According to statistics reported in the U. S. Renal Data System for the year 2000, just under 379,000 Americans suffered from end-stage renal disease (ESRD), which required renal-replacement therapy. The leading causes of ESRD in the United States are diabetes, which accounts for 35 percent of all American cases, and hypertension, which accounts for 23 percent of all American cases. Diseases of the kidneys (e.g., glomerulonephritis, polycystic kidney disease) can also lead to ESRD. Healthy kidneys perform many functions necessary for life: eliminating toxic metabolic wastes and excess fluids, maintaining normal blood chemistries, and producing hormones to control blood pressure and manufacture red blood cells. ESRD is the final stage of progressive kidney failure, when the extent of nephropathy (destruction of kidney cells) renders the kidneys unable to function at the minimum level necessary for life. Serious symptoms will then occur. Accumulation of fluid in the body causes high blood pressure, shortness of breath, and swelling. The build-up of metabolic waste products in the blood results in uremia, the symptoms of which include poor appetite, nausea and vomiting, and difficulties with mental capacities. Fatigue is common due to anemia (abnormally low levels of red blood cells). Other symptoms of ESRD include weight loss, weakness, changes in sleep patterns, itching, muscle twitching or cramps, and changes in skin color. If left untreated, ESRD leads to death.
Currently, ESRD can be treated (but not cured) with renal-replacement therapies that carry out some of the normal kidney functions: dialysis and transplantation. Two types of dialysis are available: hemodialysis and peritoneal dialysis. The majority of ESRD patients are treated with hemodialysis. This form of renal-replacement therapy involves connecting the patient to a hemodialysis machine, which then continuously circulates the blood outside of the body through a dialyzer (artificial kidney), a filter that removes wastes and excess fluid from the blood. This procedure takes 3-5 hr to complete and is usually performed three times a week. In continuous ambulatory peritoneal dialysis, a special solution is infused into the abdomen through an implanted catheter. The solution is left in the abdominal cavity for a period of approximately 4 hr to absorb toxins from the blood through the peritoneal membrane, which acts as a natural filter. The solution is subsequently drained out of the abdomen, and fresh solution is reintroduced. This procedure must be performed three to four times a day by the patient. Transplantation involves surgically implanting a healthy kidney obtained from a donor (a living relative or friend of the kidney recipient, or a cadaveric donor, a recently deceased person). In addition to renal-replacement therapies, patients must follow strict dietary and fluid-intake regimens as well as medication regimens to control blood chemistry changes, prevent dangerous fluid overload, and keep red blood cell counts within acceptable ranges. Epoetin, a synthetic version of a hormone, erythropoeitin, produced by the kidneys to stimulate red blood cell production, has led to improvements in ESRD patients’ fatigue and capacity for physical activity.
Adjustment to ESRD and Its Treatment
Renal-replacement therapies prolong survival in people with ESRD. Success in extending the duration of life with chronic kidney disease, though, has been met by an increasing emphasis on quality of life because the disease and its treatments are associated with medical and lifestyle challenges. Despite effective treatment, people continue to experience physical and medical problems. A number of people do not feel as well as they did before the onset of ESRD. The treatments also require major lifestyle changes. Maintenance hemodialysis, for example, requires a substantial amount of time for treatment sessions throughout the week. The strict dietary and fluid-intake restrictions can be difficult to maintain. Treatment side effects (e.g., fatigue, weakness) can reduce the capacity for active involvement in important areas of life. In addition, some of the psychosocial challenges facing people with ESRD can include changes in self-image as a result of being unable to live up to expectations at work, in the family, or in social relationships. Recreational activities can also be affected. A sense of helplessness and/or dependence on others can develop (e.g., on the medical team and often one’s partner). Other stressors include changes in body image and the stigma of being a chronically ill person.
Despite these challenges, the majority of ESRD patients adjust well in terms of physical, psychological, and social outcomes, although some report poorer quality-of-life outcomes than healthy people. Elderly patients on dialysis often report better adjustment than do younger patients, who may view ESRD and its treatment as obstacles that make it more difficult to achieve valued life goals. People who are most likely to be distressed include those with more severe illness or those with additional illnesses beyond ESRD (e.g., diabetes, heart disease), a prior history of depression, or little social support. Emotional distress may be associated with fatigue and with feelings of uncertainty about one’s future. However, some of the symptoms attributable to the biomedical disease process in ESRD (e.g., weakness, sleep disturbance, loss of libido) are similar to those associated with depression in physically healthy people. Such symptoms could thus be due to the effects of the kidney disease, depression and distress, or both.
Illness Intrusiveness of ESRD and Its Treatment
Although as many as 25 percent of ESRD patients experience clinically significant psychiatric problems, the majority of people continue to pursue important goals and lead meaningful lives. Adaptation to life with ESRD depends on the degree to which one can minimize the effects of illness intrusiveness, or illness- and treatment-induced disruptions to valued activities and interests in a person’s life. ESRD can interfere with the relationship with one’s partner, family roles and responsibilities, work and financial status, social relationships, recreational activities, and religious and community activities. The greater the extent of illness intrusiveness (i.e., the less able one is to participate in valued activities and interests because of ESRD and/or its treatment), the more distressed and dissatisfied a person will be about his or her quality of life.
The level of illness intrusiveness associated with ESRD depends in part on the type of renal-replacement therapy one receives. Compared to hemodialysis, for example, successful kidney transplantation is associated with fewer medical symptoms, physical limitations, and fluid and dietary restrictions, less fatigue, and more freedom. Transplant recipients are thus freer to engage in daily activities and to fulfill role responsibilities within the family and in work, social, and other areas of life. Consequently, although some transplant patients may report continuing anxiety and depressive symptoms long after the transplant, most indicate better health, less distress, and greater well-being and quality of life than those treated by hemodialysis.
