Prostate cancer is the most common non-skin cancer in men. It is fraught with both physical and psychological symptomatology. Depression, anxiety, stress, fatigue, pain and psychosocial factors all affect the patient with prostate cancer. Impotence, erectile dysfunction, sexual issues and incontinence in these patients complicate matters further. Anxiety may exist both before testing and while awaiting test results. Confusion over choosing from various interventions often adds to anxiety and depression in these patients. Various demographic factors and the developmental stage of the couple affect these psychological symptoms. The caregiver may undergo significant psychological turmoil while caring for a patient diagnosed with prostate cancer, which is addressed. The role of nurses in the management of prostate cancer is discussed. The present review looks at psychological issues in patients with prostate cancer from a clinical perspective, with the aim of highlighting these issues for the clinical urologist dealing with these patients. It also explores the consultation–liaison relationship between psychiatrists, psychologists and urologists as a team for the multimodal management of prostate cancer.
The last few years have seen a rise in the incidence and prevalence of prostate cancer worldwide, making it the most common non-skin cancer in men today.1 Better treatment procedures and diagnostic aids have prolonged the lifespan of patients with prostate cancer. Along with this, there has also been an increase in the number of patients with prostate cancer who face psychological distress in addition to their physical problems.2 Depression, anxiety, posttraumatic stress symptoms, pain, sexual problems and difficulty in urinating, along with other symptoms, can potentially develop during both the initial and later stages of the disease. The management of these symptoms from a psychological point of view is essential when considering treatment alternatives for prostate cancer.3 However, this aspect had often been neglected in the management of prostate cancer. The present article reviews the various psychological problems seen in patients with prostate cancer, highlighting these for the busy clinical urologist and/or oncologist dealing with these patients on a routine basis. This paper also reviews the consultation–liaison relationship between mental health professionals and urologists in a prostate cancer unit and the multidisciplinary and multimodal management of this problem.
Materials and methods
For identifying articles that focused on men who were at risk for or who had prostate carcinoma, the terms ‘prostate cancer’, ‘prostatic carcinoma’, ‘prostatic neoplasms’ or ‘PSA’ were used. For identifying articles that focused on specific terms, words such as ‘anxiety’, ‘anxiety disorder’, ‘depression’, ‘health-related quality of life (HRQOL)’, ‘couples’, ‘erectile dysfunction (ED)’, ‘incontinence’, ‘psychosocial issues’ and other terms were used. These two search strategy results were combined with an ‘and’ statement in the following data bases with the time frame being specified from 1999 through 2011. The databases used were Medline, PubMed and the Cochrane Database on Systematic Reviews. In total, 189 articles were identified that included reviews, mini reviews and randomized controlled trials in populations with or at risk for prostate carcinoma. The randomized controlled trials reviewed were centered on those addressing psychological symptoms in prostate cancer.
We included trials and quantitative studies with sample sizes of more than 30 participants and that reported either mean scores or percentages with appropriate statistical analysis. All authors reviewed all of the articles and the most relevant ones were chosen for this review. The papers reviewed in this article include articles, trials and research papers on prostate carcinoma. This is supplemented with the personal clinical experience of all the authors in this field who work regularly with this group of patients and have further insight into the problems faced by them. All the authors are psychiatrists working in a tertiary hospital and medical college where there is a consultation–liaison relationship between the urology and psychiatry departments on a regular basis.
