59.

Chapter 52 Psychosocial Aspects of the Rheumatic Diseases

Manual of Rheumatology and Outpatient Orthopedic Disorders

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Chapter 52 Psychosocial Aspects of the Rheumatic Diseases

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Tracey A. Revenson

Overview
Psychosocial effects of rheumatic disease
Factors promoting psychological adaptation to rheumatic disease
Gender myths
Psychological interventions
Practice guidelines
Resources

I. Overview

This chapter addresses psychological and social issues that many patients face in the course of living with rheumatic diseases. Most patients are mentally healthy at the time their illness is diagnosed, but they may show signs of being under great psychological stress throughout the course of their illness .

Living with rheumatic disease involves facing a number of psychosocial stresses and challenges. In addition to coming to terms with the meaning of the illness for one's life and the more existential issues of disease progression and deformity, persons with rheumatic disease must cope with pain, stiffness, fatigue, and physical activity restrictions on a daily basis. Many of these adaptive challenges require help from others. Thus, patients with rheumatic disease need an available and satisfying network of interpersonal relations on which they can count for both emotional sustenance and more practical help during periods of pain and disability.

Although, from a medical point of view, the rheumatic diseases may differ in regard to presentation and treatment, they are all associated with several psychosocial coping tasks . These include (a) pain, (b) disability and loss of role functioning (real and anxiety over anticipated losses), (c) increased risk for depression, (d) ongoing and often frustrating interactions with the health care system, (e) the need to adhere to a prescribed and often changing treatment regimen, (f) changes in life-style and appearance, (g) changes in interpersonal relationships, (h) the need to tolerate uncertainty, and (i) in some, the possibility of death. Patients also must work to maintain their self-esteem, mastery, and interpersonal relationships. As symptoms, disease course, and prognosis are unpredictable and may change over time, the salience of these coping tasks changes as well. However, the need to tolerate uncertainty is an ever-present issue and one that can be both frustrating and frightening.

II. Psychosocial effects of rheumatic disease

1. Depression
   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.)
2. 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 Sj gren'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.

      Depression itself may lead to fatigue, malaise, and decreased libido. Medications, particularly those for depression and hypertension, may adversely affect libido and sexual arousal.

      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.

III. Factors promoting psychological adaptation to rheumatic disease

1. Sense of personal control over the illness. The extent to which patients maintain a sense of control over their illness appears to have a significant impact on their adjustment. Perception of personal control over treatment is related to positive mood, and perceived control over pain is related to less daily pain with time. Patients who perceive having little control over their illness and who attribute the cause of an arthritis flare to personal rather than external factors are more likely to experience depression.
2. Coping mechanisms. Coping is defined as both cognitive and behavioral efforts to manage specific external and internal demands that are viewed as exceeding a person's psychological, social, and financial resources. Coping is not synonymous with adaptational outcomes . Coping efforts may have good or poor results and should not be judged a priori as adaptive or maladaptive.

   Coping efforts can be directed toward dealing with the stressful situation itself, managing psychological distress aroused by the situation, or maintaining interpersonal relationships. Most stressful situations evoke all three modes of coping. On learning of their diagnosis, patients may need to minimize the seriousness of their situation or they will be flooded with emotions and not be able to act. Slowly, the patient can acknowledge emotions and deal with the situation in a more adaptive fashion, such as by seeking information to make a treatment decision. Many patients try to normalize or pass as healthy, performing activities that are not advisable.

   People tend to have fairly stable coping styles. For example, some are optimists and others are pessimists; some perceive a good deal of control over their illness, whereas others believe it is better left to fate; some want to know everything about the illness ( monitors ), yet others prefer not to know (blunters). However, aspects of a patient's current life and medical situation, such as pain, disease progression, level of disability, any concomitant diseases, financial resources, and availability of social support all influence coping.

   Whereas men use more active strategies, women's strategies are more focused on managing their emotions, such as seeking social support. Women tend to have more flexible coping repertoires and thus may be more willing to try new approaches.

3. Effectiveness of coping strategies. Strategies such as actively seeking information about the illness, seeking support from others, and trying to view one's situation in a more positive light have been associated with better psychological functioning. Coping strategies that involve wishful thinking, fantasizing, self-blame, avoidance, and denial are associated with poorer psychological functioning. However, reports of emotion-focused coping strategies such as self-blame may reflect levels of distress rather than actual coping efforts.

