Chronic Illness

Patterns of health, sickness, and death differ dramatically among countries based on levels of economic development, health policies, and medical technologies. By the mid-1900s, people living in developed (industrialized) countries experienced a sharp decline in their incidence of acute, infectious illness and an increase in rates of chronic illness. The National Commission on Chronic Illness defines a chronic illness as having one or more of the following characteristics: It is long-term or permanent; it leaves a residual disability; its causes, natural course, and treatment are ambiguous; it is degenerative; it requires special training of the patient for rehabilitation; and it requires a long period of supervision. Examples of chronic illness include asthma, allergies, heart disease, diabetes, hypertension, stroke, cancer, cystic fibrosis, sickle-cell disease, varicose veins, arthritis, cirrhosis of the liver, renal disease, and mental illness. As these examples suggest, chronic illnesses range in severity from those that are relatively mild and can be controlled by medical therapies and changes in health behaviors to those that are severe, degenerative, and terminal, causing disability and creating the need for long-term, extensive medical care. Chronic illnesses, now the leading cause of death in industrialized countries, often develop gradually due to a combination of environmental, genetic, or social factors. In many cases, the specific cause of a chronic illness cannot be determined, and its diagnosis and treatment can be difficult. This shift in the disease burden from acute to chronic illness has several important consequences. First, it accentuates global disparities in health and wellbeing, as most people living in less-developed countries have shorter life spans and high rates of death from acute, parasitic, infectious, and/or poverty-related illnesses. Second, chronic illness challenges the assumptions of modern medicine which, based on the "germ theory" of disease, has focused on finding cures for short-term illnesses with clear causes. Finally, the rise of chronic illness has increased the role of families in providing care for their sick and/or disabled members and caused governments to reassess their health policies.

Sickness in Historical Context

Sickness and death historically were caused mostly by poor nutrition, inadequate housing, unsanitary living conditions, poverty, warfare and—as population density and urbanization grew—exposure to bacteria, parasites, and communicable diseases. These conditions gave rise to acute illnesses such as influenza, scarlet fever, whooping cough, polio, pneumonia, and tuberculosis. In most cases, acute illnesses occur suddenly and are characterized by a sharp increase in discomfort and pain due to an inflammation, and are of short duration. Whether endemic or epidemic, these illnesses contributed heavily to the high mortality rates and short life spans among persons living in pre-industrial societies. Notable among acute, communicable diseases was the bubonic plague, which caused more than 20 million deaths in Europe between 1340 and 1750 (Cockerham 2001). Prior to the 1900s, acute health conditions rarely could be treated successfully by medical therapies, so they were self-limiting, as they led to either spontaneous recovery or to death within a fairly short period of time. Access to doctors was limited, as were effective medical therapies, so families usually took care of their own sick members; however, the duration of that care tended to be relatively short. By the 1700s, however, industrialization, modernization, new medical technologies, and public health measures were transforming the lives of people living in many Western countries. These forces eventually restructured the workplace, produced a system of monopoly capitalism based on class and wealth, and created a global economy dominated by a handful of industrialized nations. One result of this uneven level of economic development has been substantial disparities in wealth and health among populations living in developed countries and those living in less developed, or developing countries.

In its early stages, industrialization resulted in a rapid deterioration in the living standards and working conditions of most people living in Western countries. Traditional families and economic systems were disrupted as populations migrated into urban areas in pursuit of employment. The lack of clean water and sanitation, the spread of environmental toxins, population concentration, malnutrition, and the nature of industrial work increased sickness and death from contagious diseases. Gradually, public health measures and improvements in diet, housing, water supplies, and sanitation reduced the spread of deadly diseases in these countries. However, as their economic and military dominance grew, industrialized countries rapidly gained control over many underdeveloped countries. Through colonialism and the exploitation of material and human resources, these countries lost control of their economies and suffered dramatic increases in infectious diseases and death. Today, level of economic development has become a major predictor of patterns of health, illness, and death: People living in developed countries usually have better health profiles and longer life spans than those living in developing countries. Life expectancy at birth now ranges from a high of more than eighty years of age in developed countries to less than fifty years in some developing countries (Population Reference Bureau 1998). This gap in life expectancy is largely due to the fact that people in developing countries are still disproportionately affected by acute, infectious, and/or parasitic illnesses that lead to early death. Only about 1 percent of people in developed countries die from infectious and parasitic diseases, compared to 43 percent of those in less developed nations (Weitz 2001).

People in developed countries have experienced the "epidemiological transition"—a shift in the disease burden from high rates of death from acute, parasitic, infectious diseases, and short life expectancy to longer life expectancy and high rates of chronic diseases. The first phase of the transition consisted of improvements in hygiene, sanitation, living conditions, and nutrition, which curtailed the spread of contagious disease. Many less developed societies (e.g., Sri Lanka, Cuba, Costa Rica, Kerala, and China) have substantially increased life expectancies through these measures, and by providing greater education, independence, and family planning resources to women (Caldwell 1993; Hertzman and Siddiqi 2000). The second phase in the transition was the rise of scientific medicine. Medical inventions and discoveries during the mid-1800s, especially in Germany and Austria, led scientists and physicians to reformulate the problem of disease and focus on medical intervention to heal diseases. Rudolf Virchow's discovery of cellular pathology was a major breakthrough, as was Robert Koch's and Louis Pasteur's confirmed the link between bacteria and illnesses (Cockerham 2001). At that time tuberculosis, known as the "white plague," was still the leading cause of sickness and death in Europe and the United States. Koch isolated the germ that caused tuberculosis and Pasteur, proving that many diseases were caused by the spread of bacteria, advanced the use of vaccinations to prevent diseases.

Advances in medical science, the development of more accurate diagnostic technologies, and use of antiseptic surgery, gave birth to modern scientific medicine. The germ theory of sickness became the basis of medical practice and the medical approach to dealing with disease. Scientific medicine's success at reducing infectious disease generated great enthusiasm that a cure for virtually all diseases would eventually be found. Pursuit of the "magic bullets" of medicine, or drugs that would "miraculously" heal diseases, became the focus on medical science. Control over contagious diseases and the germ theory of sickness gave rise to a specific conceptualization of health and illness described as the medical model of disease. The medical model of disease assumes there is a sharp and clear distinction between illness and health, based on the belief that sickness can be readily detected by diagnostic tests and confirmed by physicians. Because it is based on acute, infectious diseases, this model also assumes that diseases have specific causes and clearly distinguishing characteristics, and that they can be healed by medical therapies (Mishler 1981).

The development of modern medicine, combined with an expansion of industrialization and specialization, directly affected families in Western nations. Families in agricultural societies were typically large and multi-functional entities that emphasized economic self-sufficiency through the productive labor of all family members. Industrialization, however, moved economic production from homes to factories, excluded women from the workforce, and created the ideology of the breadwinner-homemaker family as best suited to the needs of the industrial economy. One of the most important changes was the loss of family functions. Families were redefined as specialized institutions with two important functions: raising children and meeting the emotional needs of its members. The modern nuclear family was seen as too small and emotionally bonded to effectively care for their sick members, and it was admonished to leave medical care in the hands of professionals. Talcott Parsons, a leading sociologist of the 1950s, argued that the use of physicians and hospital care was functional for families in that it protected them from the disruptive aspects of illness and helped motivate the sick person to get well (Parsons and Fox 1952). Parsons's family theory was consistent with his concept of the sick role, which described the social expectations governing the behavior of sick persons. Essentially, sick people were seen as exempt from their usual social responsibilities but obliged to try to get well, specifically by seeking competent medical advice and complying with medical treatments. The sick-role concept reinforced the medical model by assuming that illness was a temporary departure from health that was best handled by doctors and health care institutions. By the 1960s, however, these theories were being challenged by the growing prevalence of long-term, chronic health conditions.

The Rise of Chronic Illness

Control over acute, infectious illnesses has led to longer life spans for many populations, but also growing rates of chronic illness. Chronic illnesses, however, are not randomly distributed in populations. Although level of economic development is a major predictor of health and life span, patterns of sickness and death also vary within countries based on factors such as social class, age, gender, and race. Wealthy and middle-class people in all countries have better health profiles and longer life spans than those who are less affluent (Fosu and Subedi 1996; Reid 1998) and, in both developed and developing countries, high levels of economic inequality predict higher rates of early death (Lobmayer and Wilkinson 2000). The bulk of the disease burdens falls to the poor and lower classes in all countries, as they are most likely to experience malnutrition, poor living and working conditions, and stressful lives. Acquired immunodeficiency syndrome (AIDS) is a chronic illness that has reached epidemic proportions in parts of Africa, and poverty among some groups in the United States has been associated with a resurgence of acute, infectious illness. Age is also a crucial variable in the distribution of chronic illnesses, as longer life spans help account for the prevalence of chronic conditions. In most developed countries, the number of elderly (over age sixty-five) people has grown tremendously. Among the elderly, a few chronic illnesses, specifically stroke, cancer, and heart disease, are the leading causes of death, whereas arthritis and diabetes cause most sickness (Weitz 2001). This pattern is reversed for children, however, who are affected by more than two hundred different chronic conditions and disabilities (Ireys and Katz 1997). At least partially because they live longer, women in developed countries have higher rates of chronic illness than do men, although they are less likely than men to have life-threatening chronic illnesses. Finally, race-ethnicity affects health and access to health care, with marginalized racial groups experiencing more sickness and early death than dominant racial groups. Much of the racial difference is due to higher levels of stress and poverty, and less access to health care (LaVeist 1993; Williams 1990). As Wagar Ihsan-Ullah Ahmad (2000) notes, when racial minorities seek health care they are more likely to have their citizenship rights questioned, face language barriers, be blamed for their own health problems, and receive inadequate medical care (Ahmad 2000; LaVeist 1993).