General psychological issues in prostate cancer
Psychological and social issues arise in 30–50% of prostate cancer patients irrespective of the stage and progression of cancer or the type of treatment they receive.4 With effective assessment and intervention, clinicians can help to recognize troublesome and disturbing problems, reduce their negative impact and enhance the QOL for patients and those close to them. Some of the psychological issues that are commonly seen in prostate cancer are anxiety related to the cancer and its cure, depression and depressive symptoms, guilt and remorse after a diagnosis, fear with regard to PSA assessment, fear with regard to recurrence of the cancer after treatment, an impending fear and recognition of death, fatigue and pain, which may be aggravated by social and psychological factors and the ensuing sexual problems during and after treatment.5 However, making a psychiatric diagnosis in a prostate cancer patient can be complicated by overlapping symptomatology seen in psychological disorder and cancer that includes fatigue, weight loss, sleep disturbance, loss of appetite and anxiety. One needs to assess the more subtle psychological or cognitive symptoms, such as feeling a lack of pleasure, depressed mood, hopelessness and helplessness along with anxiousness to help establish a diagnosis.6
An overview of anxiety and depression in prostate cancer
Anxiety and prostate cancer
Anxiety is an affective state that can often occur without an identifiable triggering stimulus. As such, it must be distinguished from fear, which is an emotional response to a perceived threat. Additionally, fear is also related to specific behaviors of escape and avoidance, whereas anxiety is related to situations perceived as uncontrollable or unavoidable. Another form of anxiety is anticipatory anxiety, which is a future-oriented mood state in which one is anxious anticipating a future upcoming negative event.7 Anxiety is seen in various forms in patients with prostate cancer. Anxiety may be seen while testing for prostate cancer (PSA testing), diagnosis, during treatment, while dealing with the social stigma, could be related to sexual function and an anxiety with a fear related to recurrence of the cancer after treatment.8 Studies have shown that at any given time 20–60% of patients with prostate cancer may suffer from anxiety in general.9
PSA testing is associated with a significant amount of anxiety in prostate cancer patients. A blood test to measure PSA is considered the most effective test currently available for the early detection of prostate cancer, but this effectiveness has also been questioned due to risks of false positives and false negatives.10 A study on anxiety in prostate carcinoma suggests that while screening for prostate carcinoma, anxiety levels vary plausibly over the clinical timeline in response to stress and uncertainty both before to testing and while awaiting the reports. Baseline levels of anxiety related to screening are much lower for older men than younger men with the illness.11 Reducing anxiety by itself is a potential motivation for screening, because individuals may hope for reassurance from a normal test result. In fact, urologists are well aware of the anxiety, physical and emotional distress undergone by men who are getting their PSA tested and those who have elevated PSA levels, a condition called PSAdynia.12
It is also essential that one distinguishes between anxiety ‘trait’, which may be present as a background characteristic of the patient's personality, and anxiety ‘state’, which is a situational response to a stressor. Anxiety trait when present indicates that the patient is basically anxious by nature and shall carry the anxiety with him throughout the clinical process and treatment. Anxiety state in turn indicates a transient response of anxiety with regards to test results if bad, prognosis and certain treatment outcomes.13 The memorial anxiety scale for prostate cancer is an appropriate tool that can be used for screening of anxiety in patients with prostate cancer. It consists of three subscales, which are anxiety related to prostate cancer, fear of recurrence and PSA-related anxiety.14
Our review identified a total of 39 studies between 1984 and 2011 that have evaluated anxiety in prostate cancer. In many of these studies, anxiety related to screening was paramount and seeking peace of mind via a negative result was the main reason to get testing done. Avoidance of screening was also related to anxiety. Having a family member with prostate cancer increased anxiety about having prostate cancer.15 In most of the studies, 30–40% patients complained that the anxiety affected their day-to-day functioning. Anxiety levels were highest in a group awaiting biopsy results and were related to the test report and not doubts regarding the biopsy procedure. Even a diagnosis of prostate cancer when established did reduce anxiety as the uncertainty reduced, but this reduction in anxiety was not as much as on obtaining a negative result.16 Most studies on anxiety in prostate cancer were small in size, and few were prospective in design. In areas where anxiety was studied most carefully, particularly in the realm of pursuing screening, anxiety changes were consistent with the hypothesis that anxious men were more likely to pursue screening, especially younger men and those who had relatives with a history of prostate carcinoma.17 This may influence the choice of treatments for localized disease, as men who are more anxious may undergo surgery to avoid worry about cancer spread. One neglected area of our current understanding for the HRQOL and decision making in prostate carcinoma is the role of patient anxiety and our current knowledge does remain fragmentary in a sense. Future research needs to assess the role that patient anxiety would have in prostate cancer screening, treatment decisions and recovery.18
When and if a patient is diagnosed with prostate cancer via biopsy or after detection of elevated levels of PSA, it is essential that the urologist sends the patient for a psychological evaluation to help the patient cope with the news and also prepare him to cope with the treatment procedures that may follow. Along with this, it is also essential to involve the primary caregivers to understand the treatment process and psychological distress of the patient along with an allaying of their own anxieties. In our clinical experience, we have noted that awareness about the disease makes patients more comfortable, thereby making them feel in charge of their bodies and this may help them become more receptive to treatment options. Counseling helps patients understand their limitations, how to deal with the pain, anxiety and depression that follow. Counselors help to control the psychological dilemmas faced and may bridge the gap between doctors and patients.19
PSA bounce anxiety in prostate cancer
This section has been incorporated in this article to give the reader an insight into the PSA bounce phenomenon. It is a urological phenomenon that has psychological implications. This is an important phenomenon noteworthy for both the psychiatrist and the urologist who treat prostate cancer patients. Patients continue to experience anxiety in prostate cancer even after the treatment is over and after all the malignant tissue has been destroyed. Patients receiving external beam radiation therapy or ultrasound-guided prostate brachytherapy (seed implant) as treatment for early-stage prostate cancer may experience a benign rise in PSA value after the treatment. A study describes the phenomenon called ‘PSA bounce’, which can be mistaken for a rise in PSA resulting from biochemical failure. The PSA bounce can be a major source of anxiety for patients and families and can create diagnostic challenges for clinicians.20 Clinicians should be aware of this complex phenomenon, observe PSA values and account for the PSA bounce in posttreatment management of their patients. Patient education and psychosocial support can be helpful for patients and families when PSA values rise after radiation treatment.