   The effectiveness of particular ways of coping depends on the degree of personal control the patient has over the situation and whether the patient believes that the coping strategy will be effective. A particular coping strategy might result in good outcomes in some areas and poor outcomes in others. For example, strategies to reduce tension, such as drinking or sleeping, may make patients feel better temporarily but diminish their overall physical health status. Similarly, a coping strategy that has worked in a similar situation in the past (such as a pain flare) may not work the next time that the situation occurs. The effects of a patient's coping efforts may not appear immediately. Daily diary studies indicate that the effects of any particular coping strategy may not appear until one or more days after it is employed.

   A person's coping efforts may not be effective if they conflict with the coping styles of family members. For example, expressing anger at a spouse may reduce a patient's tension but increase the spouse's tension, which may in turn lead to reduced support. Patients also may feel depressed if family members criticize their coping efforts. The families of children with JRA that cope in a unified fashion and keep channels of communication open fare better than do families in which the styles of individual members conflict with one another. However, dissimilar coping styles between husbands and wives do not result automatically in adjustment problems, greater psychological distress, or lower levels of marital adjustment.

4. Social support. Social support refers to interpersonal exchanges that provide information, emotional reassurance, material assistance, and a sense of continued self-esteem. The family is an important source of support, but this can also be provided by friends and health professionals.

   Social support from friends and family can bolster the coping efforts of patients, particularly those with severe pain and disability. Patients who receive more support from friends and family exhibit greater self-esteem, psychological adjustment, and life satisfaction, cope more effectively, and are less depressed. Social support also has been shown to affect immune functioning. Family support can serve as an adjunct to professional treatment. Support from family members has been shown to enhance the effects of psychological treatment and help patients maintain initial treatment gains. Emotional support is most beneficial during periods of great illness-related stress.

   Most simply, social support provides coping assistance. It provides feedback and new information; helps patients come to a better understanding of the problem faced; increases their motivation to take instrumental, problem-focused action; and reduces emotional stress, which may impede more adaptive coping efforts. Support reinforces the performance of positive health behaviors and compliance with treatment recommendations, which leads to greater overall health and control of disease.

   Different types of support, from different sources, may be more helpful at various points in the illness. Early in the disease, there is a strong desire for information. As patients begin to adjust to the medical management of their illness, emotional support is most helpful. As the illness progresses and patients often have to cope with increasing physical limitations and changes in prescribed treatment, greater tangible assistance with the chores of everyday living in addition to continued emotional support is most helpful. It is likely to be important throughout the course of the illness because support makes patients feel loved, valued, and part of a family or community.

   Requesting social support does have costs as well as benefits. Common types of unhelpful support are minimizing the severity of an illness or the patient's pain; making pessimistic comments about the patient's ability or health status; criticizing the patient's coping efforts; pitying the patient; and offering help when it is not wanted. Even well-intentioned support from close friends and family may backfire if patients do not want the help or comfort that is offered . For example, if a patient is not too disabled, she may resent offers of help because it interferes with her self-image as a healthy person and usurps social roles she values. In these circumstances, the patient may reject the emotional support or tangible help being provided.

   For patients to benefit from social support, the type of support offered must fit in with what the patient needs at that time. Unwanted or unhelpful support leads to negative affective states, diminished self-esteem, loss of autonomy, and decreased psychological well-being. New tensions within a relationship may emerge. Patients who receive little positive support at the same time that they receive a lot of unhelpful support from their friends and family are at highest risk for depression. At all periods of an illness, it is important to stress that patients must communicate clearly their feelings and needs for help, and that family and friends must learn to listen and respond to patients' needs, not their own. Patients experiencing a good deal of pain and disability are most affected by others' critical comments. Low levels of spousal support may be an indication of marital discord and deeper psychological problems, which may warrant psychological referral.

   Support for family members. Support from naturally occurring social ties enables family members to cope as well. Spouses who receive support outside the marital relationship are able to be more supportive to a sick partner. Outside support may alleviate some of the burden of providing care or provide a safe outlet for expressing negative feelings.

5. Compliance with treatment
   1. Generic issues. Treatment efficacy depends on patients' carrying out therapeutic recommendations. Treatment often includes behavioral recommendations, such as daily exercise and wearing splints, keeping regularly scheduled appointments for medical checkups, and physical or occupational therapy. Sometimes, treatment involves major life-style changes, such as changing diet or work habits.

      Compliance with the appropriate use of prescribed medication ranges from 30% to 78% for rheumatic disease patients. Rates of noncompliance with exercise regimens are equivalent to or higher than those for oral medication, with values as high as 34% to 62%. Both patients and physicians overestimate compliance, possibly because direct and specific questions regarding compliance are rarely asked during a medical visit.

