big deal’. These two types of reactions are equally common. Some men just want to ‘fix’ the problem and go on with their lives. This might explain why some men choose immediate therapy, and is consistent with a problem-focused orientation to coping.
Few articles were found that directly address AS (as opposed to WW), although some characteristics might be shared by both groups. Chapple et al. identified three factors that might provoke men to more invasive treatments: (i) Lack of physician support for WW/AS; (ii) outside pressure from family and friends to actively ‘do’ something about the cancer (see Chronicle 1) and; (iii) the internal pressure to ‘fight’, ‘do’, or ‘combat’, so as to maintain a sense of control. These findings are similar to those found for women with very early breast cancer . Hedestig et al. interviewed intensely seven men with untreated localized prostate cancer about their feelings. They reported feeling alone with the disease, being under a constant threat and experiencing uncertainty, fear and worry. Also they were less sexually active than before the diagnosis.
Excerpt from correspondence on a 66-year-old patient being counselled for early prostate cancer. The patient has 1 mm of one of eight biopsy cores positive for Gleason 6 prostate cancer (confirmed on repeat biopsy), a normal DRE and a PSA density of 0.2 ng/mL/mL; the patient only wants treatment if it is thought necessary.
I have discussed the situation with Mr X and his wife. They have several physicians in the family, including a urologist in Texas. I believe the family is uncomfortable with the concept of AS and are encouraging Mr X to proceed to definitive treatment.
In a study of psychosocial outcomes of treatment for early prostate cancer Clark et al. found that men who had had surgery, compared with other alternatives, expressed lower levels of worry about their future health. Men who had chosen WW were less confident about cancer control than those who had radical prostatectomy, who showed relatively high levels of confidence after treatment. Those on WW reported a lesser belief that their decision was informed than actively treated men, but had fewer symptoms. Perceptions of cancer control and treatment decision-making are therefore correlated with how patients view their QoL.
Several predominant and interrelated themes emerged about men’s psychosocial functioning in response to AS, which are consistent with the theory of stress and coping, described previously. These are uncertainty, anxiety, the need for peer support, and the physical effect on QoL of potential treatment.
Wallace  reported that men who undergo WW have high levels of uncertainty about their choice. Indecision about treatment choice can also lead to distress . Clark et al. showed that men who chose WW tended to be less satisfied with their decision-making, albeit with less regret.
Mazur and Hickam , in a survey of 148 men with prostate cancer, found that 26% would trade possible survival benefit to avoid active intervention, while most (43%) would accept surgery even with no predicted survival benefit. The act of ‘cutting it out’ appeared to be an important factor in their decision. This active form of problem-focused coping served to help to reduce the simmering anxiety caused by uncertainty and lack of control that men were not able to address using other strategies.
In a study of 1651 men who had prostate cancer detected by screening, 8% of those who were managed with WW were dissatisfied, vs 21% after perineal prostatectomy (a procedure that is less common than retropubic prostatectomy), and 14% with radiotherapy . Hence, in this case WW was a better option in terms of psychosocial outcomes such as regret. This is in contradistinction to the research reviewed above, showing less satisfaction in symptomatic men who choose WW/AS. It might be the case that the lack of symptoms to remind men of the cancer in their bodies, and their feelings of inaction about it, led to less anxiety in the screening-detected WW group than those with the negative side-effects of surgery or radiotherapy.
The perceived threat of cancer and the meaning that patients ascribe to their disease can create feelings of anxiety . Most studies do not consider that asymptomatic men living with untreated prostate cancer might experience psychological distress triggered by knowing they might have a growing cancer, and yet lack the symptoms of the disease . However, this possibility seems quite logical, given the ‘cut it out’ mentality described earlier, and the ‘ticking time bomb’ anxiety that can lead to this mentality.
An additional source of anxiety is the monitoring of the disease (treated or untreated) with PSA testing, a condition that has been described as ‘PSA-itis’. It is recognized that variability of the PSA test result of up to 25% might occur due to inter-laboratory and biological variation, as well as infections, etc. There is a relatively high discontinuation rate from both AS  and WW , and this might be related to anxiety associated with close disease monitoring, which acts as an ongoing reminder of its existence, and fear caused by naturally occurring fluctuations in PSA levels, which might be interpreted as real and meaningful increases in PSA and hence disease progression.
In an evaluation of men undergoing AS, Patel et al. found that 8% of men with no evidence of cancer progression were given active treatment because they had significant anxiety about living with cancer and the possibility of progression. A similar number received treatment because of a combination of anxiety and physician concern about possible (as opposed to definite) progression. The rate of change of cancer anxiety (as measured on the Kornblith scale ) is an independent predictor of time to treatment, for those managed with AS . Hence it is clear that learning techniques for managing anxiety is a key element in the maintenance of men on AS.