While assessing anxiety in a patient with prostate cancer, it is essential that urologists are taught and equipped to screen for anxiety-related phenomena in these cases. It would also be essential if a psychiatrist, psychologist and urologist could have a joint evaluation of the patient to work out an effective treatment plan as well as ascertain the causes of the underlying anxiety.
Depression and prostate cancer
The clinical significance of psychological distress, particularly depression, experienced by men with prostate cancer has yet to be addressed adequately in the research literature. Few studies have empirically examined the prevalence of depression in men with prostate cancer. Similarly, few experimental studies have tested the effectiveness of interventions targeting depression or mood as outcomes. Although the literature is sparse, a need exists to organize the available research to chart the direction for future investigations.21 Men with prostate cancer at a risk for depression include those with advanced prostate cancer, prominent pain symptoms, side effects of treatment and a previous history of clinical depression.22 Depression has been strongly correlated to fatigue and pain as symptoms in prostate cancer.23 Rates of depression in older men with prostate cancer are lower than those typically reported in women with breast cancer.24
Prostate cancer pain appears to be associated strongly with depressive symptoms, whereas fatigue induced by radiation therapy or hormonal therapy has not been associated consistently with increasing depression.25 QOL studies have found few prostate treatment variables associated with depression.26 Rather, major findings from these studies indicate that being older, being married, having high social support, being optimistic and having less impairment in physical functioning are associated with decreased risk of depression.27, 28, 29, 30
The profile of risk factors associated with depression in men with prostate cancer is highly consistent with the profile of factors empirically shown to be associated with risk of depression in general cancer populations.31 The studies comparing men with prostate cancer and their partners suggest that partners’ risk for psychological distress, including depressive symptoms, is as high as or higher than patients’ risk. Notwithstanding, the research on informational interventions and comprehensive reviews of psychosocial cancer intervention research in prostate cancer indicate that the state of the science for supportive care interventions aimed toward men with prostate cancer is limited.32 The modest amount of interest in addressing the psychological complications of prostate cancer as compared with breast cancer often is attributed to the common belief that older men generally are unlikely to experience depression, even when dealing with cancer.33
In the past 10 years, there has been new research into depression among men with prostate cancer. Nursing science is prominent in making contributions to this growing field of investigation. Nurses can use their current knowledge to identify men with prostate cancer at the highest risk for depression in their clinical settings.34 The concept of male depression lacks sufficient empirical support, but this concept is useful to clinicians to assess men for maladaptive behavior, such as substance abuse, self-neglect, abusive behavior directed toward significant others, as well as an expression of depressed affect. Clinicians are advised to assess the psychological status of not only the male patient with prostate cancer but also the potential for depression in the patient's spouse.35
Anxiety about cancer as a diagnosis, lack of awareness, medical complications that ensue, the fear of death and financial burdens are some of the factors that lead to depression among prostate cancer patients. There is often a delay in diagnosis of this depression, which reduce the chances of long-term cancer survival by 10–20%.36 Effective psychotherapeutic treatment for depression, along with antidepressant therapy, has been found to affect the course of prostate cancer. Psychotherapy results in reduced anxiety and depression, and often pain reduction. Psychotherapy also results in longer survival time for the patients.37, 38 The physiological or neurobiological mechanism for these findings has not yet been determined, but the possibilities for psychotherapeutic effects on physiological change include health maintenance behavior, health-care utilization, endocrine and hormonal changes and positive changes in immune function. Thus, effective treatment of depression results in better patient adjustment, reduced symptoms, reduced cost of care and may influence disease course.39 A combined evaluation and treatment approach where the urologist and psychotherapist or psychiatrist work out an effective treatment plan considering psychological and urological perspectives on the etiology of depression is best for the patient.