      Risk factors for noncompliance are numerous , some logged within the person, and others related to the treatment or the patient-physician relationship. Characteristics of the treatment regimen include duration, complexity, number of changes, and extent of somatic and emotional side effects. Patient characteristics include age, social class, beliefs about treatment efficacy, and cultural concepts about disease.

      Characteristics derived from the patient's social context include support or criticism from friends and family, and encouragement and interest from persons in the health care setting. Because physicians have more kinds of power than allied health professionals, patients are more likely to listen to them. Patient-physician communication may be the single most important variable affecting compliance and satisfaction with medical care. Patients are not active in seeking information, and physicians are not active in giving it. Poor patient-physician communication is a result of the time constraints of most medical visits , impersonal health care environments, and inequity in power and status residing within the patient-physician encounter. Physicians tend to use medical terms when providing information, and patients are unfamiliar with the medical language. Patients and physicians may not speak the same language or may be of different ethnic backgrounds; in these cases, it is essential to ascertain that the information is being provided clearly and understood . Often, reading materials may be written at a level above the patient's comprehension .

      Physicians often underestimate how much information patients want, and patients often fail to inform the physician when they do not understand the information presented. Physicians often do not understand the amount and type of information that patients want, and the methods they prefer for obtaining it.

      Perceptions of a physician's caring, warmth, sensitivity, concern, friendliness, interest, and respect also affect adherence to treatment regimens. Satisfaction with care increases when the physician addresses the patient's concerns before the end of the visit. Physicians may not elicit or discuss psychosocial concerns because they believe they are irrelevant, time-consuming , or outside their field of expertise.

   2. Increasing compliance
      1. Treatment partnership. Make patients partners in their treatment. Talk about models of disease progression and treatment goals so that patients can share those goals with you. It is important for patients and physicians to share the same cognitive models of the disease and its treatment.
      2. Describe the treatment rationale. Help the patient understand why treatment is necessary, and what the short- and long-term goals of treatment are (functional improvement, decreased pain, decreased inflammation). The expected time course for improvement should be made explicit.
      3. Set goals. Set short-term goals that can be accomplished by the next visit.
      4. Explain and clarify. Present information clearly. It is equally important for patients to feel comfortable asking the physician to clarify anything that they do not understand (see section E.1 ). Dispel any false beliefs about the treatment (e.g., that medication loses its efficacy over time, that medication should be used only when symptoms are present or when pain is unbearable).
      5. Describe possible adverse effects. It is a good idea to warn patients of any anticipated side effects and provide methods to minimize them. Common perceived side effects include decreased libido, fatigue, and depression.
      6. Simplify treatment regimens (e.g., by prescribing, if appropriate, daily medication in one dose instead of in multiple administrations , or by recommending exercises that can be fitted into the patient's daily schedule). This is likely to enhance self-efficacy beliefs and treatment adherence.

         Identify potential and real difficulties with compliance. Before the end of the visit, make a plan incorporating the patient's input to overcome these difficulties by the next visit.

         Provide written treatment information. As physicians' handwriting is often illegible, have handouts prepared in advanced to cover the most common situations. The Arthritis Foundation also can provide materials.

      7. Respect the patient. Respect a patient's use of holistic remedies if they do not interfere with treatment. They may help and, at a minimum, may increase a patient's sense of well-being.

         Never threaten a patient. Threats or warnings, such as You're killing yourself by not taking your medications, are not effective, particularly when patients are given concrete strategies to change such behavior. Furthermore, threats may jeopardize the patient's satisfaction with medical care and trust in the physician.

      8. Medication reviews. Patients should be asked periodically to review their medication dosage and schedule with the physician, even in the absence of changes. Such reviews will uncover unintentional noncompliance resulting from simple misunderstanding. This and other behavioral technologies, such as putting tracking caps on pill bottles, may increase compliance by reinforcing its importance. Make clear that the purpose of such monitoring is to help patients with difficulties in adhering to a medication schedule, and not to punish or humiliate them.

         Forgetful persons should be taught to leave themselves notes in prominent places or elicit the aid of a family member. There are many new pill containers that separate the administrations by day and time, and programmable watches with beepers have been used successfully as reminders. If manual dexterity is severely limited, be sure that patients obtain medication bottles with easy-open caps.

