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Rheumatoid arthritis (RA) is a chronic, disabling inﬂammatory disease with pain and stiffness in the joints. RA with its often unpredictable and painful course has a considerable impact on patients’ lives. The disease has physical as well as behavioral and psychosocial implications for the patient and their family. On the other hand, behavioral and psychosocial factors may be determinants of disease development and of patients’ ability to adapt to the condition. Over the last two decades there has been an increasing interest in psycho-educational interventions such as patient education or cognitive-behavioral therapies to help patients deal with the consequences of their disease.
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2. Disease Characteristics
RA is a chronic disease characterized by inﬂammation of joints and joint tissues (Wegener et al. 1996). Some patients may experience remission of the disease without any noticeable damage. As the disease progresses and becomes chronic, the inﬂammation may lead to joint damage and disability. Cardinal symptoms are joint pain and swelling, morning stiffness, malaise, and fatigue. The course of the disease is highly variable. Patients experience periods of remission and exacerbation of the inﬂammatory activity. Sometimes patients feel very good and in other periods they feel worse.
The prevalence of RA is about 0.5–1 percent of the population in most cultures. The disease can affect people of all ages, including children, but the onset is usually between the ages of 40–50 years. Women are more affected than men; the overall ratio is 3 to 1.
3. Psychosocial Factors Related To The Onset And Course Of RA
There has been much research into the role of personality characteristics (‘arthritic personality’) and stress in the onset and course of RA. However, there is no empirical evidence for the hypothesis that certain personality characteristics predispose individuals to get RA. More recent research shows that psychological characteristics in RA patients are reactions to the physical disease process rather than causal factors.
There are indications that stressful life events are related to the disease process in RA. The mechanisms through which stress exerts its inﬂuence on the disease process are still unclear. Recent developments indicate that stress inﬂuences physiological processes. Relationships have been found between minor stresses (daily hassles, such as car breakdowns, arguing with spouse) and disease exacerbation. Recent evidence suggests that major life events (e.g., death, divorce) are associated with RA improvement (Huyser and Parker 1998). It appears that physiological processes mediate the relationships between environmental stressors and disease activity in RA. Psychological factors (e.g., coping style, social support) appear to moderate these processes. A greater understanding of the complex relationships between stress and RA requires integrative studies that simultaneously consider environmental, physiological, and psychological factors (Huyser and Parker 1998).
4. Physical, Psychological, And Social Consequences Of RA
For the patient with RA it is probably less signiﬁcant that stress inﬂuences the process of his or her disease than it is that RA with its often unpredictable and painful course has a stressful impact on the life of the patient.
4.1 Physical Consequences
Disability and pain are major outcomes of RA. Many patients are restricted in their mobility, both inside and outside of the house, and have problems with activities of daily living such as dressing, bathing, housekeeping, or cooking. They often need the help of others to perform these activities. Most patients see not being able to do things and dependence upon others as the main disadvantages of their disease (Cornelissen et al. 1988, Taal et al. 1993). Pain is generally regarded as one of the most important consequences of RA and a major challenge for patients as well as healthcare providers. For many patients, however, it seems that pain is not their main concern, but the restrictions in daily functioning and the lack of independence, probably for a great deal caused by the pain (Taal et al. 1993).
Another signiﬁcant problem for people with RA is fatigue. Studies have found that the prevalence of fatigue in adults with RA ranges from 80 to 93 percent (Riemsma et al. 1998). Fatigue has multiple causes that include physiological, psychological, and environmental factors.
4.2 Psychological Consequences
Feelings of depression and anxiety are often mentioned as psychological consequences of RA. Studies among RA patients have found heightened depression scores on self-report questionnaires such as the MMPI and the Beck Depression Inventory (BDI). Using a structured interview (Diagnostic Interview Schedule), Frank et al. (1988) found that 42 percent of the patients with RA in their study met criteria for some form of depression, and 17 percent met criteria for major depressive disorder. These rates of depression are higher than those found in community populations, but approximate the rates found in other chronic diseases. An important methodological problem in the assessment of the psychological impact of rheumatic disease is that many instruments such as the MMPI or the BDI were originally validated in psychiatric patients. Depression scales may overestimate the prevalence and severity of depression among persons with arthritis due to the endorsement of somatically related items such as ‘I felt everything I did was an effort’ or ‘I am about as able to work as I ever was’ (Wegener et al. 1996). Questions about physical symptoms may be accurate to assess emotional distress among psychiatric patients, but in arthritis patients these questions measure symptoms that reﬂect their actual physical condition.