Stress related to prostate cancer recurrence
Patients diagnosed with recurrent cancer may experience many of the same feelings experienced earlier when first diagnosed with cancer. Shock, disbelief, anxiety, fear, grief and a loss of control are all common emotions. Feelings of betrayal, anger that it could happen more than once, anger directed at the doctor for not curing the cancer the first time or anger at themselves are common and normal responses to what can be an especially difficult experience.40 Many people with recurrent cancer also experience self-doubt about their original treatment decisions or choices after treatment. It is important that the doctor/psychologist make the patient understand that the choices the doctor made at the time of original treatment were based on the information available then, and possibly the best at that time.41
Understandably, patients diagnosed with recurrent cancer may feel that they cannot find the strength to cope with another round of tests and treatments. But many patients find that they are better prepared than at the time of the original diagnosis. Some of the factors patients with recurrent cancer find helpful include knowledge of the cancer, which helps reduce some of the fear and anxiety related to the unknown and previous relationships with doctors, nurses and clinic or hospital staff that ease stress during their visits to the hospital.42 Along with this, a greater knowledge of the medical system and how to negotiate it, including an understanding of medical terms and a better understanding of the medical insurance system, has a vital role in adaptation to treatment. Familiarity with cancer treatments and their side effects, as well as what works best to lessen those side effects along with familiarity with different types of support, including support from family and friends, support groups and professionals trained in providing emotional support, all help in stress reduction. Most patients are also aware of the types of stress-reducing methods that work best, such as exercise, meditation or spending time with friends.43
Psychosexual issues in prostate cancer
Psychological aspects of ED in prostate cancer
ED, a complication feared by many men diagnosed with prostate cancer, can occur from aging, the cancer itself, surgery, radiation and hormonal therapy. After treatment, men wonder whether ED is prolonged and when or whether they will be able to have sex again.44 For those men who are particularly bothered by sexual dysfunction, the first step should be a consultation with an urologist who specializes in male sexual dysfunction. Sex therapy with a trained therapist may help a man express the feelings engendered by this dysfunction, and may help a couple learn alternative ways of sharing sexual intimacy. Another confusing aspect for selecting treatment is the differential impact on erectile function in radical prostatectomy versus radiation therapy.45 Little data exist on the association between ED and depression, specifically in men with prostate cancer. It is clear from population studies conducted in other settings that there is a relationship between these two variables.46 The rate of depression was extremely high in men with ED and was significantly higher than in men in the control group with BPH.47 It is likely that the presence of distress or depression related to ED may lead to relationship problems due to the increased stress on the couple. When a man experiences ED, he often pulls away from sexual contact and sexual intimacy. Many men report that there is no use starting sexual contact when they cannot ‘perform’ sexually. Men state that engaging in a sexual experience reminds them of their ‘lack of manliness’, often times increasing their distress or depression over the loss of erections. This process leads to a lack of intimate contact in the relationship, which can lead to conflict and frustration.48 Preliminary data exist to support these clinical observations; studies have found that the couples where the male partner reported ED also reported less intimate contact, and lower scores on togetherness and tenderness within the relationship.49 Careful consideration and good history taking are a must when determining combined urological and psychological approaches for the management of ED in these cases.