Many men who do not have treatment for prostate cancer have feelings of being alone with the disease . Relationships with the patient’s partner might become more conflicted, perhaps because men tend to seek isolation rather than confide in their partners . Relatively few services are available to men with prostate cancer to aid them in their treatment decisions and the anxiety surrounding their illness, and men might be less likely than women to use health services and psychological support services. A significant number of men with prostate cancer attending support groups report moderate to high needs for help with issues around sexuality and with their fears, emotions and concerns about cancer . The ‘stiff upper lip’ mentality is still prevalent, particularly in older men, who might see seeking support or admitting a need for help as a sign of weakness.
A study of interventions to modify lifestyle factors for men with prostate cancer managed with AS, comprising diet, exercise, stress management and group support, provided opportunities for informal support, socialization, connection to others, shared activities and a sense of belonging . The result of this intervention was that a feeling of ‘nothing is being done’ was replaced with a feeling of control and meaning. The peer community was the most highly valued component of the intervention. The specific areas where help is most required include sexuality, psychological issues (fears, emotions and concerns about cancer), and more information about their disease, its treatment and side-effects. The potential for support from a peer group was shown in a prospective interventional study of lifestyle modification for men with prostate cancer managed with AS; >90% of participants commented positively on the peer community .
In a longitudinal study of general QoL , men were followed for 2 years after their treatment decision. Differences emerged between those having surgery and radiation over the first year of follow-up, with the mental domain scores widening further with time. Generally, patients who had had surgery had the least mental distress, followed by those who chose no active treatment, and with patients having radiotherapy scoring the worst. This might have been due to the side-effects of radiotherapy, but the reason remains unclear. Unsurprisingly, those with more advanced cancers expressed more worry, while the older patients expressed less, as a cancer diagnosis tends to be less of a surprise to older men. Physical symptom scores were affected more in those who had curative treatment . For those who chose WW, changes in HRQoL continued to decline for 5 years, consistent with the finding that patients who choose WW can expect an extremely small decrease in general HRQoL, if any , compared with those who have treatment . A large randomized comparison of radical prostatectomy vs WW showed that although patients differed in urinary and sexual symptoms, on average, the treatment arm had little influence on well-being or subjective QoL, in that men in both groups were doing equally well . Many domains declined as expected with ageing (compared to men with no prostate cancer). In that study, QoL was assessed only once, 4 years after randomization. Differences might have emerged later in those with disease progression. Few studies have addressed changes in physical symptoms with AS (as opposed to WW), but it would not be expected that these would change over time, because an indication for intervention would be the development of symptoms caused by the disease, and low-risk prostate cancer is generally asymptomatic.
The degree to which perception of risk of toxicity influences the decision to have one treatment over another is uncertain, but it was reported that there is ‘an apparent disconnect between patients’ stated importance of side-effects and the role that they actually play in reaching the final treatment decision’. The extent to which this reflects patients’ perception of risk-benefit, or poor communication with a health provider, or the influence of a third factor such as anxiety, is uncertain. The patient’s experience described in Chronicle 2 illustrates this. Perhaps anxiety-reducing interventions or peer-support group mentoring might have led to a different outcome.
The patient is a 65-year-old man with early prostate cancer. At presentation he had no palpable disease (stage T1c), a PSA level of 5.7 ng/mL and one of eight biopsy cores positive for 1 mm of Gleason 6 prostate cancer. A repeat biopsy showed no evidence of cancer, and after counselling he embarked on an AS strategy. After 3 years his PSA level had risen to 8.7 ng/mL and he wished to proceed with treatment, choosing brachytherapy.
Although the procedure was uncomplicated technically he developed urinary retention and required long-term catheterization, still in place 6 months after several trials of voiding and pharmaceutical intervention. He nonetheless remains satisfied with his decision to proceed with treatment.
The important role of the physician is referred to by the qualitative analysis of Chapple et al., and it is apparent that the advice of the physician is crucial for most patients’ decisions . Indeed, some men who had treatment revealed that they might have chosen a non-interventional approach, but remembered this being presented as a more difficult alternative. The few who did choose WW had found doctors who had supported their decision.
Our review did not uncover research specifically addressing physicians’ attitudes or decision-making for managing patients with AS. In this regard, urologists more often recommend surgery and radiation oncologists recommend radiation for localized prostate cancer . Urologists felt that surgery was the better option for 93% of men with localized cancer and a 10-year life-expectancy, whereas 72% of radiation oncologists thought that radiation gives equivalent results. Knowledge of this bias might add to patients’ confusion and uncertainty about the most appropriate course of action, and subsequently increase distress and anxiety.
There are also pressures on physicians that might be inadvertently transmitted back to the patient . These relate to the relative ease to treat (which is usually what the physician has been trained to do), in contradistinction to no intervention. The latter might seem unnatural (ironically, as it is allows the disease to take its natural course until intervention is truly necessary), and risks some loss of control for the physician, who is equally vulnerable to anxiety about losing control. To add to this, the message usually communicated to both the public and physicians is that early detection is equated with a higher chance of cure. This is understandable, as it is indeed the case for breast, cervical and colorectal cancers . Early detection also implies that something will be done about the cancer when it is detected, and so the idea of WW, or AS, flies directly in the face of that message.