The proliferation of chronic illness challenges the medical model of illness and the current organization and focus of medical care. The medical model of illness has traditionally focused on discovering the link between specific illnesses and their biological agents (e.g., "germs"). Chronic illnesses, however, are rarely the result of a specific pathogen. In many instances the symptoms and course of chronic conditions are variable and ambiguous, so getting an accurate diagnosis can be a long and difficult process. Persons with chronic illnesses often ignore the illness, self-medicate, and/or unconsciously adapt to the symptoms of the disease, especially if they are relatively mild (Charmaz 1991). Most symptoms of illness are treated without the assistance of medical experts: It is usually only when symptoms become persistent, disruptive, visible, and difficult to explain that physician care is sought (Mechanic 1995). Even after medical attention is sought, the gradual and sporadic appearance of symptoms or the unusual nature of the disease may make an accurate and early diagnosis difficult (Hill 1994). In the end, the patients may be diagnosed with diseases they have never heard of. As one patient pointed out:

After being sick, or knowing there was something wrong for nearly 17 years, I got a diagnosis of Progressive Systemic Sclerosis, which I had never heard of before. But I was so excited, I was so thrilled for this man to be telling me I had this disease! It was stupid, you know—to have an answer. It didn't matter that it is a potentially fatal disease. None of that stuff mattered! (Thorne 1993, p. 26)

The medical model of illness also has been primarily oriented towards an acute curative model of care that emphasizes emergency treatment and the use of advanced technologies (Thorne 1993). Chronic illnesses, however, are often long-term, incurable, and only rarely can they be prevented by direct medical interventions. The causes of chronic illnesses are often complex and/or ambiguous: Some, such as sickle-cell anemia (found mostly among Africans and African Americans) and Tay-Sachs disease (found among Jews of East European descent) have a genetic component. Others are tied to lifestyle factors or a combination of genetic and environmental factors. Sedentary lifestyles, tobacco and drug use, poverty, and exposure to environmental toxins all affect the likelihood of acquiring a chronic illness. The focus of care for most chronic conditions is managing the illness rather than healing it, yet patients often find no consistent relationship between adhering to medical advice and regimens and the course of the disease. Persons with sickle-cell disease, for example, are often advised to avoid physically rigorous activities, but as one victim pointed out:

I remember getting a [pain] crisis and I weren't doing nothing strenuous, and I weren't in the cold, and I wasn't doing nothing to bring it on. Basically I sat down and done nothing and I was still ill so I just couldn't do nothing to prevent it. That's what was making me so fed up with it. I mean, I don't know, what else are you supposed to do? (Atkin and Ahmad 2000, p. 51)

Because neither patient nor doctor experiences the gratification of a complete recovery, chronic illnesses have been described as medical failures. Patient compliance becomes a major issue because many medical therapies are expensive, inconvenient, and only marginally effective. The most salient feature of chronic illness is its permanency.

Living with Chronic Illness

There is considerable variability among chronic conditions in their severity, symptoms, and the extent to which they impose limitations on their victims. Some are relatively mild "lived-with" conditions that require lifestyle changes and/or compliance with medical regimens, whereas others are severe, life-threatening, and/or degenerative. In either case, the first step in living with chronic illness is emotional acceptance of the diagnosis and its implications. The diagnosis of chronic illness can generate intense emotional distress in patients and their families. Parents of chronically ill and/or disabled children often experience shame and guilt, and these feelings are exacerbated if they feel responsible for the condition. Their emotional distress is often manifested as feelings of extreme vulnerability, helplessness, and uncertainty over the future (Cohen 1993). As the mother of a fifteen-year old diabetic son said: "I was completely devastated, I was—just really couldn't believe it, like the rug had been pulled out from under me" (Williams 2000, p. 262). In most cases, these feelings wane as individuals accept the diagnosis and begin to cope with its implications. Some research, however, challenges the notion that people move through a series of stages that culminate in emotional acceptance of the illness. Parents may experience chronic sorrow, a "continuous sense of sadness that does not exhibit stages such as shock, anger, and guilt" (Shannon 1996, p. 322). Others deny the diagnosis for an indefinite period of time—often years. For example, a study of families with children who have sickle-cell disease found that mothers denied the diagnosis for a number of reasons—fear that it was racially motivated, the belief that their children were not like others who had the disease, and because they did not want to face the reproductive implications of passing the disease on to future children (Hill 1994). Although denial is typically seen as maladaptive, some research has indicated that denial can have beneficial effects, such as reducing psychological distress and allowing people to continue to participate in important roles and activities (Handron 1993).

Depending on the nature and severity of the condition, living with a chronic illness can prove extremely challenging. Psychologically, people with chronic illnesses experience a number of fears, for example, the fear of keeping their body and self-esteem intact, of losing love, relationships, and the approval of others, and of pain and discomfort (Miller 2000). Constant, recurrent, and/or unpredictable episodes of pain often cause feelings of loss of control. This pain can be constant and all-consuming, making symptom management and participation in everyday activities difficult. Peter E. S. Freund and Meredith B. McGuire (1991) have noted that chronic pain can jeopardize social relationships and lead to isolation, as it often invokes invalidating responses from others. The pain experienced by chronically ill persons often has no organic basis and cannot be verified medically, so others may doubt its existence. This can lead to loss of social relationships with others, as the empathy and support of friends and relatives begins to wear thin. Chronically ill people also have to contend with medical treatments and their side-effects, inexplicable remissions and exacerbations of the disease, and changes in lifestyles, activities, roles, and relationships. Some changes are relatively minor; however, others are substantial and are often experienced as a series of losses—of freedom, of hobbies, of employment, of physical appearance and abilities, and even of friendships. Many cause a loss of control over the body, which can lead to stigma and devaluation. In describing living with a chronic respiratory illness, characterized by lack of energy and breathlessness, Clare Williams (1993) sees the illness as causing "dwindling social and recreational lives; social isolation; problems of social interaction, stigma, legitimacy and the tolerance of others towards the condition; the threat or reality of 'dependency' . . . and problems pertaining to family life" (p. 130).

Chronic illness is accompanied by a great deal of uncertainty, since even with the best medical care, its course and severity can vary from patient to patient. Mothers of children with sickle-cell anemia experienced considerable uncertainty over how the disease would affect their children, especially when the diagnosis was made prior to the manifestation of symptoms (Hill 1994). Rose Weitz (1990) interviewed persons who have AIDS and found uncertainty to be a major theme. People living with AIDS experience a number of uncertainties: uncertainty about the meaning of illness symptoms, why they had become ill, their ability to function the next day, whether they would be able to live or die with dignity, and whether their health regimens would prolong their lives or heal the disease. Because self-image is integrally tied to the body and a sense of having control over it, the self-image can be dramatically altered by chronic illness.

Family Caregiving

Although modern family and medical ideologies of the mid-1900s argued the wisdom of greater reliance on physicians and medical institutions, the emergence of chronic illness has led to a reassertion of the importance of families in caring for the sick. Modern medical interventions and technologies that have extended the lives of chronically ill persons without affecting complete recovery have increased the responsibility of families for caring for the sick. Many chronic illnesses that once signaled early death (e.g., kidney failure) or institutionalization (e.g., mental illness) can now be managed by medical therapies administered in the home. Moreover, the escalating costs of health care in most countries has led to restrictions on access to physicians and medical facilities and fosters an interest in self-care and family care. Providing long-term care for chronically ill or disabled family members can disrupt the normal functions of families, and it almost always causes stress. Examining caregiving within the context of stress theory, Carol S. Aneshensel, Leonard Pearlin, and Roberleigh Schuler (1993) make a distinction between primary stressors, caused by performing the work required to care for the sick family members, and secondary stressors, problems that emerge in social roles and relationships as a result of caregiving. This distinction highlights the fact that caregiving work is not only stressful because it requires the performance of difficult physical and emotional tasks—for example, supervising, monitoring, encouraging, medicating, lifting, bathing, and feeding—but also because of secondary stressors: marital discord, social isolation, economic strains, and family dysfunction.

Family caregiving for children can start from birth and last indefinitely, especially if the illness or disability prolongs their dependency. Research indicates that about 20 percent of all U.S. children have a chronic illness or disability, and 10 percent have problems that create caregiving demands, including millions who are disabled (Butler, Rosenbaum, and Palfrey 1987; Sexson and Madan-Swain 1993). The amount of caregiving work performed by family members ranges from fairly minimal to extensive, depending on the nature of the illness. Many children have "lived-with" diseases such as asthma, epilepsy, or diabetes that cause episodic health crises, but can often be managed on a daily basis through special diets, medications, and changes in activities. Asthma, the most common childhood chronic illness in the United States, affects five million children and is a growing cause of sickness and death (Bleil et al. 2000). Asthma is episodic in nature, causing periodic bouts of breathlessness, wheezing, and coughing. A study of teenagers with asthma by Williams (2000) describes the caregiving role of mothers as "alert assistants" who monitor and supervise their children's compliance with medical treatments and manage medical crises. On the other hand, illnesses like kidney disease, cystic fibrosis, and spina bifida can be progressive and cause constant pain and impairment.

A great deal of research has focused on children with cystic fibrosis, the most common lethal genetic disease in the United States with an incidence of 1:200 white births (Solomon and Breton 1999). Cystic fibrosis, a progressive disease that leads to early death, requires extensive caregiving work, including "oral medications and special diets, aerosol therapy and bronchial drainage (prescribed two to four times a day, requiring about an hour each time), exercise, and mist tent therapy at night" (Patterson 1985). Providing such extensive care for their children can place a strain on interactions between parents and their sick children. C. Ruth Solomon and Jean-Jacques Breton (1999) observed parents of young children (ages one to two) with cystic fibrosis over a twelve-month period and found that, compared to parents of healthy children, they were more controlling, more serious, and less encouraging in their interactions with their children. Medical therapies are complex, difficult to learn, and can occupy so much time that they become the center of family life. They may also be risky and interfere with normal parental behavior, which ordinarily centers on being nurturing and supportive. One study of pediatric ambulatory dialysis found that parents have difficulty reconciling parenting with the administration of medical regimens:

Parents are asked to monitor the child's physical state intensely. They are also told not to allow the child's medical problems to become the main family focus. Parents are instructed that an error in the sterile technique could result in their child's serious illness, yet staff is also concerned that parents should not experience excessive anxiety. Parents are asked to function as both medic and parent, and yet it is also expected that the child will be able to progress through the normal stages of separation and individuation (LePontis, Moel, and Cohn 1987, p. 83).