      9. Family participation. Having family members remind patients to take medication or do exercises does not work consistently. In some cases, it can be extremely helpful; in others, in creates feelings of social control, which often result in a psychological reaction of doing what one wants in the face of loss of personal freedoms. This often occurs during early adolescence for JRA patients, when parents are transferring responsibility for taking medication or doing exercises to their children.
      10. Appreciate costs. Be attentive to patient concerns about out-of-pocket expenses. Explain the short- and long-term benefits. Suggest that the patient calculate the cost per day. Prescribe a generic drug, if possible, or contact the patient's managed care organization if necessary. Many pharmaceutical companies have special plans to make drugs available to those patients who need, but cannot afford, a medication. Contact your pharmaceutical representative to find out about such programs.
      11. Fit treatment into the patient's life. For increasing compliance with exercise regimens, ask the physical therapist if the exercises can be made more congruent with the patient's daily schedule or with other physical activities.
   3. Open up lines of communication. Aside from the importance of listening carefully to you patient during a visit, some patients also like to communicate with you via fax or e-mail. Employing these technologies can foster a relationship that fits into you and your patient's schedules.

IV. Gender myths. Gender differences have been discussed in several places within this chapter. However, we know little about psychological differences between the sexes in terms of their adjustment to rheumatic disease. This is, in part, because most research has studied only patients of one sex ”most often women. Thus, it is important to acknowledge areas in which gender differences do not occur and note those for which we have evidence of important gender differences.

1. Reporting symptoms. When men and women are compared, women report more symptoms than men do. However, when differences between men and women regarding disease severity (e.g., joint appearance) and sociodemographic characteristics (e.g., age, income) are taken into account, women report fewer symptoms than men. Given comparable severity of disease, women do not exaggerate symptoms and may, in fact, report RA symptoms more conservatively than men.
2. Impact on work. Arthritis may have an even more severe effect on employment for women than for men. The economic impact of women's work disability is probably underestimated because their nurturing, teaching, and housekeeping work in the paid labor market is economically undervalued. Furthermore, the economic value of work that women do at home without pay is undervalued even more. Women with RA who have more significant homemaker responsibilities are less likely to be disabled than women with fewer responsibilities (even after disease severity and functional status are equalized statistically). In fact, having a greater number of homemaker responsibilities may enhance a woman 's sense of self-worth and social functioning. An ergonomic prescription is as important as one for medication. The physician should attempt to improve the work environment or recommend work-share programs in order to optimize the patient's ability to maintain their desired position or occupation .
3. Effects of gender on treatment. Some recent research suggests that gender may affect the nature and quality of treatment across a variety of medical conditions. However, there is currently little information on whether specific procedures, drugs, or treatment strategies differ for female and male patients with rheumatic disorders.

   Any disparities may result from a number of factors. Physicians may base treatment outcomes on differential expectations of treatment success for men and women or may have stereotyped expectations about male and female patients. For example, female patients with fibromyalgia syndrome are often told at first that their symptoms are imagined or psychological in origin. One study found that women undergo major orthopedic surgery at a more advance stage in their disease, and this gender difference could not be explained by other medical variables , such as disease severity. One explanation is that women wait longer for surgery because of family care-giving demands.

V. Psychological interventions. In addition to biomedical treatment, participation in psychological interventions can contribute to decreases in physical symptoms and improvements in quality of life. A wide variety of psychological and educational interventions for people with rheumatic disease have been developed. The overall aim of these interventions is to minimize the impact of arthritis on patients' physical, psychological, and social functioning. Most psychological interventions are multimodal and usually include one or more of the following components : provision of general information about arthritis, instruction in arthritis self-management and coping skills, sharing of concerns, biofeedback, cognitive-behavioral techniques, relaxation techniques, and hypnosis to aid relaxation. There is little evidence that providing information about arthritis, by itself, has a beneficial effect on therapeutic outcomes.

1. Cognitive-behavioral therapy is a type of psychological intervention in which patients are taught specific skills, including relaxation techniques, goal setting, and activity pacing, and receive training in coping skills to help them control problems such as pain. Cognitive-behavioral therapy can occur within either group or individual settings. Controlled studies of RA patients who participated in cognitive-behavioral therapy interventions have found positive effects at the end of treatment, which sometimes are sustained through subsequent follow-up assessments.
2. The Arthritis Self-Management Program (ASMP), offered through local chapters of the Arthritis Foundation, is a structured group intervention led by trained lay persons with arthritis. Reported benefits of the program include increased knowledge, improved self-care behaviors, such as exercise and relaxation, and decreased pain. The ASMP teaches basic arthritis self-management skills, such as the development of individualized exercise regimens and cognitive pain management strategies. Recent revisions of the ASMP emphasize the enhancement of patients' self-efficacy to manage their arthritis.