In contrast, hemodialysis patients experience more physical limitations and lower emotional well-being, especially at the beginning of treatment, than do people on peritoneal dialysis or transplant recipients. Hemodialysis patients who subsequently receive a kidney transplant also reported better quality of life with the transplant. The strict dietary and fluid-intake restrictions associated with hemodialysis are difficult for many people to follow completely. Although the regimen associated with transplantation is less onerous, the procedure is not always associated with better outcomes. One study found that people on home hemodialysis reported better quality of life than transplant recipients, who required more hospitalizations than their counterparts on dialysis. Transplantation is also not without its complications. Transplant recipients are often concerned about side effects of medications, susceptibility to infections, transplant rejection episodes, and fear of losing the transplanted kidney. In general, ESRD patients’ noncompliance with aspects of their treatment plans are of great concern to medical professionals because of their negative effects on health and posttransplant functioning. Much research has been devoted to finding ways to increase patients’ compliance with their treatment plans, such as increasing their self-efficacy, their sense of being able to maintain compliance.
One important objective for people with ESRD is to maintain their capacity to continue or return to work. This is a key issue for rehabilitation for many reasons, including maintaining financial stability and engaging in productive activity. Involvement in work can also benefit self-image. Many people, though, may be unable to work due to fatigue, other functional disabilities, and the significant time demands associated with dialysis (9-15 hr weekly for the treatment, not including associated tasks). It has been estimated that only 10-50 percent of ESRD patients return to work after starting renal-replacement therapy. People who are more highly educated and those in white collar positions are more likely to return to work than those with lower levels of education or employed in positions with lower occupational prestige. However, blue collar workers can benefit from programs designed to increase occupational rehabilitation: In one study, blue collar workers who received such an intervention were almost three times as likely to return to work than those who did not.
The quality of interpersonal relationships and social support from family members and other important individuals (including medical caregivers) is also critical to adjustment in ESRD. Satisfaction with the care received from physicians and nurses has been found to be fairly high overall. The majority of people indicate that they receive high levels of support from family and friends. Familial and social support, in turn, is related to less physical dysfunction, better compliance with dietary restrictions, and better posttransplant adjustment. On the other hand, ESRD and its treatment can place a strain on a patient’s partner and other family members. The healthy partner may be required to shoulder new responsibilities, including the dual roles of caretaker and family breadwinner when the patient is too ill to continue working. Sexual desire and sexual functioning can be affected by ESRD and its treatment, especially in men. Kidney transplantation can lead to improved sexual functioning, but even transplant recipients continue to experience difficulties. In general, how one’s partner reacts to the illness influences a patient’s adjustment. Patients and their partners typically show similar levels of adjustment. This, in turn, may affect the general psychosocial adjustment achieved by the family. If the patient’s level of adjustment does not match the expectations held by family members or treatment staff, psychological adjustment can be negatively affected.
How people cope with the stresses of their illness and treatment has received some attention in recent research. Active, problem-solving coping strategies appear to be most effective in increasing psychosocial adaptation and adherence to the treatment regimen. These strategies involve addressing the underlying difficulty responsible for one’s problems and taking steps to “solve the problem.” Such coping tactics include (but are not limited to) acquiring information about the disease and its treatment, raising concerns with medical service providers, keeping up to date on one’s health, and participating in the treatment. In addition to increased effectiveness in resolving problems that are indeed manageable, active problem-solving coping may help to cultivate a more general sense of control. Maintaining a sense of control over one’s life, including one’s illness and health, is related to better psychological adjustment and treatment outcomes. Some researchers have found, though, that adjustment and adherence to treatment regimens depend on whether the demands of the treatment “match” the ways that person typically copes with stress. For example, people who prefer to be actively involved in their treatment do better when they are allowed to control their treatment (e.g., home hemodialysis) than when they do not have such control (e.g., hospital hemodialysis, where medical staff conduct the treatment). In contrast, patients who prefer a low level of involvement in their treatment do better with hospital hemodialysis than home dialysis. In this respect, avoidant types of coping can be an effective means of coping for some patients when the treatment situation does not require active participation (Fricchione et al. 1992).
Psychosocial Interventions for ESRD Patients
In developing treatment plans for people with ESRD, adjunctive interventions can be included to improve psychosocial adjustment, physical functioning, and participation in important areas of life as much as possible. Interventions to help predialysis patients and patients already on dialysis to prepare for and adjust to the demands of ESRD and its treatments can be useful. Educational programs can increase knowledge about ESRD and alternative renal-replacement therapies. Skills-building programs can help people to develop skills needed to manage aspects of their treatment. Providing such information to ESRD patients can produce important benefits, at least in the short term. Benefits include increased illness-related knowledge, reduced distress and functional disabilities, extension of time before renal-replacement therapies are required, and increased likelihood of returning to work after the initiation of maintenance dialysis. In one study, dialysis patients who participated in regular support group meetings survived longer than those who did not!
Because ESRD and the various renal-replacement therapies exert a significant impact well beyond health, treatment planning must address the psychological, emotional, and social consequences of ESRD as well as the biomedical aspects. Multi-disciplinary nephrology treatment teams include the physicians and nurses who provide direct medical care and allied health professionals such as dieticians, social workers, psychiatrists, psychologists, and occupational therapists. By reducing the illness intrusiveness of ESRD in all areas of the patient s life as much as possible, the goal is to maintain participation in meaningful activities and to substitute new interests when existing ones are incompatible with one’s new life as an ESRD patient, maximizing long-term adaptation and preserving quality of life.
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