In addition to the work and anxiety entailed in carrying out medical tasks, parents must also address the psychological and emotional needs of the child with chronic illness or disability. Although most children with physical disabilities do not develop mental health problems, they are much more likely to do so than healthy children because of greater social isolation, alienation, and poor school performance (Patterson and Geber 1991; Solomon and Breton 1999). Chronically ill children living in dysfunctional families exhibit much higher rates of psychiatric disorder than those living in well-functioning families (Bleil et al. 2000). Both parents and medical experts endeavor to prevent these problems by encouraging normal life experiences and bolstering coping skills, self-esteem, and confidence of children who are chronically ill. Parents must also try to maintain a sense of balance in meeting the needs of their ill and healthy children.

Longer life spans and an aging population have also made elder care a major responsibility of families. The United Nations (1993) reports that the populations of North America, Europe, Asia, and Latin America are aging at approximately equal rates and that by 2025 those age sixty-five and over will number more than 822 million—or about 10 percent of the global population. The bulk of caregiving work performed today is for the elderly, as chronic conditions, disability, and impaired health increase with age. Heart disease, cancer, stroke, arthritis, and dementia cause most chronic illnesses and disability among the elderly. Eighty percent of the noninstitutionalized elderly have one or more chronic health problems (Freund and McGuire 1991; Wagner 1999). Caregiving for elderly often starts out gradually, with family members assisting elders in paying bills, maintaining their homes, shopping, visiting doctors, or other daily living tasks. In many cases, caregiving work expands and becomes more emotionally and physically exhausting as health declines. When the health status of an elderly person dramatically declines, family members usually rally in support by providing care for their loved one. However, there is a tendency for that support to wane over time and for one primary caregiver to be selected by default: usually based on being female, living nearby, and being unemployed (Aneshensel, Pearlin, and Schuler 1993). As few elderly people have young children, most caregiving work falls to those who are middle-aged or elderly. The quality of the relationship between caregiver and care receiver is an important factor in caregiver burden. Caregiving can solidify emotional bonds in close relationships; on the other hand, it may cause longstanding family disagreements to reemerge.

Much research has focused on caregiving for elderly people with dementia, a long-term, degenerative disease that can require extensive and exhaustive care work. Dementia is defined as "disorders involving impairments of memory, intelligence, judgment, and neuropsychology, which are sufficient to inhibit carrying out social activities or work" (Aneshensel et al. 1995, p. 7). Mild levels of dementia affect more than 60 percent of the elderly and, according to Aneshensel and her associates, 4 to 7 percent of the elderly in North America and Europe have moderate to severe levels of dementia. Alzheimer's disease is the most common type of dementia, and caring for its victims can be highly stressful and lead to family dysfunction. In the early stages, family caregivers may recognize that there is a health problem and respond by providing minimal types of assistance. Aneshensel, Pearlin, and Schuler (1993) found that the average caregiver for patients with Alzheimer's disease had been providing care for more than three years before a doctor was consulted. The tendency of individuals with Alzheimer's disease to deteriorate cognitively and physically causes unique caregiving problems. Studies have suggested that cognitive impairment increases strain because it creates an ambiguity in the family boundary: The patient's failure to recognize or emotionally respond to the caregiver creates confusion over whether the patient is in or out of the family system (Boss, Caron, and Horbal 1988). Whatever the strains, caregiving for elderly people is often time-bounded, as serious, degenerative disease among elderly people often leads to death or institutional care.

The notion of "family" caregiving obscures the fact that women do most of the caregiving work. Gender norms that prescribe nurturing and domestic roles for women naturally assign women the responsibility for caring for sick family members at home (Gerstel and Gallagher 1993). In some cultures male caregivers are denigrated: For example, a study of caregiving in South Asian communities found that men who took on the role of caregiver—especially those who quit their jobs to do so—were stigmatized and seen as unworthy of respect (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). There is also a gender division in the type of work that men and women perform and in their styles of caregiving. Men perform more instrumental tasks for relatives with disability or illness, such as lawn maintenance, lifting, and assisting with financial matters. They also have a more activity-oriented, managerial, and emotionally detached style of caregiving and, when they are the primary caregiver, they receive more help from others in carrying out their tasks (Boss, Caron, and Horbal 1988; Ungerson 1987). Women view caregiving as a duty and obligation and have styles that are more expressive and supportive. They provide more personal service than do men, receive less assistance from others in performing their work, but do have more sources of emotional support. The gendered nature of caregiving work means that the lives of women are more affected than those of men. Caregiving substantially increases the amount of work they perform in the family and may undermine opportunities for employment and other activities.

More recent studies have begun to examine an additional impact of gender on chronic illness: How the sex of the chronically ill or disabled person affects caregiving. For example, in countries where female modesty and chastity are strongly emphasized, caring for sexually mature women can be more difficult than caring for their male counterparts (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). Parents' caregiving for chronically ill children may also be shaped by gender norms and expectations. Being sick, dependent, or frail is seen as more of a violation of traditional gender norms for men than for women; as Kathy Charmaz (1995, p. 268) has noted, "illness can reduce a man's status in masculine hierarchies, shift his power relations with women, and raise his self-doubts about masculinity." Some research finds that parents see sick sons as more impaired by the illness and less capable of self-care, and that they devote more time and energy to providing care for them (Hill and Zimmerman 1995). Williams (2000) found that boys are more likely than girls to hide their chronic illness, which makes compliance with medical regimens difficult. One mother described her diabetic 15-year old son refusing to do insulin injections at school:

He won't do them [blood sugars] at school now, he absolutely refuses, he won't even do an injection at school. He's on three injections a day and the hospital would like him to go on to four but he won't do it in front of his friends, and he doesn't like the fact that he is diabetic in that respect, he wants to be normal. (Williams 2000, p. 261)

Studies of family caregiving have often focused on caring as burdensome and disruptive to families, especially women, and as a threat to family stability. However, researchers have begun to emphasize the subjective and experiential aspects of caregiving that arise from the meanings assigned to the work (Fisher and Tronto 1990; Traustadottir 1991). Although caregiver work needs to be recognized, it need not be seen as inherently burdensome or unworthy: Rather, caring can be empowering as it enhances the quality of life for chronically ill and/or disabled persons. This may be especially true when there is a close and reciprocal relationship between caregivers and those they care for. Kathleen Theide Call and her colleagues (1999) use a social exchange perspective to point out that dependent and chronically ill people who receive care often reciprocate in a number of ways, and feel uncomfortable when they cannot do so. They found that caregiving is less burdensome when the care receiver is deemed as worthy and the caregiver is a part of the immediate family. The majority of care receivers have not relinquished all their family roles, relationships, and life activities, but rather they continue to participate in and make vital contributions to their families and communities (Parker 1993). As one researcher points out, "People do not become less human, less interesting, or less deserving just because they have unresolvable or disabling conditions. Rather, they continue to learn, to adapt, and to live their lives as well as they can manage. In other words, they seek a state of health that represents their best effort within the specific challenges of the disease" (Thorne 1993, p. 2).

Stress, Social Support, and Coping

Although providing care for chronically ill and/or disabled family members is inherently stressful, several factors mediate the impact of that stress. Family structure, economic resources, social support, and coping resources and strategies all have an impact on the caregiving experience. Family structure may mediate the impact of caregiving for African Americans, who reportedly experience less stress and burden than other racial groups. One study explains this by noting that African Americans rely on a more diverse group of caregivers, including extended family members and close friends (Tripp-Reimer 1997). Economic resources can also influence caregiving work. Patricia G. Archbold (1983) found that affluent caregivers were care managers who used a variety of institutional resources to coordinate their parents' care, whereas low-income women were direct care providers who performed the heavy physical work of nursing care and personal service. Stress is also reduced by the availability of social support; in fact, social support may also ameliorate the physical symptoms of illness and enhance survival. Many types of social support have been examined, but the three most basic types are emotional support, which fosters feelings of comfort; cognitive support, which entails providing information, knowledge, and advice; and material support, the offer of goods and materials ( Jacobsen 1986). Most people expect informal support from their friends and family members, and find such support available and adequate. However, there is a tendency for informal sources of support to be available during acute stages of the illness, such as the diagnosis or terminal stage, but to wane when the illness continues over an extended period of time.

Formal sources of social support are available on a more consistent basis and provide the advantage of talking with experts or people experiencing similar problems. Hospitals, schools, and state and private institutions offer support groups for people with various chronic conditions. These groups provide education about the illness or disability and information about resources available in meeting the daily needs of families. A central theme in support groups is empowerment, which refers to providing chronically ill people and their caregivers with the maximum amount of control over their own lives. Sarah Rosenfield (1992) reported that community resources can enhance the subjective quality of life for persons with chronic illnesses. Evaluating services available for the chronically mentally ill, she found that programs that increase economic resources through vocational training and financial support also increase the status, sense of mastery, and life satisfaction of clients. Findings such as these have led to a growth in the organization of support groups which focus on building family strengths and providing counseling and referral services.

In addition to using social and community resources that enhance coping, chronically ill persons and their families engage in a number of coping activities that mitigate the impact of the illness. Coping has been defined as the things people do to avoid or minimize the stress that would otherwise result from problematic conditions of life (Pearlin and Aneshensel 1986), and coping involves both having resources and using various coping strategies. Coping resources are the psychological and material assets available to individuals and their families in responding to stressful situations. Coping strategies, on the other hand, are the actual behaviors or responses people use in dealing with stressful events. At the individual level, coping resources include one's education, income, self-esteem, sense of mastery, and psychological hardiness, all of which affect one's ability to deal effectively with life strains. Early studies identified integration and adaptability as key family resources (Hill 1954), and other studies have built on this theme. Integration refers to having strong ties of affection, pride in family tradition, and a history of sharing in activities. Adaptability means having flexible social roles, sharing responsibility for performing tasks, and communicating openly. Coping is enhanced when the family does not blame itself for the illness, feels confident in its ability to manage the situation, and continues to be sensitive and responsive to the needs of all family members. Communication and emotional expressiveness, role relationships, available caregivers, and financial resources are all important resources in managing illnesses.