Incontinence and sexual recovery in prostate cancer
The fear of urine leaking, smelling of urine, bowel accidents and having to use diapers is humiliating to many men.50 In fact, urinary incontinence has been rated a more bothersome outcome than ED.51 There are some men who begin to shun social contact. This social withdrawal is often mistaken for a major depression and this situation, however, if disregarded can lead to significant anxiety and depression, which may then need to be treated by anxiolytics or antidepressants.52 Both supportive psychotherapy53 and cognitive behavioral therapy54 can assist a man in coping with these changes in lifestyle. Specifically, cognitive behavioral therapy is a short-term, present-focused psychotherapy aimed at examining and altering distorted, maladaptive thoughts about oneself and their environment, whereas supportive psychotherapy is a modality with less focus where more open-ended support is provided. In order to help men cope with this symptom it is important to identify the etiology of incontinence and educate patients and families about this problem, and offer ideas to alleviate or reduce symptoms.55 Urinary incontinence can be alleviated with pelvic muscle reeducation, bladder training, anticholinergic medications and even artificial sphincter surgery.56
Some general issues in prostate cancer-related psychological distress
Patient education is of paramount importance in prostate cancer because often screening results in a high likelihood that further testing, treatment and treatment-related decision making would be warranted.57 Urologists may at times underestimate the psychiatric comorbidity in prostate cancer, and there are many patients that have a few isolated symptoms that have not been diagnosed and hence may not receive treatment.58 Anxious preoccupations and strained marital relationships with spouses have been reported.59 Body image, spouse affection, spouse worry, along with cancer distress and cancer acceptance were some other anxiety-related areas causing psychological distress in prostate cancer.60, 61, 62 It is essential that urologists receive training in the screening and identification of various psychological problems seen in prostate cancer to enable faster diagnosis and referral to the psychiatry unit for prompt management in such cases.
Psychological issues in prostate cancer related to developmental life stages and QOL
The couple's life stage and experience in prostate cancer
For many couples, by the time prostate cancer sets in, children are maturing and leaving home, leading to fewer responsibilities around the house, an increased desire for companionship and possibly new levels of intimacy and sexual desire. Some couples find the increased time together stressful, as they work to renew their relationship. The occurrence of an illness during this 50- to 64-year-old phase may force early retirement and produce feelings of anger and frustration related to being cheated of a full career and a physically and financially healthy retirement. In spite of the fact that some people are retiring earlier than in previous generations, work continues to be a major source of social status, self-esteem and social contacts, as well as a source of financial well-being.63
Role strain is a problem with the late middle-aged spousal caregiver. The late middle-aged caregiver is at risk for negative effects on well-being because of the multiple role responsibilities in the family and work. Her spouse's urinary incontinence and sexual impotence create a need for her to find new ways to share intimacy and may strain the marital relationship if the couple is not able to successfully adapt. Young–old caregivers are at risk for emotional strain related to a constant worry about the patient's health status and concerns about being left alone. Lack of energy or urinary problems can cause couples to change their normal patterns of socialization and create loneliness for the caregiver. Caregivers are often reluctant to share their feeling about the patient's condition with their patient because of worry about how he will react. In addition to their own chronic illnesses, the old–old caregiver often takes on added responsibilities within the home, as a result of her husband's diminished energy. Research has demonstrated the negative effects on physical and psychological health of the old–old caregiver in many populations, but little is documented in the prostate cancer population.64
Even if the man is considered cured of prostate cancer, his functional level may be diminished, as a result of specific treatment complications. These problems can influence the couple's ability to successfully complete the tasks of their developmental stage, resulting in frustration and decreased satisfaction with life. Couples younger than 65 years are at greater risk for negative physical and psychosocial effects from diagnosis and treatment of prostate cancer than couples aged 65–74 years. Men older than 75 years often experience less negative reactions to diagnosis and treatment; however, because of advancing age they recover more slowly. Finally wives in all ages experience distress related to worry, but the greatest negative reaction is reported in the young–old group. Further research is required to validate these assumptions.65
There are various limitations to research and findings in this area. First, there are few studies of the prostate cancer population that consider the developmental life stage of the couple. Although prostate cancer studies have looked at outcomes related to the type of treatment, participants’ outcomes have been studied as group findings rather than as age-specific findings. Recommendations do not identify the needs related to the developmental phase. Second, the majority of the studies on prostate cancer patients examined age groups covering a large span of time (50–86 years). Wide-range categorization decreases the information available for age-specific issues that may affect the HRQOL in these couples. This has created a potential for unmet needs of these patients and their families, and it has limited the opportunities to develop interventions that meet the needs of couples within an age group. Third, research studies in this review of literature, whether very large or relatively small, were not ethnically diverse. In all but a few studies, participants were predominately Caucasians, with only small samplings of men from other races. Consequently, inferences made on the basis of this literature review may not accurately reflect the issues of couples of other races. Finally, there is little research on caregivers in the prostate cancer population in general, and there is no age-specific research within the prostate cancer caregiver population. The effects of living with prostate cancer and treatment-related problems have been studied in populations of men, and more recently in couples, in an attempt to understand how this experience is managed. However, more research is needed to address the difficulties facing the spouses of men with prostate cancer, and how the effects on patient and caregiver interact with developmental issues.66
