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.
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.
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.
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.
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. 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. 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. 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. 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. 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.
The side effects of treatments and medications used for prostate cancer, such as hormonal therapy, steroids and pain medications, can cause distress as well. 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. Recently, review articles discussing the side effects of androgen ablation therapy have stated that this treatment also impacts cognitive functioning.
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. 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.
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.
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. 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.
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. 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.
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.
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. They piloted a rapid screening procedure that uses two pencil-and-paper self-report measures to detect distress: the hospital anxiety and depression scale 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.
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. 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. 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.
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.
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. Cognitive–behavioral training used in these studies was positively linked with effectiveness of intervention and suggests a relevant and fruitful approach to delivery. 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. 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.
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. 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. Studies among prostate cancer patients indicate that social support leads to better mental health, less psychological distress or even prolonged survival. 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, 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. 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.
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. 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. 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.
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. 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.
Prostate Cancer Prostatic Dis. 2012;15(2):120-127. © 2012 Nature Publishing Group