A variety of coping strategies have been identified among persons who experience life strains, including prayer, stoicism, physical activity, denial, withdrawal, and ignoring the problem. The two most common strategies for coping with long-term chronic illness and its debilitating effects, however, are normalization and the attribution of meaning. After the initial impact of the diagnosis of chronic illness wanes, family members are eager to resume their normal lives. Whatever the level of physical or mental impairment caused by the illness, most people do not want the illness to threaten the self-identities, social roles, or activities that they value, or to become the dominant factor in their interactions with others. To avoid this, they attempt to normalize the situation by minimizing the illness and conveying the impression of normalcy to others. One normalizing strategy is to describe behaviors associated with the illness, such as pain, crying, fatigue, forgetfulness, diet changes, and drug therapies, as things that all people experience or engage in from time to time. Parents often make sure that their ill or disabled children participate in as many normal school and household activities as necessary. In some cases chronically ill people invest a great deal of energy in their efforts to manage the impressions and responses of others; they may disguise symptoms, avoid embarrassing situations, or control the information available to others.

The attribution of meaning, a coping strategy that refers to defining the illness in a positive manner, is also an effort to maintain a certain balance in family life. Parents and other family members often view the illness as increasing family cohesion, their patience, and their faith in God or as leading them to develop more meaningful goals and values. Parents may also redefine the expectations they have for their child with chronic illness or disability in a way conducive to maintaining a positive self-image. In a study focusing on preventing mental health problems among children with chronic illness, Joan M. Patterson and Gayle Geber (1991) point out that meanings are at the core of determining whether a disability leads to a handicap, which is a discrepancy between role expectations and actual role performance. The process of definition allows people with chronic illness and their families to endow the illness with meaning.

Although scientific medicine has made progress in treating and managing chronic illnesses, there is little hope that medical interventions will completely eradicate these illnesses. Moreover, the growing elderly population, the prevalence of chronic conditions, the proliferation of medical technologies, and the expectation of virtually unlimited access to medical care has placed severe strains on the health care systems of developed countries. As a result, health authorities are now emphasizing preventive care, healthy lifestyles (e.g., dietary changes, stress reduction, and exercise) as the key to preventing chronic illness, and patients are relying on a broader range healing options such as herbal therapies, acupuncture, and massages. Rather than continuing to focus on finding biophysical/technological cures for every disease, some argue that our attention should be directed toward improvements in primary care and a focus on caring rather than curing. Caring has been defined as "a positive emotional and supportive response . . . to affirm our commitment to their well-being, our willingness to identify with them in their pain and suffering, and our desire to do what we can to relieve their situation" (Callahan 1990, p. 111).

See also:Acquired Immunodeficiency Syndrome (AIDS); Alzheimer's Disease; Anxiety Disorders; Attention Deficit/Hyperactivity Disorder (ADHD);Caregiving; Death and Dying; Depression: Adults; Depression: Children and Adolescents; Dementia; Disabilities; Grief, Loss, and Bereavement; Health and Families; Homeless Families; Hospice; Industrialization; Learning Disorders; Poverty; Respite Care: Adult; Respite Care: Child; Schizophrenia; Stress; Substance Abuse; Substitute Caregivers

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shirley a. hill

Chronic Pain

Definition

Description

Incidence/Prevalence

Causes and symptoms

Symptoms

Demographics

Possible risk factors

Complications

Associated conditions

Diagnosis

Psychological measures

Treatments

Multidisciplinary approach

Medications

Psychological and social interventions

Cognitive-behavioral therapy

Behavior modification

Alternative therapies

Other management

Laughter

Prognosis

Prevention

Resources

Definition

Chronic pain disorder has no clear physical cause, or occurs with illnesses that do not explain the pain. It is described in the mental-health handbook, Diagnostic and Statistical Manual of Mental Disorders (DSM). The pain is severe enough to need treatment, lasts more than six months, and includes psychological factors. The National Institute of Neurological Disorders and Stroke states that chronic pain lasts longer than the average expected time for any given condition. Furthermore, acute pain alerts the nervous system to protect against injury, but chronic pain is useless because the injury is gone.

Description

Chronic pain is different for each individual. It can be continuous or it can come and go. It is described as burning, tingling, shooting, electrical, or an ache, with numbness. Other patients report stiffness, discomfort, soreness, and tightness.

Incidence/Prevalence

Up to 40% of the American population may experience chronic pain. There is inadequate data available about the rates of pain, because the definition has changed within the American Psychiatric Association (APA).

The Chronic Pain Network reports tens of millions of people with low-back pain and arthritis, many

with a five-year pain history and pain occurring six days a week. In 2003, 38 million Americans reported chronic back pain, 36 million had migraines, 19.3 million reported arthritis, 3.1 million had diabetic neuropathy, 1.4 million reported cancer pain, and 0.5 million reported HIV/AIDS-related pain.

American Pain Society (APS) president C. Richard Chapman, PhD, states that only 25% of the 23 million patients who have surgery every year get pain relief. There are 65 million injuries per year and millions more cases where disease causes pain. Over 40% of pain patients in the moderate-to-severe range cannot find relief and only 30% of cancer-pain patients are relieved.

Causes and symptoms

Causes

Multiple causes of many types can cause pain. The most common noncancer pain types are back and neck, fibromyalgia, headache, arthritis, and neurolog-ically based pain.

Symptoms

The symptoms of chronic pain disorder, as described by the APA, include at least one of the following:

• depression and anxiety
• negative or distorted thinking
• problems with social relationships
• disability or reduced ability to participate in usual daily activities
• increased pain that requires treatment
• insomnia and fatigue

Demographics

Women are twice as likely as men to have chronic pain and adults aged 40-50 are the most affected.

Possible risk factors

The risk factors recognized for chronic pain disorder by the APA include:

• one’s parents or siblings experiencing it
• depression or alcohol abuse occurring in one’s family
• being pain-prone and having a usual behavior pattern of self-sacrifice, self-defeating behavior, and abusive interactions
• demonstrating underlying severe depression
• being a hard-working, rigid, obsessive, or perfectionistic individual

Complications

Complications stemming from chronic pain disorder can include suicide , anger and depression, anxiety, and substance abuse and addiction and/or alcohol abuse. Substance and alcohol abuse can often be a self-medicating behavior used to mask the pain experience and to remove pain behaviors as well as feelings of anxiety, anger, and depression arising from the frustration of unrelieved pain. The patient may overuse prescription medications, use medications for off-label purposes, or seek illegal substances. This may be especially true if the patient lives among unsupportive or abusive others. Suicide may be an act of ending pain permanently or the accidental result of drug overdose or alcohol poisoning.

Associated conditions

These include secondary gain, substance use, dependent or histrionic personality disorder , major depression in 25–50% of cases, and dysthymia (milder depression) in 60–100% of chronic-pain cases.

Diagnosis

A psychiatrist first determines if the pain is medical. If so, then there is no pain disorder. If not, then the psychiatrist determines whether the pain is pretended. If this is the case, the diagnosis is either malingering for rewards such as narcotics, or a factitious disorder that rewards the patient for acting sick.

A pain disorder includes pain that occurs in at least one place in the body and needs treatment, as well as psychological factors, significant distress, and pain that is not better explained by mood, anxiety, or psychosis .

Psychological measures

The psychiatrist uses several methods to find the severity of pain and the role of psychological factors. These include standardized and informal interviews, pain-rating scales, and visual scales where the patient marks a place on a line to show the amount of pain, or chooses a picture of a facial expression to represent the degree of pain.

The simplest test for pain is to ask the patient how much pain they are feeling on a scale of 1 to 10. On this scale, 1 is the least amount of pain and 10 is the most or worst pain ever felt. Other tests used are the McGill Pain Questionnaire and the West Haven-Yale Multidimensional Pain Inventory.

Treatments

The goal of treatment is controlling and managing pain in order for the patient to be able to function in daily life. In 2007, the American Chronic Pain Association (ACPA) concluded that: “An essential concept in pain management is that each person is different and will respond differently to situations, interventions, and medications. It is important for the person with pain, family members, and others to avoid quick judgments based on what they hear or read about medications. The best place to get advice about medications is from the health care provider.”

Multidisciplinary approach

Patients should seek interested, well-qualified health care professionals and work with them to find solutions effective for their unique pain experiences. This may include physicians, medical specialists, nurse practitioners, alternative therapists, mental health professionals, physical therapists, chiropractors, massage therapists, a personal trainer; and a pastor, rabbi, or spiritual mentor.

Several methods of treatment can work together to manage chronic pain. This combined treatment can be different and require unique “doses,” according to individual needs. It is not one-size-fits-all, and medication alone is often not the total solution.

Patients should learn everything possible about their unique pain in order to understand it. Learning should be with the intent of accepting, targeting, and effectively treating the pain. Patients and families can investigate through public, university, and hospital libraries; Internet research databases; pain-related discussion boards; and online and in-person support groups of encouraging, like-minded people. In addition, it is vital to stay up-to-date concerning the progress of Decade of Pain Control and Research, which was declared January 1, 2001 by the U.S. Congress.

Medications

Medication schedules can be tricky, but they are important. The ACPA promotes the use of a long-term daily pain reliever supplemented by a short-term fast-acting drug for flare-ups.

Depression often occurs with pain. In using opioids (narcotics), potential pain relief must be considered in the light of the side effects of nausea and constipation. Long-term narcotic use presents the risk of drug dependency. Pain-modifying drugs like amitriptyline affect the brain with doses lower than those given for depression. This resulting untreated depression can then result in increased pain. Other antidepressants may also be prescribed. Further, anticonvulsant drugs can be used off-label in pain trigger point injections. This involves the injection of a cocktail of steroid and anesthetic combinations at the body’s affected pressure points to relieve painfully contracted tissues.

Psychological and social interventions

Chronic pain treatment may require individual or group psychotherapy ; family, behavioral, physical, or occupational therapy; or biofeedback . Treatment for insomnia may require relaxation training and education about good sleep habits.

Cognitive-behavioral therapy

Cognitive-behavioral therapy (CBT) educates patients about the pain-and-tension cycle, teaching them how to manage pain and distress, and about the effects of their medications. It helps patients to change their thinking about pain. Patients are taught to identify and modify negative or distorted thought patterns, such as the helplessness and hopelessness of depression. Within CBT, progressive muscle relaxation, deep breathing, visual imagery, hypnosis, and biofeedback are all useful treatments. Pain diaries are useful for charting patterns of pain so patients can identify what affects it, and help determine how well medication are working.