   Mutual help or support group discussions provide avenues for discussing problems and coping solutions. They also reassure members that they are not alone. People who are coping well with their illness may serve as strong role models.

   Multimodal treatments have beneficial effects in terms of decreasing disease activity, joint swelling, pain, and impairment, and anxiety. They also have been shown to increase self-efficacy and improve perceptions of pain control. Most of these benefits are short-lived, however, and dissipate in the months following treatment unless follow-up booster sessions are provided. Psychological interventions may be most helpful during flares or surgery to replace joints, or when treatment does not seem to be working. Families occasionally participate in multicomponent programs or in the ASMP, and this participation often augments the benefits of individual treatment.

VI. Practice guidelines. Guidelines for attending to the psychological well-being of your patients, improving your communication skills, and increasing compliance are presented:

1. Increasing the psychological well-being of your patients
   1. Be on the lookout for symptoms of dysthymia or a major depressive episode, so that professional treatment can be obtained immediately.
   2. Serve as a source of information concerning mental health problems before patients have to ask for it. Have information available on community resources, psychological counseling within the hospital, and support groups or patient education programs offered through the local chapter of the Arthritis Foundation. Patients may also be directed to websites with current information. This resource sharing is best presented early in the illness. A brief list of resources can be found at the end of this chapter. It may be advantageous to have a printed list to hand to patients.
   3. Offer emotional support. Physicians can offer emotional support during medical visits with little effort. During medical visits, physicians can ask patients about the stresses in their lives and simply listen. This not only increases patient satisfaction but may provide early clues regarding the onset of depression.

      Help patients to evaluate the meaning of illness in their lives more positively, and not to see only the negative aspects.

   4. Actively involve family members in the patient's care. On the most basic level, patients with stronger support systems are more compliant with treatment. Involve family members in treatment from the beginning, not merely during a crisis. Family members need to understand the nature and severity of the patient's illness and the details of treatment if they are to be helpful. Informing family members about such simple things as what to expect when flares occur and potential side effects of medication may serve to minimize problems. Encourage family members to join in discussions during medical visits. Encourage family members to reinforce patients' coping efforts and learn to offer help that does not undermine patients' self-esteem.

      Strengthen communication skills among family members. Many of the unintended consequences of helping result from faulty communication or misinterpretation of the patient's need for support. Focus on how the illness affects the marriage or how it affects the family's daily life. Discussions can be started with questions such as, How do you feel when your daughter provides help to you? Or when she asks what you're thinking? Or to the husband, How do you feel when your wife is complaining about her pain?

      Encourage patients and family members to build support networks outside the family. Stress to patients and family members the importance of having people available to provide emotional support in addition to those living in the household. Suggest that they start with people in existing networks, such as groups involved in neighborhood activities, local churches or synagogues, and the patient's workplace. Encourage families to use joint support groups or telephone help lines. This should begin early in the illness, as social networks must be built up and strengthened in the early stages of the illness so that they are available during crises . This advice may be even more important for men, for whom their spouse is often the primary or sole source of support. Men have fewer close ties and are less likely to seek support from them. Encourage male patients and male spouses to attend support groups and open up, even though it might be difficult.

      It is worthwhile to attend to family members' difficulties in supporting your patient. Only about one-third of patients and partners seek any kind of help from mental health professionals or participate in support groups. Although the practitioner may feel responsible for the patient's physical health, the psychological well-being of family members may directly or indirectly affect the patient's response to treatment.