4.3 Family Relationships
RA has a considerable impact on the patient’s family. Patients can no longer fulﬁll all their family roles such as household chores, maintaining family ties, or shopping. Limitations in family role function are related to a diminished psychological well-being among people with RA. The disease affects the relationship with the spouse. This relationship does not always deteriorate, often spouses grow closer to the patient (Revenson 1993).
RA patients may have sexual problems, mainly caused by physical limitations, pain, and fatigue (Van Berlo et al. 1999). Stiff and painful knees and limited range of motion can hinder sexual intercourse. It has been found that RA patients have a decreased sexual motivation, but no decreases in frequency of sexual activity and intensity of orgasm compared to controls. Patients with RA experience greater loss of sexual satisfaction over time than controls, and greater functional disability is related to greater sexual dissatisfaction (Van Berlo et al. 1999).
4.4 Social Contacts
A chronic disease such as RA can lead to diminished social contacts. Reduced mobility, loss of work, or the inability to be involved in hobbies or sports may cause this. It has been found that RA patients have fewer opportunities for contacts with friends and acquaintances, and less satisfaction with these relationships. Cornelissen et al. (1988) established that a reduction of social contacts was mainly found among patients who lived in cities and less in patients living in rural areas. A decrease in social activities among arthritis patients was found not to be strongly related to the severity of the disease (Cornelissen et al. 1988, Taal et al. 1993).
4.5 Work Disability
Many RA patients experience problems in their work and often become work disabled (Wegener et al. 1996). After 10 years of disease, between 25 percent and 50 percent of patients with RA have stopped working, and after 30 years of disease about 90 percent of patients are work disabled. The most important individual risk factors for work disability among patients with RA are poor disease status, greater job physical demand, and older age. Other risk factors are lack of control over work pace and other work activities, less education, less support from family members and co-workers, and depression.
5. Behavioral And Psychosocial Determinants Of The Adjustment To The Consequences Of RA
The impact of RA on physical and psychosocial functioning is not directly related to the severity of the disease, but there is considerable individual variation in adjustment to the disease.
Several studies have demonstrated relationships between the use of certain coping strategies and psychological adjustment (Manne and Zautra 1992). Coping can be deﬁned as a patient’s cognitive, behavioral, and emotional efforts to manage speciﬁc internal or external demands. RA patients’ use of emotion-focused coping strategies, such as wishfulﬁlling fantasies and self-blame, is associated with poor psychological adjustment, while the use of problem-focused coping strategies, such as information seeking and cognitive restructuring, is related to good psychological adjustment. From studies on coping with pain, it can be concluded that the use of active and problem-focused coping strategies (e.g., diverting attention from the pain, increasing activity level, ignoring pain) is related to less pain and less depression, while the use of passive and emotion focused strategies (e.g., restricting social activities, praying, catastrophizing) is related to more pain and worse psychological adjustment.
Perceptions of control over one’s situation, such as self-efficacy or learned helplessness, inﬂuence the way people cope and adapt to the stresses of their disease. It has been shown that self-efficacy and learned helplessness are related to pain, disability, and psychological well-being in arthritis patients (Taal et al. 1996). Self-efficacy refers to beliefs in one’s capabilities to success-fully execute the behavior required to produce a certain desired outcome. Learned helplessness refers to the experience of having no control over one’s life, in general, and across different situations. The unpredictable nature of RA and the varying disease activity may cause patients to view their disease as uncontrollable. This often leads to low self-efficacy expectations about needed causes of action to cope with the consequences of the disease or to more generalized feelings of learned helplessness.