Behavior modification

Behavior modification is taught to the patients and families so that usual activity and non-pain behaviors are encouraged and the pain behaviors of passiveness, inactivity, and medication dependency are removed.

Alternative therapies

Other treatments include acupuncture , electrical stimulation acupuncture, transcutaneous electrical nerve stimulation, massage, nerve blocks, surgery, meditation , exercise, yoga , music, poetry, and art therapy.

Other management

Organization

The Asian concept of feng shui says that unhealthy layouts of homes and workspaces causes stress . If spaces are difficult to maneuver or are cluttered and dim, then pain may increase and last longer. Spaces are best arranged for openness and convenience. Pain patients can also eliminate unnecessary tasks, break big jobs into smaller steps, take breaks, use schedules, and enlist help to reduce stress and pain.

KEY TERMS

Ankylosing spondylitis —A spinal arthritis that begins in the low back and can spread upwards to the skull.

Feng shui —The Chinese method of arranging of objects to increase positive energy flow.

Secondary gain —The advantage gained by having symptoms.

Yoga —A form of stretching and breathing mediation.

Laughter

That laughter is good medicine was demonstrated by journalist and medical professor Norman Cousins as he used planned bouts of laughter to treat himself, with his doctor’s collaboration, for the debilitating pain of ankylosing spondylitis.

Prognosis

The prognosis for total relief of pain symptoms is not good in cases of chronic pain disorder. The usual pattern includes flare-ups between periods of moderate or less-severe pain. The prognosis is best if a patient can keep working. Unemployment leads to isolation, inactivity, and negative thinking, which results in more pain. If there is reinforcement of pain behavior by disability payments, gaining attention, or abuse of addictive drugs, relief of chromic pain is less likely. Recent studies show that cognitive-behavioral therapy along with antidepressants is the most effective treatment.

Prevention

Pain disorder may be prevented by early intervention at the beginning of pain. When pain becomes chronic, it is important to find help with using strategies to manage the pain before inactivity, immobility, and depression appear. Most pain patients see their own doctor first, and the doctor may refer them to a psychiatrist or pain clinic. This does not mean that the doctor does not believe the pain is real. It means that he or she needs to work with other professionals in order to relieve the pain.

Resources

PERIODICALS

Flor, H., and C. Hermann. “Neuropsychotherapy for Chronic Pain. Changing Pain Memories by Behavioral Interventions.” Verhaltenstherapie 16.2 (2006): 86–94.

Gallagher, Rollin M., Maripat Welz-Bosna, and Arnold Gammaitoni. “Assessment of Dosing Frequency of Sustained-release Opioid Preparations in Patients with Chronic Nonmalignant Pain.” Pain Medicine 8.1 (2007): 71–74.

“Hospitals Get Better at Pain Management, Often Led by Clinical Nurse Specialists.” Hospitals and Health Networks 80.11 (2006): 94.

McWilliams, A. Lachlan, R. Goodwin, and B. Cox. “Depression and Anxiety Associated with Three Pain Conditions: Results from a Nationally Representative Sample.” The Journal of the International Association for the Study of Pain 111 (2004): 77–83.

Monina, E., G. Falzetti, V. Firetto, L. Mariani, and C. A. Caputi. “Behavioural Evaluation in Patients Affected by Chronic Pain: A Preliminary Study.”The Journal of Headache and Pain 7.6 (2006): 395–402.

Naughton, Felix, Polly Ashworth, and Suzanne M. Ske-vington. “Does Sleep Quality Predict Pain-related Disability in Chronic Pain Patients?” PAIN. The Journal of the International Association for the Study of Pain 127.3 (2007): 243–52.

Osborne, Travis L., and others. “Psychosocial Factors Associated with Pain intensity, Pain-related Interference, and Psychological Functioning in Persons with Multiple Sclerosis and Pain.” PAIN. The Journal of the International Association for the Study of Pain 7.102 (2007): 52–62.

Phillips, Donald M. “JCAHO Pain Management Standards Are Unveiled.” Journal of the American Medical Association 284.4 (2000): 428–9

Smith, Blair H., Gary J. Macfarlane, and Nicola Torrance. “Epidemiology of Chronic Pain, from the Laboratory to the Bus Stop: Time to Add Understanding of Biological Mechanisms to the Study of Risk Factors in Population-based Research?”PAIN. The Journal of the International Association for the Study of Pain 127, 1–2 (2007): 5–10.

ORGANIZATIONS

American Chronic Pain Association. P.O. Box 850, Rocklin, CA 95677-0850. Telephone: (800) 533-3231.

American Pain Society. 4700 W. Lake Avenue, Glenview, IL 60025-1485. Telephone: (847) 375-4715. <http://www.ampainsoc.org>.

American Psychiatric Association. 1000 Wilson Boulevard, Suite 1825, Arlington, VA. 22209-3901. Telephone: (703) 907-7300 <http://www.psych.org>.

Chronic Pain Network.<http://www.chronicpainnetwork.com>.

National Institute of Neurological Disorders and Stroke. P.O. Box 5801, Bethesda, MD 20824. Telephone: (800) 352-9424. <http://www.ninds.nih.gov>.

UCLA History of Pain Project, The John C. Liebeskind History of Pain Collection.<http://www.library.ucla.edu/libraries/biomed/his/pain.html>.

OTHER

Masuda, A., M. Hattenmaru, and C. Tei. “Repeated Thermal Therapy Improves Outcomes in Patients with Chronic Pain.” International Congress Series. 18th World Congress. Kobe, Japan. (2005).

National Institutes of Health. Statement by National Institutes of Health, U.S. Department of Health and Human Services, on An Update of NIH Pain Research and Related Program Initiatives, before Statement for the Record, Subcommittee on Health, Committee on Energy and Commerce, U.S. House of Representatives. (Dec. 8, 2005).

Patty Inglish, MS

Chronic Kidney Failure

Definition

Chronic kidney failure occurs when disease or disorder damages the kidneys so that they are no longer capable of adequately removing fluids and wastes from the body or of maintaining the proper level of certain kidney-regulated chemicals in the bloodstream.

Description

Chronic kidney failure, also known as chronic renal failure, affects over 250,000 Americans annually. It is caused by a number of diseases and inherited disorders, but the progression of chronic kidney failure is always the same. The kidneys, which serve as the body's natural filtration system, gradually lose their ability to remove fluids and waste products (urea) from the bloodstream. They also fail to regulate certain chemicals in the bloodstream, and deposit protein into the urine. Chronic kidney failure is irreversible, and will eventually lead to total kidney failure, also known as end-stage renal disease (ESRD). Without proper treatment intervention to remove wastes and fluids from the bloodstream, ESRD is fatal.

Causes and symptoms

Kidney failure is triggered by disease or a hereditary disorder in the kidneys. Both kidneys are typically affected. The four most common causes of chronic kidney failure include:

• Diabetes. Diabetes mellitus (DM), both insulin dependant (IDDM) and non-insulin dependant (NIDDM), occurs when the body cannot produce and/or use insulin, the hormone necessary for the body to process glucose. Long-term diabetes may cause the glomeruli, the filtering units located in the nephrons of the kidneys, to gradually lose functioning.
• Glomerulonephritis. Glomerulonephritis is a chronic inflammation of the glomeruli, or filtering units of the kidney. Certain types of glomerulonephritis are treatable, and may only cause a temporary disruption of kidney functioning.
• Hypertension. High blood pressure is unique in that it is both a cause and a major symptom of kidney failure. The kidneys can become stressed and ultimately sustain permanent damage from blood pushing through them at an excessive level of pressure over a long period of time.
• Polycystic kidney disease. Polycystic kidney disease is an inherited disorder that causes cysts to be formed on the nephrons, or functioning units, of the kidneys. The cysts hamper the regular functioning of the kidney.

Other possible causes of chronic kidney failure include kidney cancer, obstructions such as kidney stones, pyelonephritis, reflux nephropathy, systemic lupus erythematosus, amyloidosis, sickle cell anemia, Alport syndrome, and oxalosis.

Initially, symptoms of chronic kidney failure develop slowly. Even individuals with mild to moderate kidney failure may show few symtpoms in spite of increased urea in their blood. Among the symptoms that may be present at this point are frequent urination during the night and high blood pressure.

Most symptoms of chronic kidney failure are not apparent until kidney disease has progressed significantly. Common symptoms include:

• Anemia. The kidneys are responsible for the production of erythropoietin (EPO), a hormone which stimulates red cell production. If kidney disease causes shrinking of the kidney, this red blood cell production is hampered.
• Bad breath or a bad taste in mouth. Urea, or waste products, in the saliva may cause an ammonia-like taste in the mouth.
• Bone and joint problems. The kidneys produce vitamin D, which aids in the absorption of calcium and keeps bones strong. For patients with kidney failure, bones may become brittle, and in the case of children, normal growth may be stunted. Joint pain may also occur as a result of unchecked phosphate levels in the blood.
• Edema. Puffiness or swelling around the eyes, arms, hands, and feet.
• Frequent urination.
• Foamy or bloody urine. Protein in the urine may cause it to foam significantly. Blood in the urine may indicate bleeding from diseased or obstructed kidneys, bladder, or ureters.
• Headaches. High blood pressure may trigger headaches.
• Hypertension, or high blood pressure. The retention of fluids and wastes causes blood volume to increase, which in turn, causes blood pressure to rise.
• Increased fatigue. Toxic substances in the blood and the presence of anemia may cause feelings of exhaustion.
• Itching. Phosphorus, which is typically eliminated in the urine, accumulates in the blood of patients with kidney failure. This heightened phosphorus level may cause itching of the skin.
• Lower back pain. Pain where the kidneys are located, in the small of the back below the ribs.
• Nausea, loss of appetite, and vomiting. Urea in the gastric juices may cause upset stomach. This can lead to malnutrition and weight loss.

Diagnosis

Kidney failure is typically diagnosed and treated by a nephrologist, a doctor that specializes in treating the kidneys. The patient that is suspected of having chronic kidney failure will undergo an extensive blood work-up. A blood test will assess the levels of creatinine, blood urea nitrogen (BUN), uric acid, phosphate, sodium, and potassium in the blood. Urine samples will also be collected, usually over a 24-hour period, to assess protein loss.