Psychosocial aspects of HRQOL in prostate cancer
Apart from the general worries of a new cancer diagnosis, there is still controversy about the selection of primary treatments for prostate cancer, making the decision about treatment difficult.67 For early-stage cancer, primary treatment options are radical prostatectomy, radiation therapy and active surveillance, which can lead to differences in specific areas of functioning, such as sexual, urinary or bowel functioning over time.68 Because surgery and radiation treatments seem to be equally effective in treating early-stage prostate cancer, controversy exists about selection of primary treatments for prostate cancer.69 Early treatment decisions are fraught with the sense of having to choose between QOL and longevity, even though it is unclear what the outcome will be on either side of the balance.70 Many men entertain multiple second opinions regarding their primary therapy, although this for some men adds to more confusion and distress because of the lack of agreement among practitioners.71 They often take in information from reasonable and reliable sources and any number of unverified sources on the internet. This amount of information can lead to significant anxiety while trying to make a reasonable treatment decision.72
The side effects of treatments and medications used for prostate cancer, such as hormonal therapy, steroids and pain medications, can cause distress as well.73 The side effects of hormonal therapies can be particularly distressing for otherwise asymptomatic men. These side effects include hot flashes, osteoporosis, anemia, fatigue, sarcopenia, gynecomastia, loss of libido, ED, risk of diabetes, risk of cardiovascular disease and fatal cardiac events, as well as possible emotional distress.74 Recently, review articles discussing the side effects of androgen ablation therapy have stated that this treatment also impacts cognitive functioning.75
HRQOL is not only synonymous with health status but also encompasses the reactions to coping with life circumstances, in this case cancer (living with it, living after surviving or coming to terms with cancer). The QOL of a patient will be determined by the mental and physical status before diagnosis, attitude toward your disease, willingness to make compromises, undergo therapy and take advantage of every supportive care service that will help reduce stress and increase coping skills, the stage of disease at the time of diagnosis.76 HRQOL is a multidimensional construct that deals with physical, emotional, social and functional well-being from both an observers and a patient's perspective. It deals not only with disease-specific physical complications but also examines the impact of treatments and treatment decisions on a patient's everyday existence.77
The HRQOL of men with prostate cancer encompasses both disease-specific and general aspects. The disease and its treatments can affect both of these areas; however, effects differ across stage of disease, time and type of treatment. In men treated for localized prostate cancer, disease-specific domains, such as urinary, sexual and bowel function, are the most profoundly affected, whereas with some exceptions, general HRQOL is spared.78
HRQOL issues in men with more advanced-stage disease are quite different. Longitudinal studies have indicated that few urinary and bowel problems occur for these men either before or after treatment.79 Furthermore, results of longitudinal studies indicate that men treated for advanced disease have heightened sexual dysfunction both before and after treatment, indicating that some sexual problems are disease related. As men with more advanced disease are faced with the possibility that death could occur within a year of diagnosis, sexual function may be less of a priority.80
In contrast to men with localized disease, general HRQOL deficits are observed in men with advanced disease. One comparison group study suggests that irrespective of treatment, progressing disease is related to more bodily pain, less vitality or energy and poorer social and emotional well-being than disease in remission.81 Longitudinal studies show that deficits in social and emotional well-being occur in men treated with either surgical or medical castration in the first 6 months after treatment. Yet substantial improvements occur in these domains after 1 year. Notably, this may be an artifact of survival.79
Clearly, additional studies of prostate cancer and HRQOL are needed. There is a particularly pressing need for more research of men with advanced disease. Advanced prostate cancer seems to affect numerous areas of HRQOL. Studies of medical treatments, such as hormone therapy, often target response to treatment and time to disease progression as a primary end point. Although unarguably important, these are not the only indicators of treatment efficacy. It is also important to determine the varied effects of treatment on HRQOL. Thus, future research should address not only what treatments result in a clinical response or delay time to progression, but also which ones have the best chance of maximizing HRQOL. Moreover, an understanding of the interrelation among HRQOL domains will be critical.82
Related to issues of treatment impact on HRQOL is the issue of decision making about treatment. As all treatments for prostate cancer involve a risk/benefit trade off, it will be important to clarify how patients make treatment decisions. It would be important to study how QOL information enters into the decision-making process.
