1. Background. Most persons with arthritis do not experience clinical depression, although a significant minority of them do. People with arthritis are more likely to experience depression than people without any serious chronic illness. If depression does occur, it can augment the pain and disability associated with arthritis. Depressed patients may feel unsupported by others; this may reflect reality, as it is difficult to be with depressed people.
Although depression is often linked to pain, it is the loss of the ability to perform valued roles and activities (as a result of that pain, inflammation, and subsequent disability) that is a risk factor for the development of depressive symptoms. Patients' psychological interpretations of the meaning of their limitations and role changes may be more significant than their actual disease status.
Depression by itself can be a devastating condition. People with symptoms of depression, in the absence any other health problems, function at a lower level physically and emotionally than do people with any one of a number of diseases. When depressive symptoms occur in combination with or as a result of illness, declines in functioning can be exaggerated.
In addition to being at greater risk than men for some of the more common and serious rheumatic diseases, women also are at greater risk for depression. Within the U.S. population, depression is about twice as prevalent among women than among men. Health practitioners need to be especially alert for depression in women so that both the depression and the rheumatic disease are treated. If depression in women with rheumatic diseases is overlooked, declines in functioning caused by depression can be attributed mistakenly to the rheumatic disease and result in overtreatment or unwarranted changes in therapy. Alternatively, if symptoms of depression are perceived as symptoms of arthritis, female patients may suffer needlessly, given the availability of effective treatments for depression. It is important that health care professionals monitor their patients for depressive symptoms and treat them appropriately, rather than assume that depression is a "normal" and anticipated part of rheumatic disease. Also, the physician should be aware of the fact that steroids may both trigger or worsen depression.
2. Definition. A major depressive episode involves at least 2 weeks of depressed mood or loss of interest or pleasure in nearly all activities, accompanied by at least four of the following symptoms: (a) feelings of worthlessness; (b) excessive or inappropriate feelings of guilt; (c) fatigue or loss of energy; (d) difficulty thinking, concentrating, or making decisions; (e) recurrent thoughts of death or suicide; (f) changes in appetite or weight (not caused by dieting); (g) changes in patterns of sleep or fatigue; (h) decrease or increase in psychomotor activity (e.g., agitation). In addition, the following criteria must be met: the symptoms must appear to cause clinically significant distress or impairment in social, occupational, or other important areas of functioning; are not a consequence of direct physiological effects of medication or a general medical condition; and are not better accounted for by bereavement.
3. Dysthymic disorder involves at least 2 years of a depressed mood that occurs for most of the day on more days than not. At least two of the following symptoms must be present: poor appetite or overeating; insomnia or hypersomnia; low energy or fatigue; low self-esteem; poor concentration or difficulty making decisions; feelings of hopelessness. Additional criteria to be met: The person has never been without the symptoms for more than 2 months at a time, and the mood disturbance is not easily distinguished from the person's "usual" functioning. (In contrast, a major depressive episode represents a change from the person's previous functioning.)
B. Life-style changes. Living with a rheumatic disease not only magnifies the stresses of everyday life but also creates additional ones. Most life-style changes are a direct or indirect result of frequent episodes of pain and increasing physical disability. The majority of patients report decreases in social, recreational, and leisure activities at one time or another. Some of these changes may seem trivial to the health care provider but may have great psychological significance for the patient. These include problems with activities that previously might have been taken for granted, such as performing household chores or getting around one's community easily. These "smaller" problems should not be dismissed offhand, as they accumulate over time and may lead to maladjustment.
1. Changes in paid and unpaid work. Rheumatoid arthritis (RA) has a profound effect on employment status, with many people unable to maintain their jobs as the disability worsens. This may exacerbate financial concerns. "Forced" retirement, medical leave, or the need to change careers in mid-life because of physical limitations can increase psychological distress.
Rheumatic disease affects the ability to perform regular activities of daily life, such as child care, cleaning, personal hygiene, and sports. For many women, loss of the valued roles of care giver and nurturer leads to a decline in self-worth. Patients should be reassured that decreases in activity levels are normal, as is feeling frustrated with one's level of ability. Patients must be encouraged to find new ways to perform tasks, to find new leisure activities, or to redefine roles at home and work.
2. Changes in marital and intimate relationships. The evidence is mixed on whether divorce is more prevalent among persons with rheumatic disease than in the general population. Patients with RA are no more likely to be divorced when compared with patients having other inflammatory rheumatic disorders, but they are more likely to be divorced than are patients with noninflammatory disorders, particularly osteoarthritis of the hip or knee. There is little evidence to suggest that RA precipitates divorce, or that the lower rate of remarriage among patients with RA is associated with disease severity.
Communication, everyday life, and sexual satisfaction seem to be the areas of marriage that are disrupted most. The degree of disability is a major determinant of the extent to which the marital relationship is affected. Spouses may feel frustrated about a reduction in shared pleasurable activities, helpless in response to seeing their wife or husband in pain, and fearful regarding their future.