Uncovering the cause of kidney failure is critical to proper treatment. A full assessment of the kidneys is necessary to determine if the underlying disease is treatable and if the kidney failure is chronic or acute. An x ray, MRI, computed tomography scan, ultrasound, renal biopsy, and/or arteriogram of the kidneys may be employed to determine the cause of kidney failure and level of remaining kidney function. X rays and ultrasound of the bladder and/or ureters may also be taken.

Treatment

Chronic kidney failure is an irreversible condition. Hemodialysis, peritoneal dialysis, or kidney transplantation must be employed to replace the lost function of the kidneys. In addition, dietary changes and treatment to relieve specific symptoms such as anemia and high blood pressure are critical to the treatment process.

Hemodialysis

Hemodialysis is the most frequently prescribed type of dialysis treatment in the United States. Most hemodialysis patients require treatment three times a week, for an average of three to four hours per dialysis "run" depending on the type of dialyzer used and their current physical condition. The treatment involves circulating the patient's blood outside of the body through an extracorporeal circuit (ECC), or dialysis circuit. The dialysis circuit consists of plastic blood tubing, a two-compartment filter known as a dialyzer, or artificial kidney, and a dialysis machine that monitors and maintains blood flow and administers dialysate, a chemical bath used to draw waste products out of the blood. The patient's blood leaves and enters the body through two needles inserted into the patient's vein, called an access site, and is pushed through the blood compartment of the dialyzer. Once inside of the dialyzer, excess fluids and toxins are pulled out of the bloodstream and into the dialysate compartment, where they are carried out of the body. At the same time, electrolytes and other chemicals in the dialysate solution move from the dialysate into the bloodstream. The purified, chemically-balanced blood is then returned to the body.

Peritoneal dialysis

In peritoneal dialysis (PD), the patient's peritoneum, or lining of the abdomen, acts as a blood filter. A catheter is surgically inserted into the patient's abdomen. During treatment, the catheter is used to fill the abdominal cavity with dialysate. Waste products and excess fluids move from the patient's blood-stream into the dialysate solution. After a waiting period of six to 24 hours, depending on the treatment method used, the waste-filled dialysate is drained from the abdomen, and replaced with clean dialysate. There are three types of peritoneal dialysis, which vary by treatment time and administration method: Continuous Ambulatory Peritoneal Dialysis (CAPD), Continuous Cyclic Peritoneal Dialysis (CCPD), and Intermittent Peritoneal Dialysis (IPD).

Kidney transplantation

Kidney transplantation involves surgically attaching a functioning kidney, or graft, from a brain dead organ donor (a cadaver transplant), or from a living donor, to a patient with ESRD. Patients with chronic renal disease who need a transplant and don't have a living donor register with UNOS (United Network for Organ Sharing), the federal organ procurement agency, to be placed on a waiting list for a cadaver kidney transplant. Kidney availability is based on the patient's health status. When the new kidney is transplanted, the patient's existing, diseased kidneys may or may not be removed, depending on the circumstances surrounding the kidney failure. A regimen of immunosuppressive, or anti-rejection medication, is required after transplantation surgery.

Dietary management

A diet low in sodium, potassium, and phosphorous, three substances that the kidneys regulate, is critical in managing kidney disease. Other dietary restrictions, such as a reduction in protein, may be prescribed depending on the cause of kidney failure and the type of dialysis treatment employed. Patients with chronic kidney failure also need to limit their fluid intake.

Medications and dietary supplements

Kidney failure patients with hypertension typically take medication to control their high blood pressure. Epoetin alfa, or EPO (Epogen), a hormone therapy, and intravenous or oral iron supplements are used to manage anemia. A multivitamin may be prescribed to replace vitamins lost during dialysis treatments. Vitamin D, which promotes the absorption of calcium, along with calcium supplements, may also be prescribed.

Since 1973, Medicare has picked up 80% of ESRD treatment costs, including the costs of dialysis and transplantation and of some medications. To qualify for benefits, a patient must be insured or eligible for benefits under Social Security, or be a spouse or child of an eligible American. Private insurance and state Medicaid programs often cover the remaining 20% of treatment costs.

KEY TERMS

End-stage renal disease (ESRD)— Total kidney failure; chronic kidney failure is diagnosed as ESRD when kidney function falls to 5-10% of capacity.

Nephrotic syndrome— Characterized by protein loss in the urine, low protein levels in the blood, and fluid retention.

Ureters— The two ducts that pass urine from each kidney to the bladder.

Prognosis

Early diagnosis and treatment of kidney failure is critical to improving length and quality of life in chronic kidney failure patients. Patient outcome varies by the cause of chronic kidney failure and the method chosen to treat it. Overall, patients with chronic kidney disease leading to ESRD have a shortened lifespan. According to the United States Renal Data System (USRDS), the lifespan of an ESRD patient is 18-47% of the lifespan of the age-sex-race matched general population. ESRD patients on dialysis have a lifespan that is 16-37% of the general population.

The demand for kidneys to transplant continues to exceed supply. In 1996, over 34,000 Americans were on the UNOS waiting list for a kidney transplant, but only 11,330 living donor and cadaver transplants were actually performed. Cadaver kidney transplants have a 50% chance of functioning nine years, and living donor kidneys that have two matching antigen pairs have a 50% chance of functioning for 24 years. However, some transplant grafts have functioned for over 30 years.

Resources

ORGANIZATIONS

American Association of Kidney Patients. 100 S. Ashley Drive, #280, Tampa, FL 33602. (800) 749-2257. 〈http://www.aakp.org〉.

American Kidney Fund (AKF). Suite 1010, 6110 Executive Boulevard, Rockville, MD 20852. (800) 638-8299. 〈http://www.arbon.com/kidney〉.

National Kidney Foundation. 30 East 33rd St., New York, NY 10016. (800) 622-9010. 〈http://www.kidney.org〉.

United States Renal Data System (USRDS). The University of Michigan, 315 W. Huron, Suite 240, Ann Arbor, MI 48103. (734) 998-6611. 〈http://www.med.umich.edu/usrds〉.

Chronic kidney failure

Definition

Chronic kidney failure occurs when disease or disorder damages the kidneys so that they are no longer capable of adequately removing fluids and wastes from the body or of maintaining the proper level of certain kidney-regulated chemicals in the bloodstream.

Description

Chronic kidney failure, also known as chronic renal failure, affects approximately 26 million Americans annually with over 20 million at increased risk of developing the disease. It is caused by a number of diseases and inherited disorders, but the progression of chronic kidney failure is always the same. The kidneys, which serve as the body's natural filtration system, gradually lose their ability to remove fluids and waste products (urea) from the bloodstream. They also fail to regulate certain chemicals in the bloodstream, and deposit protein into the urine. Chronic kidney failure is irreversible, and will eventually lead to total kidney failure, also known as end-stage renal disease (ESRD). Without proper treatment intervention to remove wastes and fluids from the bloodstream, ESRD is fatal.

Causes and symptoms

Kidney failure is triggered by disease or a hereditary disorder in the kidneys. Both kidneys are typically affected. The two most common causes of chronic kidney failure include:

• Diabetes. This condition occurs when the body does not produce and/or use insulin, the hormone necessary to convert starches, sugar, and other food into energy. The two forms of diabetes are categorized as Type 1 or Type 2. Type 1 diabetes occurs when the body fails to produce insulin. This in turn results in the body's inability to process glucose. Approximately 5–10% of Americans have type 1 diabetes. Type 2 diabetes involves a combination of insulin resistance, whereby the body fails to use insulin appropriately, and insulin deficiency. The majority of Americans diagnosed with diabetes have type 2 diabetes.
• Hypertension. High blood pressure is unique in that it is both a cause and a major symptom of kidney failure. The kidneys can become stressed and ultimately sustain permanent damage from blood pushing through them at an excessive level of pressure over a long period of time.

Other possible causes of chronic kidney failure include:

• Amyloidosis. A rare, and in some instances fatal disease that occurs when amyloid proteins build up in the organs. Amyloidosis can affect the heart, kidneys, spleen, liver, gastrointestinal tract, and nervous system.
• Glomerulonephritis. Glomerulonephritis is a chronic inflammation of the glomeruli, or filtering units of the kidney. Certain types of glomerulonephritis are treatable, and may only cause a temporary disruption of kidney functioning.
• Kidney artery stenosis. This condition occurs when the kidney artery becomes blocked. In older adults, artery blockage is usually caused by fatty deposit build up, a condition called atherosclerosis.
• Kidney cancer.
• Obstructive nephropathy. This condition occurs when the outflow of urine is obstructed by an enlarged prostate, kidney stones or tumors, or by a condition called vesicoureteral reflux; when urine from the bladder flows into the kidneys. The pressure in the kidneys results in diminished function.
• Polycystic kidney disease. Polycystic kidney disease is an inherited disorder that causes cysts to be formed on the nephrons, or functioning units, of the kidneys. The cysts hamper the regular functioning of the kidney.
• Sickle cell anemia.
• Systemic lupus erythematosus. A chronic inflammatory disease that affects many parts of the body, particularly the kidneys.

Initially, symptoms of chronic kidney failure develop slowly. Even individuals with mild to moderate kidney failure may show few symtpoms in spite of increased urea in their blood. Among the symptoms that may be present at this point are frequent urination during the night and high blood pressure .

Most symptoms of chronic kidney failure are not apparent until kidney disease has progressed significantly. Common symptoms include:

• Anemia. The kidneys are responsible for the production of erythropoietin (EPO), a hormone which stimulates red cell production. If kidney disease causes shrinking of the kidney, this red blood cell production is hampered.
• Bad breath or a bad taste in mouth. Urea, or waste products, in the saliva may cause an ammonia-like taste in the mouth.
• Bone and joint problems. The kidneys produce vitamin D, which aids in the absorption of calcium and keeps bones strong. For patients with kidney failure, bones may become brittle, and in the case of children, normal growth may be stunted. Joint pain may also occur as a result of unchecked phosphate levels in the blood.
• Edema. Puffiness or swelling around the eyes, arms, hands, and feet.
• Frequent urination.
• Foamy or bloody urine. Protein in the urine may cause it to foam significantly. Blood in the urine may indicate bleeding from diseased or obstructed kidneys, bladder, or ureters.
• Headaches. High blood pressure may trigger headaches.
• Hypertension, or high blood pressure. The retention of fluids and wastes causes blood volume to increase, which in turn, causes blood pressure to rise.
• Increased fatigue. Toxic substances in the blood and the presence of anemia may cause feelings of exhaustion.
• Itching. Phosphorus, which is typically eliminated in the urine, accumulates in the blood of patients with kidney failure. This heightened phosphorus level may cause itching of the skin.
• Lower back pain. Pain where the kidneys are located, in the small of the back below the ribs.
• Nausea, loss of appetite, and vomiting. Urea in the gastric juices may cause upset stomach. This can lead to malnutrition and weight loss.