Finally, interest has grown recently in the identification and treatment of psychological distress in men with prostate cancer. A study suggests that many distressed prostate cancer patients go untreated because there are no suitable means available for identifying their distress.83 They piloted a rapid screening procedure that uses two pencil-and-paper self-report measures to detect distress: the hospital anxiety and depression scale84 and a ‘distress thermometer’. The approach was successful in identifying patients in need of psychological intervention.
As the number of new cases of prostate cancer grows, it will be important for clinical investigators and health-care professionals to work collaboratively to educate men and their families about the consequences of the disease and its treatments for HRQOL. This is particularly important given that several options for treatment exist. Knowledge of the potential risks and benefits of therapeutic choices will help men and their families make informed decisions about their illness. Ultimately, any course of therapy must meet both the physical and psychosocial needs of both the man with prostate cancer and his family.85
The role of self-management in prostate cancer
Self-management has been increasingly recognized as an important support to health management in chronic disease, evidence suggesting that it can improve health status in a range of conditions. The concept of self-management, however, is often confused with self-care, but there is a difference. Self-care refers to an individual's self-generated actions or behavior intended to enhance health and well-being, prevent disease, limit illness and restore health, usually with minimal involvement from health-care practitioners.86 Self-management, in contrast, encompasses an interactive process whereby individual responses and behavior aimed at managing physical and psychosocial consequences of symptoms and treatment are guided by a clinician, often involving therapeutic approaches.87 To be successful, self-management needs to convey the ‘ability to monitor one's condition and to affect the cognitive, behavioral and emotional responses necessary to maintain a satisfactory QOL. Many self-management interventions aimed at empowering cancer survivors by providing information, education and practical strategies to enhance well-being have been developed and tested over the last decade.88
A range of intervention and study elements have emerged that are defining features of a self-management program and which are crucial to address whether programs are going to be successful. Targeting programs to men's needs is one of the most important issues to be considered. Men's needs differ in emphasis across the disease trajectory, distress being most apparent in relation to diagnosis and adjustment, and symptom problems being particularly salient after treatment. Targeting men with homogenous levels and types of need within a sample is of greater relevance to participants and promotes intervention effectiveness; alternatively, this can be achieved by tailoring an intervention to identify individual needs and address each participant's requirements individually. The needs also differ in terms of education, economic status, social supports and ethnicity. These factors should also be taken into account explicitly in targeting and evaluating programs.89
Motivation is a key component of any self-management intervention. For successful self-management, not only should participants feel that an intervention is relevant to the problems they are experiencing, but also they should be motivated to engage with the intervention in practice and over time. Participants are more motivated when they embark on an intervention at a time when they are receptive and determined. In terms of theoretical constructs, self-efficacy is the most prevalent construct employed across the studies, but with inconsistent outcomes. Very few studies that incorporated it found that self-efficacy was affected by, or could explain, the intervention effect. Further theoretical constructs that have been tested across these studies also need to be considered and researched in more detail, in particular interpersonal sensitivity may have an important role in mediating self-management effectiveness.90 Cognitive–behavioral training used in these studies was positively linked with effectiveness of intervention and suggests a relevant and fruitful approach to delivery.91 Group sessions have been effective among prostate cancer survivors, as indeed they have among other populations of male patients, but the personal nature of men's issues in prostate cancer survivorship suggests that many men will benefit from one-to-one involvement within an intervention.92 An intervention offering both opportunities would be valuable. Performing as many self-care tasks as possible will help develop independence and self-esteem. Feeling dependent on others can be defeating, and a certain satisfaction can be gained from setting objectives in life and accomplishing them. Recovering from an illness or injury is certainly one of these accomplishments.93
The role of support groups in prostate cancer