Social support, for example from family and friends, can also play a signiﬁcant role in the adaptation to the disease. A distinction must be made between structural aspects of social support, such as the size of the social network, and qualitative aspects, such as perceived social support. Perceived social support refers to the perceived comfort, caring, esteem, or instrumental help a person receives from others. In several studies with RA patients, it was found that more perceived social support was related to improved psychological wellbeing (Revenson 1993). In most studies, however, the size of the social network did not seem to have a strong relationship with psychological well-being. An exception is a study by Evers et al. (1997) among recently diagnosed RA patients. They found that patients who have a smaller social network shortly after diagnosis showed an increase in depressed mood after one year. They concluded that an extended social network which probably offers broad sources of support seems to be more important for the psychological adaptation of a patient shortly after diagnosis, when usual patterns of life are disturbed and many life domains have to be reorganized, than at a more progressive stage of the disease.
Social interactions do not only have positive effects on well being: negative aspects of social interactions can decrease well-being. Manne and Zautra (1989) found in a study with female RA patients that critical remarks made by the husband were related to maladaptive coping by the patient, which in turn led to a worse psychological well-being. Problematic aspects of social support (for instance support that is neither desired, needed, nor requested, or when the type of support does not match the recipient’s needs) were found to be related to psychological depression (Revenson 1993).
6. Psycho-Educational Interventions
Psycho-educational programs can teach patients the knowledge and skills they need to manage the consequences of their disease. This should eventually lead to an improved physical, psychological, and social functioning. A wide range of behaviors can be important in the management of RA. Among the behaviors that are thought to inﬂuence physical and psychosocial health status are adherence to medication regimens, physical exercise, relaxation exercises, joint protection measures, rest, pain coping strategies, and problem-solving (Taal et al. 1996). A well-known and successful American educational program is the Arthritis SelfManagement Program (ASMP; Lorig and Holman 1993). In this program self-efficacy enhancing strategies, such as skills mastery and modeling, were used. Participation in this course resulted in improved self-efficacy, more consistent performance of health practices, reductions in pain, and improved physical functioning and psychological well-being among patients with various rheumatic diseases. Changes in self-efficacy were related to changes in health status. A Dutch self-management program, partly based on the ASMP, showed beneﬁcial short-term effects on knowledge, self-efficacy, performance of learned skills, physical function, and joint tenderness (Taal et al. 1996). After 14 months, effects were still found on knowledge, self-efficacy, and the practice of physical exercises, but most effects had disappeared.
Next to self-management programs, cognitive-behavioral therapy programs have been developed that are mainly aimed at the teaching of skills to cope with pain. Examples of skills that are taught in these programs are relaxation exercises, active coping strategies, such as diverting attention from the pain, and problem-solving skills (Keefe and Van Horn 1993). These programs have shown promising effects on the performance of coping strategies, pain, and physical and psychosocial functioning. Parker et al. (1995) evaluated an individual stress-management program for RA patients that included relaxation training and instruction in cognitive-behavioral coping strategies for managing stress and pain. Signiﬁcant improvements were found on measures of learned helplessness, self-efficacy, coping, pain, and disability.
Long-term effects of psycho-educational interventions on pain, disability, or psychological wellbeing of RA patients are not often found (Keefe and Van Horn 1993, Taal et al. 1996). It is necessary to look for ways to improve the long-term beneﬁts of psycho-educational interventions, for instance by including booster sessions in educational programs, teaching patients skills for the prevention of relapse (e.g., learning to identify high-risk situations and early warning signs, methods for coping with setbacks), or the improvement of social support through the involvement of patients’ family members in educational programs (Keefe and Van Horn 1993, Taal et al. 1996). Radojevic et al. (1992) showed that cognitive-behavioral therapy with active involvement of a family member led to greater health beneﬁts among RA patients than cognitive-behavioral therapy without family support.
It can be concluded that psycho-educational interventions that teach patients with RA self-management skills and strategies for coping with pain and stress show promising results, but ways to improve long-term beneﬁts have to be looked for. However, it must be emphasized that psycho-educational interventions for patients with RA can only be supplementary to medical treatment.
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