Diagnosis

Kidney failure is typically diagnosed and treated by a nephrologist, a doctor that specializes in treating the kidneys. The patient that is suspected of having chronic kidney failure will undergo an extensive blood work-up. A blood test will assess the levels of creatinine, blood urea nitrogen (BUN), uric acid, phosphate, sodium , and potassium in the blood. Urine samples will also be collected, usually over a 24-hour period, to assess protein loss.

Uncovering the cause of kidney failure is critical to proper treatment. A full assessment of the kidneys is necessary to determine if the underlying disease is treatable and if the kidney failure is chronic or acute. An x ray, MRI, computed tomography scan, ultrasound, renal biopsy, and/or arteriogram of the kidneys may be employed to determine the cause of kidney failure and level of remaining kidney function. X rays and ultrasound of the bladder and/or ureters may also be taken.

Treatment

Chronic kidney failure is an irreversible condition. The principal aim of treatment is to arrest or at a minimum delay the progression of the disease. This is accomplished through treatments such as hemodialysis, peritoneal dialysis, or kidney transplantation , all of which replace the lost function of the kidneys. In addition, dietary changes and treatment to relieve specific symptoms such as anemia and high blood pressure are critical to the treatment process.

Hemodialysis

Hemodialysis is the most frequently prescribed type of dialysis treatment in the United States. Most hemodialysis patients require treatment three times a week, for an average of three to four hours per dialysis “run” depending on the type of dialyzer used and their current physical condition. The treatment involves circulating the patient's blood outside of the body through an extracorporeal circuit (ECC), or dialysis circuit. The dialysis circuit consists of plastic blood tubing, a two-compartment filter known as a dialyzer, or artificial kidney, and a dialysis machine that monitors and maintains blood flow and administers dialysate, a chemical bath used to draw waste products out of the blood. The patient's blood leaves and enters the body through two needles inserted into the patient's vein, called an access site, and is pushed through the blood compartment of the dialyzer. Once inside of the dialyzer, excess fluids and toxins are pulled out of the bloodstream and into the dialysate compartment, where they are carried out of the body. At the same time, electrolytes and other chemicals in the dialysate solution move from the dialysate into the bloodstream. The purified, chemically-balanced blood is then returned to the body.

Peritoneal dialysis

In peritoneal dialysis (PD), the patient's peritoneum, or lining of the abdomen, acts as a blood filter. A catheter is surgically inserted into the patient's abdomen. During treatment, the catheter is used to fill the abdominal cavity with dialysate. Waste products and excess fluids move from the patient's bloodstream into the dialysate solution. After a waiting period of six to 24 hours, depending on the treatment method used, the waste-filled dialysate is drained from the abdomen, and replaced with clean dialysate. There are three types of peritoneal dialysis, which vary by treatment time and administration method: Continuous Ambulatory Peritoneal Dialysis (CAPD), Continuous Cyclic Peritoneal Dialysis (CCPD), and Intermittent Peritoneal Dialysis (IPD).

Kidney transplantation

Kidney transplantation involves surgically attaching a functioning kidney, or graft, from a brain dead organ donor (a cadaver transplant), or from a living donor, to a patient with ESRD. Patients with chronic renal disease who need a transplant and don't have a living donor register with UNOS (United Network for Organ Sharing), the federal organ procurement agency, to be placed on a waiting list for a cadaver kidney transplant. Kidney availability is based on the patient's health status. When the new kidney is transplanted, the patient's existing, diseased kidneys may or may not be removed, depending on the circumstances surrounding the kidney failure. A regimen of immunosuppressive, or anti-rejection medication, is required after transplantation surgery.

Medications and dietary supplements

Kidney failure patients with hypertension typically take medication to control their high blood pressure. Epoetin alfa, or EPO (Epogen), a hormone therapy, and intravenous or oral iron supplements are used to manage anemia. A multivitamin may be prescribed to replace vitamins lost during dialysis treatments. Vitamin D , which promotes the absorption of calcium , along with calcium supplements , may also be prescribed.

Since 1973, Medicare has picked up 80% of ESRD treatment costs, including the costs of dialysis and transplantation and of some medications. To qualify for benefits, a patient must be insured or eligible for benefits under Social Security, or be a spouse or child of an eligible American. Private insurance and state Medicaid programs often cover the remaining 20% of treatment costs.

Nutrition/Dietetic concerns

A diet low in sodium, potassium, and phosphorous, three substances that the kidneys regulate, is critical in managing kidney disease. Other dietary restrictions, such as a reduction in protein, may be prescribed depending on the cause of kidney failure and the type of dialysis treatment employed. Patients with chronic kidney failure also need to limit their fluid intake.

Prognosis

Early diagnosis and treatment of kidney failure is critical to improving length and quality of life in chronic kidney failure patients. Patient outcome varies by the cause of chronic kidney failure and the method chosen to treat it. Overall, patients with chronic kidney disease leading to ESRD have a shortened lifespan. According to the United States Renal Data System (USRDS), the lifespan of an ESRD patient is 18–47% of the lifespan of the age-sex-race matched general population. ESRD patients on dialysis have a lifespan that is 16–37% of the general population.

The demand for kidneys to transplant continues to exceed supply. In 2007, approximately 28,000 kidney transplants were performed in the United States. This is a modest number considering that more than 98,000 patients were on the UNOS waiting list as of the first quarter of 2008.

KEY TERMS

End-stage renal disease (ESRD) —Total kidney failure; chronic kidney failure is diagnosed as ESRD when kidney function falls to 5-10% of capacity.

Nephrotic syndrome —Characterized by protein loss in the urine, low protein levels in the blood, and fluid retention.

Ureters —The two ducts that pass urine from each kidney to the bladder.

Combined medical advances in organ preservation, surgical procedure, and the development of more effective drugs to inhibit rejection have improved the success rates of all types of organ and tissue transplants. Studies conducted in 2007 indicate that transplantation from a living donor had a 95% survival rate after one year as compared to a 90% survival rate for deceased donor transplants. In addition, according to the Organ Procurement and Transplantation Network, patients who received living-donor transplants demonstrate an 80% survival rate after five years and those who received a deceased donor transplant have a 70% survival rate.

Resources

PERIODICALS

Wu, Christine MD, and Ron Shapiro MD, Henkie Tan MD, PhD, Amit Basu MD, Cynthia Smetanka MD, Claire Morgan MD, Nirav Shah MD, Jerry McCauley MD, MPH, Mark Unruh MD, MSc. “Kidney Transplantation in Elderly People: The Influence of Recipient Comorbidity and Living Kidney Donors.” Journal of the American Geriatrics Society 56, no. 2 (2008): 231–238.

ORGANIZATIONS

American Association of Kidney Patients, 100 S. Ashley Drive, #280, Tampa, FL, 33602, (800) 749-2257, http://www.aakp.org.

American Diabetes Association, 1701 North Beauregard St., Alexandria, VA, 22311, (800) 342-2383, http://www.diabetes.org.

American Kidney Fund (AKF), Ste. 1010, 6110 Executive Blvd., Rockville, MD, 20852, (800) 638-8299, http://www.arbon.com/kidney.

National Kidney Foundation, 30 East 33rd St., New York, NY, 10016, (800) 622-9010, http://www.kidney.org.

United Network for Organ Sharing, 700 North 4th St., Richmond, VA, 23219, (888) 894-6361, http://www.unos.org.

United States Renal Data System (USRDS), TheUniversity of Michigan, 315 W. Huron, Ste. 240, Ann Arbor, MI, 48103, (734) 998-6611, http://www.med.umich.edu/usrds.

Lisa M. Piazza M.A.

Chronic Kidney Failure

Definition

Chronic kidney failure occurs when disease or disorder damages the kidneys so that they can no longer adequately remove fluids and wastes from the body or maintain proper levels of kidney-regulated chemicals in the bloodstream.

Description

Chronic kidney failure, also known as chronic renal failure, affects over 250,000 Americans annually. It may be caused by a number of diseases and inherited disorders, but the progression (end result) of chronic kidney failure is always the same. The kidneys, which serve as the body's natural filtration system, gradually lose their ability to remove fluids and waste products (urea) from the bloodstream. They also fail to regulate certain chemicals in the bloodstream and allow protein to leak into the urine. Chronic kidney failure is irreversible and eventually leads to total kidney failure, known as end-stage renal disease (ESRD). Without treatment and intervention to remove wastes and fluids from the bloodstream, ESRD is inevitably fatal.

Causes and symptoms

Kidney failure is caused by acquired disease or hereditary disorders in the kidneys. The four most common causes of chronic kidney failure include:

• Diabetes. Diabetes mellitus (DM), both insulin dependant (IDDM) and non-insulin dependant (NIDDM), occurs when the body cannot produce and/or use insulin, the hormone necessary for the body to process glucose. Long-term diabetes may cause the glomeruli, the filtering units located in the nephrons of the kidneys, to gradually lose function.
• Hypertension. High blood pressure is both a cause and a result of kidney failure. The kidneys can become stressed and ultimately sustain permanent damage from blood pushing through them at excessive pressures over long periods of time.
• Glomerulonephritis. Glomerulonephritis is an inflammation of the glomeruli, or filtering units of the kidney. Certain types of glomerulonephritis are treatable, and may only cause a temporary disruption of kidney functioning.
• Polycystic kidney disease. Polycystic kidney disease is an inherited disorder that causes cysts to form in the kidneys. These cysts impair the regular functioning of the kidney.