In the last decade, various self-help and support groups have stemmed across the world for patients suffering from prostate cancer. The self-help concept stems from the assertion that people facing a similar challenge can help each other simply by coming together. The power of this approach lies in the belief that a collective wisdom is born through the shared experience of participants rather than through the professional training or style of the leader.94 The kinds of help requested and offered in this context are largely free of professional structures or assumptions. Self-help group participation costs its members little or nothing.95 Studies among prostate cancer patients indicate that social support leads to better mental health,96 less psychological distress or even prolonged survival.97 For a growing group of prostate cancer patients, support groups, either self-help or professionally led groups, are becoming a way to find social support. A common feature of these groups is the emphasis on education and information exchange,98 although sharing of personal emotions is also valued. The groups are mostly very positively evaluated by participants, and studies found a positive effect on psychosocial well-being or even improvements in immune parameters.99 Further research regarding the factors that influence the need for and the actual use of social support groups may lead to insight in the psychological and the practical barriers for participation of prostate cancer patients in support groups. On the basis of on this information, interventions can be developed or advice can be formulated to make these support groups available for more prostate cancer patients.100
Factors that contribute to a higher interest in participation are a lower age, a higher socioeconomic status, lack of social support, a more positive attitude toward group participation and a higher perceived control. Factors predicting actual participation are the number of prostate-specific problems and perceived control. Perceived control also involves the physical distance that a patient is willing and able to travel. Physical distance is a major barrier to support group participation.101 Many prostate cancer patients experience psychosocial problems and a serious decline in QOL in the first year post diagnosis; however, a few men do in fact have interest in support groups or do participate. One factor is the lack of awareness of the possibilities to join a social support group.102 Urologists or urology nurses could ask prostate cancer patients about their attitude toward group participation and must explain the benefits and give information about the patient association or support groups. The medical caregivers should also be alert on the social support system of the patient. If this system appears to be inadequate, referral to supportive care, for instance, in the form of a support group might be considered. Concerning the content of and advertising for support groups, the educational aspects of groups should be emphasized, as that is initially the main area of interest for a man with prostate cancer. Providers of support groups for prostate cancer patients should also be aware of the impact of geographical distance on the possibilities of group participation by older patients.103
The role of trained nursing staff in the psychological well-being of prostate cancer patients
Trained nursing staff form an integral part of any oncology unit. They often spend more time with the patient and his family members than the treating doctor does. Very often family members may pose many questions to the nursing staff rather than the treating doctor and it is essential that correct answers are received. The nurse managing a patient with prostate cancer must be trained and equipped with the knowledge of various treatment modalities used in the management of the disease and the various side effects that may arise post treatment. This may help in alerting the clinician if any of the side effects ensue. The nurse must also be equipped to deal psychologically with the patient and help allay his anxieties and fears regarding treatments and long-term outcomes. Handling anxious relatives who are overconcerned should also be part of one's nursing skills.104 Knowledge about the longitudinal course of prostate cancer, urinary and sexual complications, chemotherapy and its side effects, along with psychological issues that arise in prostate cancer, may assist a patient in getting the required help when such complications occur. The nurse may be effective in screening patients who need psychological help, psychosocial interventions and support group enrollment, and may thus direct the patient and relatives correctly. Symptom assessment done in a proper manner by nursing staff may aid the clinician in a valuable manner in planning further interventions for any patient.105
Men undergoing treatment or early detection of prostate cancer experience uncertainty related to the time course of cancer, and others fear treatment or treatment-related side effects. Urologists need to consider the family, social and psychological perspectives when making treatment decisions in prostate cancer. The management of anxiety, depression and other psychological problems in these groups require a multidisciplinary and multimodal approach. Psychiatrists and psychologists may team up as diagnostic consultants in monitoring psychiatric morbidity and adjuvant psychotropic medications, as well as providing appropriate psychotherapy where needed for both patients and their families. A thorough understanding of the complex and vexing problems faced by patients with prostate cancer may help the psychiatrist in assisting this group of patients. It is necessary that psychological issues in patients with prostate cancer be addressed with the aim of enhancing HRQOL and cancer-related recovery in these patients. It is also prudent to mention the role of supportive nursing staff in helping the patient cope with prostate cancer, various treatment procedures and to provide support to the caregivers in general.
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The authors declare no conflict of interest.
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De Sousa, A., Sonavane, S. & Mehta, J. Psychological aspects of prostate cancer: a clinical review. Prostate Cancer Prostatic Dis 15, 120–127 (2012). https://doi.org/10.1038/pcan.2011.66
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