Positive effects on the marriage are as likely to be experienced as negative ones, although they are seldom reported to physicians. People with RA rate their close relationships (primarily family) at least as favorably as do people in comparison groups. When the onset of the illness is later in life, marital and family relationships may be less vulnerable to disruptions caused by the illness. This may be a result of the long-term nature of these marriages, or because illness onset in late life is a more predictable "on-time" life event, shared by one's peers. For widowed women, however, rheumatic disease may have even greater costs, in terms of reduced sources of support.
3. Sexuality. Persons with rheumatic diseases may be vulnerable to sexual problems because of the physical changes caused by the illness and their attendant emotional distress. However, studies comparing rheumatic disease patients with healthy persons in comparison groups have found no differences in sexual satisfaction, although arthritis patients do report declines in sexual satisfaction with time. Sexual dissatisfaction is greater for those with severe joint involvement or greater functional disability. In one study, some spouses reported not having sex for fear they would hurt their partners.
Some studies conclude that male patients are more dissatisfied and experience greater sexual dysfunction than do female patients, but in others, women reported greater sexual dissatisfaction. In a study of female patients with systemic lupus erythematosus, poor sexual adjustment was best predicted by severe disease, older age, poor premorbid sexual relationships, and poor quality of the current relationship.
Many biologic and psychological factors may lead to sexual problems. Insufficient vaginal lubrication may develop secondary to Sjogren's syndrome or menopause; artificial lubrication may help. If pain is interfering with sexual satisfaction, an extra (or earlier) dose of medication (within the hour) may be helpful. Some patients find it helpful to take a warm bath to relax and minimize stiffness. If pain is less at certain times of day, suggest having sex at those times. Some patients report postcoital pain relief, perhaps as a consequence of feeling loved and the release of endorphins.
Sexual problems are not uncommon in the general population, although couples with rheumatic disease often blame such problems on their illness. Long-standing sexual dysfunction unrelated to the rheumatologic illness will be uncovered by a careful premorbid sexual history.
Avoidance of sex because of embarrassment about joint deformities or steroid-induced changes in appearance have been overemphasized in the clinical literature. Partners may be less interested in sex because of exhaustion or anger created by role changes or added household demands resulting from the illness. This can be addressed by fostering communication between the partners (see section .VI:A).
Sexuality is seldom addressed within the context of the medical visit. Men and women may have very different concerns regarding sexuality; concerns may also vary with age and disease severity. Health care providers should be sensitive to patients' questions and concerns regarding sexuality, and not dismiss them or immediately initiate a psychological referral. Physicians should discuss these issues openly and frequently with both patients and their partners as a routine part of care.
4. Social life. Relations with friends are at more risk than those with family. Reduced mobility and increased pain make social relations outside the home more difficult to maintain; more than half of RA patients report that they visit people less often because of their disease. In addition, patients are less satisfied with these relationships when they do continue. In some cases, social isolation may arise because a patient prefers to avoid the stigma and embarrassment associated with the condition.
Changes in the quantity and quality of close relationships frequently occur. In the years following diagnosis and with initiation of a new treatment, family and friends are quite helpful. With the passage of time, however, friends and family may tire of providing help, and patients may interpret this as withdrawal from them or criticism of their coping strategies. This may occur at a time when patients are becoming less able to care for themselves and actually need more help.
5. Effect of rheumatic disease on family members. Spouses or live-in partners play a dual and sometimes conflicting role; they serve as the primary provider of support to the patient, but at the same time, they experience stress because of the illness. Spouses often encounter anxiety, marital communication difficulties, and problems at work, but they do not appear to manifest clinical levels of psychopathology. Spouses report the greatest intrusion of illness in the areas of social and leisure activities, family activities, and sex.
Frequent episodes of pain, increasing disability, an unpredictable course of illness, and financial pressures brought on by the illness may affect the spouse's ability to be supportive for the long-haul. The societal pressures embodied in marriage vows ("In sickness and in health, 'till death do us part") may create feelings of resentment, anger, and guilt. If the patient is depressed, it is difficult to provide empathy and help, and when one does, the task is unrewarding. With advancing age, many spouses have health limitations themselves, which makes tending to their mates' physical and emotional needs more difficult.
There is little research on families of children with juvenile rheumatoid arthritis (JRA) or on children of parents with rheumatic disease. Having a child with JRA creates many new stressors and coping tasks, similar to those experienced by adults but handled differently in terms of the child's cognitive abilities and life context (school, team sports, dating). Compliance problems with treatment can create family conflict, and healthy siblings may vie for attention. Many families, however, are pulled closer together in coping with the illness.
The children of a parent with rheumatic disease do not show a greater level of depression than do the children of healthy parents; however, in adolescence, they may be embarrassed by a parent's illness.
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