Less common causes of chronic kidney failure include kidney cancer, obstructions such as kidney stones, pyelonephritis, reflux nephropathy, systemic lupus erythematosus, amyloidosis, sickle cell anemia, Alport syndrome, and oxalosis.

Initially, symptoms of chronic kidney failure develop slowly. Even individuals with mild to moderate kidney failure may have few symptoms in spite of increased urea in their blood. Among signs and symptoms that may be present at this point are frequent urination during the night and high blood pressure.

Most symptoms of chronic kidney failure are not apparent until kidney disease has progressed significantly. Common symptoms include:

• Anemia. The kidneys are responsible for the production of erythropoietin (EPO), a hormone that stimulates red cell production. If kidney disease causes shrinking of the kidney, this red cell production is hampered.
• Bad breath or a bad taste in mouth. Urea in the saliva may cause an ammonia-like taste in the mouth.
• Bone and joint problems. The kidneys produce vitamin D, which aids in the absorption of calcium and keeps bones strong. In patients with kidney failure, bones may become brittle, and in children, normal growth may be stunted. Joint pain may also occur as a result of unchecked phosphate levels in the blood.
• Edema. Puffiness or swelling around the eyes and legs.
• Frequent urination.
• Foamy or bloody urine. Protein in the urine may cause it to foam significantly. Blood in the urine may indicate bleeding from diseased or obstructed kidneys, bladder, or ureters.
• Headaches. High blood pressure may trigger headaches.
• Hypertension, or high blood pressure. The retention of fluids and sodium causes blood volume to increase, which in turn causes blood pressure to rise.
• Increased fatigue. Toxic substances in the blood and the presence of anemia may cause feelings of exhaustion.
• Itching. Phosphorus, which is typically eliminated in the urine, accumulates in the blood of patients with kidney failure. This heightened phosphorus level may cause itching of the skin.
• Low back pain. Pain where the kidneys are located, in the small of the back below the ribs.
• Nausea, loss of appetite, and vomiting. Urea in the gastric juices may cause upset stomach. This can lead to malnutrition and weight loss.

Diagnosis

Kidney failure is typically diagnosed and treated by a nephrologist, a physician specializing in kidney disease. The patient suspected of having chronic kidney failure will undergo an extensive blood work-up, usually performed by a laboratory technologist or technician. Blood tests will assess the levels of creatinine, blood urea nitrogen (BUN), uric acid, phosphate, sodium, and potassium in the blood. Urine samples will also be collected, usually over a 24-hour period, to assess protein loss.

Uncovering the cause of kidney failure is critical to proper treatment. A full assessment of the kidneys is necessary to determine if the underlying disease is treatable and if the kidney failure is chronic or acute. X ray, MRI, computed tomography scan, ultrasound, renal biopsy, and/or arteriogram of the kidneys may be employed to determine the cause of kidney failure and level of remaining kidney function. X rays and ultrasound of the bladder and/or ureters may also be taken. Most imaging studies are performed by radiology technicians.

Treatment

Chronic kidney failure is an irreversible condition. Hemodialysis, peritoneal dialysis, or kidney transplantation must be employed to replace the lost function of the kidneys if the failure progresses to ESRD. In addition, dietary changes and treatment to relieve specific symptoms such as anemia and high blood pressure are critical to the treatment process.

Hemodialysis

Hemodialysis is the most frequently prescribed type of dialysis treatment in the United States. Most hemodialysis patients require treatment three times a week, for an average of three to four hours per dialysis "run" depending on the type of dialyzer used and their current physical condition. The treatment involves circulating the patient's blood outside of the body through an extracorporeal circuit (ECC), or dialysis circuit. The dialysis circuit consists of plastic blood tubing, a two-compartment filter known as a dialyzer, or artificial kidney, and a dialysis machine that monitors and maintains blood flow and administers dialysate, a chemical bath used to draw waste products out of the blood. The patient's blood leaves and enters the body through two needles inserted into the patient's vein, called an access site, and is pushed through the blood compartment of the dialyzer. Once the patient's blood is inside the dialyzer, excess fluids and toxins are pulled out of the bloodstream and into the dialysate compartment, where they are carried out of the body. At the same time, electrolytes and other chemicals in the dialysate solution move from the dialysate into the bloodstream. The purified, chemically balanced blood is then returned to the body. Specially trained nurses and dialysis technicians supervise and monitor patients during treatment.

Peritoneal dialysis

In peritoneal dialysis (PD), the peritoneum, (lining of the abdomen) acts as a blood filter. A catheter is surgically inserted into the patient's abdomen. During treatment, the catheter is used to fill the abdominal cavity with liquid dialysate. Waste products and excess fluids move from the patient's bloodstream into the dialysate solution. After a waiting period of 6 to 24 hours, depending on the treatment method used, the waste-filled dialysate is drained from the abdomen, and replaced with clean dialysate. There are three types of peritoneal dialysis, which vary by treatment time and administration method: continuous ambulatory peritoneal dialysis (CAPD), continuous cyclic peritoneal dialysis (CCPD), and intermittent peritoneal dialysis (IPD).

Kidney transplantation

Kidney transplantation involves surgically implanting a functioning kidney, known as a graft, from a brain dead organ donor (a cadaver transplant), or from a living donor, to a patient with ESRD. Patients with chronic renal disease who need a transplant and do not have a living donor register with UNOS (United Network for Organ Sharing), the federal organ procurement agency. UNOS places patients on a waiting list for a cadaver kidney transplant. Kidney availability is based on the patient's health status. When the new kidney is transplanted, the patient's diseased kidneys may or may not be removed, depending on the circumstances surrounding the kidney failure. A regimen of immunosuppressive (anti-rejection) medication is required after transplantation surgery.

Dietary management

A diet low in sodium, potassium, and phosphorous, three substances that healthy kidneys excrete, is critical in managing kidney disease. Other dietary restrictions, such as a reduction in protein, may be prescribed depending on the cause of kidney failure and the type of dialysis treatment employed. Patients with chronic kidney failure also need to limit their fluid intake. Patients may receive instruction about appropriate dietary measures from registered dietitians, nutritionists, nurses, or health educators.

Medications and dietary supplements

Kidney failure patients with hypertension typically take medication to control their high blood pressure. Epoetin alfa, or EPO (Epogen), a hormone therapy, and intravenous or oral iron supplements are used to manage anemia, especially if the kidneys have been surgically removed. A multivitamin may be prescribed to replace vitamins lost during dialysis treatments. Vitamin D, which promotes the absorption of calcium, along with calcium supplements, may also be prescribed.

Since 1973, Medicare has reimbursed up to 80% of ESRD treatment costs, including the costs of dialysis and transplantation as well as the costs of some medications. To qualify for benefits, a patient must be insured or eligible for benefits under Social Security, or be a spouse or child of an eligible American. Private insurance and state Medicaid programs often cover the remaining 20% of treatment costs.

Prognosis

Early diagnosis and treatment of kidney failure is critical to improving length and quality of life in chronic kidney failure patients. Patient outcome varies; it depends on the cause of chronic kidney failure and the method chosen to treat it. Overall, patients with chronic kidney disease leading to ESRD have a shortened life span. According to the United States Renal Data System (USRDS), the life span of an ESRD patient is 18-47% of the life span of the age-sex-race matched general population. ESRD patients on dialysis have a life span that is 16-37% of the general population.

The demand for kidneys to transplant continues to exceed supply. Cadaver kidney transplants have a 50% chance of functioning nine years, and living donor kidneys that are well-matched (have two matching antigen pairs) have a 50% chance of functioning for 24 years. However, some transplant grafts have functioned for more than 30 years.

Health care team roles

Patients with chronic kidney failure are treated by a team that includes nephrologists, dialysis technicians, nurses, radiology technicians, and laboratory technicians. Patients undergoing kidney transplant are cared for by a transplant team headed by a transplant surgeon. Registered dietitians, nutritionists, and nurses instruct patients about dietary changes to manage their disease.

KEY TERMS

End-stage renal disease (ESRD)— Total kidney failure; chronic kidney failure is diagnosed as ESRD when kidney function falls to 5-10% of capacity.

Nephrotic syndrome— Characterized by protein loss in the urine, low protein levels in the blood, and fluid retention.

Ureters— The two ducts that pass urine from each kidney to the bladder.

Resources

BOOKS

Brenner, Barry M., and Floyd C. Rector, Jr., eds. The Kidney, 5th edition. Philadelphia: W.B. Saunders Company, 1996.

Cameron, J. S. Kidney Failure: The Facts. New York: Oxford Univ. Press, 1996.

Ross, Linda M., ed. Kidney and Urinary Tract Diseases and Disorders Sourcebook. Vol. 21. Health Reference Series. Detroit: Omnigraphics, 1997.

U.S. Renal Data System. USRDS 1997 Annual Data Report. Bethesda, MD: The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 1996. (Available in paper and microfiche versions from National Technical Information Service (NTIS), Springfield, VA.)

The Washington Manual of Medical Therapeutics, 30th Edition. Philadelphia: Lippincott Williams & Wilkins., 2001, pp. 267-270.

PERIODICALS

Friedman, Elia A. "End-stage Renal Disease Therapy: An American Success Story." Journal of the American Medical Association 275 (April 1996): 1118-22.

Taylor, Judy H. "End-stage Renal Disease in Children: Diagnosis, Management, and Interventions." Pediatric Nursing 22 (Nov-Dec 1996): 481-92.

ORGANIZATIONS

American Association of Kidney Patients (AAKP). 100 S. Ashley Drive, Suite 280, Tampa, FL 33602. (800)749-2257. 〈http://www.aakp.org〉.

American Kidney Fund (AKF). Suite 1010, 6110 Executive Boulevard, Rockville, MD 20852. (800)638-8299. 〈http://www.arbon.com/kidney/〉.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Natcher Building—6AS-13K, 45 Center Drive, Bethesda, MD 20892-6600. 〈http://www.niddk.nih.gov〉.

National Kidney Foundation (NKF). 30 East 33rd Street, New York, NY 10016. (800)622-9020. 〈http://www.kidney.org〉.

United States Renal Data System (USRDS). USRDS Coordinating Center, 315 W. Huron, Suite 240, Ann Arbor, MI 48103. (313)998-6611. 〈http://www.med.umich.edu/usrds/〉.