2. Improving communication with your patients and their families. The manner in which physicians inform patients about their illness plays an important role in how they form their beliefs about the implications of their illness, their views of treatment, and their impression of the physician. It has been linked in numerous studies to patients' satisfaction with their physician and treatment, and compliance with prescribed treatment.
   1. Assess the disease knowledge of patients with newly diagnosed arthritis. Dispel any false beliefs, such as that the patient brought on the disease or that their is no treatment for the disease.
   2. Ensure understanding of treatment. Ensure that the patient understands the basic details of treatment by giving instructions that are explicit, clear, and unambiguous. This may not be as obvious as it sounds, as it has been demonstrated that many patients do not even know the names of their medications.
   3. Optimize communication of information. Do not give too much or too little information. People can remember only 7 ± 2 bits of information at a time, and this number is probably reduced by the anxiety of being in a physician's office.
   4. Stress basic issues. Go over basic issues slowly and clearly and provide any information necessary for making decisions about treatments. Do not be evasive, but do not overwhelm the patient with information either.
   5. Avoid jargon. Work hard not to use medical jargon without defining terms.
   6. Assess feedback. To see how well you have done, ask patients to paraphrase the instructions that they have been given before the end of the visit.
   7. Repeat and utilize information. Repeat the most important information again at the close of the visit. Provide a written handout from your office and supplement it with pamphlets from the Arthritis Foundation.
   8. Encourage questions. Encourage patients to write out questions for you before they arrive for their checkups; that way, they do not have to worry about remembering their concerns.
   9. Consider communicating by electronic mail or fax. Some physicians have found that communicating with their patients by electronic mail or fax is useful for responding to questions forgotten during the medical visit and providing a sense of being there between visits.
3. Communicating about sex
   1. Initiate a discussion. Do not leave it to patients to initiate discussions of sex. Physicians are responsible for broaching the topic in a sensitive manner, and this can be deferred until the patient and physician have developed a relationship.
   2. Be educational. Start with questions that are relevant to the patient and have the potential to be educational. For a patient with severe hip arthritis, the physician may say, Many people with hip arthritis find that pain and limitation of motion interfere with their sex life; has this happened to you (and your spouse)? This can be followed by a more general probe about sexual satisfaction based on the patient's response.
   3. Review medications with the patient to determine the possibility of eliminating any that potentially may interfere with sexual functioning.
   4. Sexual counseling. Some physicians may be interested in and feel comfortable providing sexual counseling. Others may wish to refer patients to a marriage or sex therapist. A useful publication is Living and Loving with Arthritis, published by the American College of Rheumatology.
4. Increasing satisfaction with care
   1. Optimize the doctor-patient relationship. Enough cannot be said about the importance of a good doctor-patient relationship. What makes for a good relationship varies from patient to patient. Clearly, empathy, trust, and communication are most important. The effects of friendly versus casual styles of interacting vary according to the gender match of the patient and the physician.
   2. Determine the patient's personality style. Some patients find it important to be involved in a major way in any decision-making process; others want no part in it. It may take several visits to peg the patient's style. This may vary with age, socioeconomic background, and ethnic group and may change with time.
   3. Minimize waiting, and listen to the patient's responses to questions. Minimize waiting time for medical visits. Perceived waiting time is inversely correlated with satisfaction and compliance. Some physicians have receptionists call patients several hours in advance if they are running extremely late, offering the opportunity to make a new appointment within the week.

      Always treat a patient as you would wish you and your family to be treated. Apologize for long delays and do not rush the visit to make up time. Both satisfaction with care and compliance increase if patients feel that they have been given adequate time with the physician. Feel is a key word. Perceived time spent with the physician frequently does not have to correlate with real time. Asking patients if there are any issues of importance to them that were not covered or whether they have questions yields considerable benefits. Address all the psychosocial concerns a patient voices, even those that may seem to be of little importance.

VII. Resources

1. For the physician

   Arthritis Care and Research. This bimonthly, peer-reviewed journal of the Association of Rheumatology Health Professionals presents the best research on nonmedical aspects of arthritis and musculoskeletal disease. It is published by the American College of Rheumatology.

   Daltroy LH. Doctor-patient communication in rheumatological disorders. Baillieres Clin Rheumatol 1993;7:221.

   DeVellis BM, Revenson TA, Blalock SJ. Rheumatic disease and women's health. In: Gallant SJ, Keita GP, Royak-Schaler R, eds. Health care for women: psychological, social, and behavioral influences. Washington, DC: American Psychological Association, 1997:333.

   Newman S, et al. (1996). Understanding rheumatoid arthritis. London: Routledge, 1996.

   Newman S, Shipley M, eds. Psychological aspects of rheumatic disease. London: Bailliere Tindall, 1993.

2. For the patient

   Arthritis Today. This monthly magazine, written for people with arthritis and those who take care of them, features articles on many of the issues discussed in this entry. It is published by the Arthritis Foundation.

   The Arthritis Self-Management Program (ASMP) is offered through local chapters of the Arthritis Foundation.

   Lorig K. The arthritis helpbook: a tested self-management program for coping with arthritis and fibromyalgia, 4th ed. Reading, MA: Addison-Wesley, 1995.

Books@Ovid
Copyright 2000 by Lippincott Williams & Wilkins
Stephen A. Paget, M.D., Allan Gibofsky, M.D., J.D. and John F. Beary, III, M.D.
Manual of Rheumatology and Outpatient Orthopedic Disorders

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