From the foregoing it is apparent that to maximize the uptake of AS with minimum adverse effect on the patient’s psychosocial functioning, physicians and other caregivers need to address several broad areas, taking into account the skills needed for men to address barriers to AS, e.g. excessive anxiety and coping with uncertainty. An AS strategy should be evidence-based and protocol-driven, so that both patients and caregivers are confident that the window of opportunity for curative treatment will not be missed, if eventually needed.
Anxiety and uncertainty are the major sources of distress and cancer specialists can play a positive role in reducing this. Attention to communication issues is critical, because levels of distress have been shown to be affected by information that is available to patients about what to expect . Most patients recall receiving much less information about treatment alternatives and their outcomes that physicians say they typically provide . Measures to enhance recall of information from the oncological consultation, such as audio-taping, are to be encouraged. A large, randomized study of audio-taping the primary treatment consultation was reported by Hack et al.. Men with prostate cancer who received the consultation audio-tape reported having had significantly more discussion about treatment side-effects, treatment alternatives, and treatment and disease information in general, than patients who did not receive the audio-tape. Consideration should also be given to demographic factors, including ethnicity, cultural attitudes and language barriers. Physicians can help to decrease the worry about AS by communicating clearly and with confidence that this treatment approach is a good choice for a given patient. Clear plans, including ‘stopping rules’ should the disease progress significantly and require treatment, might facilitate this.
Because each patient’s needs are unique  and cannot always be predicted by physicians, patients should specifically be asked what information is pertinent to their decision. Patients’ information needs vary widely among individuals , and a simple information package might not address all that are relevant to an individual. Patients tend to research their options and to participate to varying extents in making a decision. Physicians and other health professionals need to facilitate this by providing advice about where and how to get access to high-quality information .
Appropriate teaching and management interventions might alleviate anxiety , as might interventions to help men cognitively reframe and manage the uncertainty of WW . This intervention is based on the ‘reconceptualized uncertainty in illness’ theory of Mishel , which is designed to help men to integrate uncertainty into their lives, by teaching them to cognitively reframe the way in which they view their illness and the uncertainty it produces.
Stress-reduction programmes based on ‘mindfulness meditation’ might be beneficial for reducing anxiety and depression in men with early-stage prostate cancer [53,54], as are programmes of cognitive-behavioural stress management . These programmes share an emphasis on teaching skills for both problem-focused and emotion-focused coping, both of which men choosing AS will need to use. Knowing that his condition is truly being actively monitored will help patients to decrease worry and anxiety
It is important to provide the patient with a sense of control and meaning . Patients report empowerment when they are invited to become active participants in their management, and physicians have a critical role to play in how patients perceive the control they have around the decisions they make. Active and informed patients who become key decision-makers in their care gain greater control over the disease and their lives. An increased sense of control will add to feelings of efficacy around problem-focused coping strategies that men can use. Interactive web-based access for each patient to view his personal data and progress will help.
The value of peer support through prostate-support groups is immense and will need to be actively encouraged within any AS protocol, and barriers to participation, such as ingrained attitudes, need to be addressed. Such groups could work with healthcare providers to develop educational aids, and could then take a leading role in disseminating that information to patients.
Those with partners might find that their involvement is helpful for both, as partners often report as much if not more distress than patients themselves. Gray et al. reported that an important aspect of dealing with the couples’ changed situation was to re-establish their commitment to each other. This was often related to the amount of open communication between them. Contrariwise, a lack of reconnection between partners was usually associated with a failure of one or the other to communicate feelings and concerns, thus creating dissonance in the relationship and making mutual support more difficult.
All parties involved should address the challenging concept that it is acceptable not to treat the cancer immediately. Education of physicians about risk stratification and the natural history of prostate cancer are important areas to address. Recent data showing decreased death rates from prostate cancer [56,57], and a public debate about potential over-treatment, will also help. The physician should assess options in each patient, based on age, medical realities and a patient’s personal preferences. Throughout the entire process, it is important to maintain a positive, hopeful attitude to support the patient, irrespective of his choice of therapy . The importance of creating such a physician/companion relationship was described previously 
Several promising research directions arise from this review. These include exploring the decision-making process, and the psychological distress related to the decision made. Evaluation and refinement of patient support, ranging from written through electronic and group supports, are required.
A fruitful area that is being studied is lifestyle intervention, and the required intensity of this support could be further examined. Ultimately randomized studies comparing different support and educational programmes will be required to show their net worth, in terms of psychosocial and medical outcomes, including disease progression.
In conclusion, currently it is estimated that half of all men with prostate cancer detected by PSA screening receive unnecessary treatment . For the alternative strategy of AS to be used successfully in significantly more men, support must be provided that is tailored to the individual coping needs of men undergoing AS. The areas of most need are alleviating psychosocial distress, including anxiety and uncertainty, and providing group support.
This project was supported by a research team grant from the Sociobehavioural Cancer Research Network of the National Cancer Institute of Canada with funds from the Canadian Cancer Society.