Psychosocial Management of Rheumatic Diseases

67 Psychosocial Management of Rheumatic Diseases



W. Neal Roberts, Jr.



Key Points


Treatment of unrecognized depression is probably the psychosocial intervention with the greatest impact and is frequently required.


Matching reading level of patient education material to that of the patient is an important consideration.


Improvement in physician-patient communication can be facilitated by specific actions, such as asking the patient to write down concerns in preparation for each visit or to repeat back what he or she has learned.


Anything that contributes to the physician’s understanding of the patient’s experience can be extremely important.


Any increment in appreciation of the experience of illness from the patient’s point of view does the most to complement the complete range of psychosocial, rehabilitation, medical, and surgical interventions. Perhaps the most important tested psychosocial intervention is recognition of, and conventional treatment of, concomitant depression. Other tested psychosocial interventions—interviewing techniques, improvement in physician-patient communication, and disease-specific patient education efforts—tend to revolve around patient education aimed at the right reading level.1,2



Illness Experience in Rheumatic Disease



Pain


What the illness means to the patient is difficult to grasp. Reading what patients have written about arthritis is not the same as having arthritis; listening and talking and teaching are not the same as having the experience. Physicians who have become patients note in retrospect that the “illness experience” was much more complex than anticipated. The thing that seems to contribute most to making the experience of rheumatic diseases different from that of other medical and surgical conditions is the combination of pain with chronicity.




“Since the pain never goes away, the emotions never go away. So it’s a matter of finding out how to escape from the emotions. That’s what gets to you; it’s like a bloodhound pursuing you. They say, ‘Most patients feel somewhat better in 6 to 8 weeks.’ Six to 8 weeks feels like an eternity, and there’s nothing left to do, nowhere to go.”




—50-year-old woman with rheumatoid arthritis (RA) of 10 years’ duration and treatment with five different disease-modifying antirheumatic drugs.


The average course of rheumatoid arthritis (RA) is about 27 years. The usual psychological defenses wear out. The illness becomes integrated, an unwelcome but integrated part of the individual.




“I used to believe that ‘my arthritis’ was separate from myself. I have come to understand, after 30 years of living with JRA [juvenile RA], that this is no less a part of me than my fingers, my voice. My appreciation for pain, especially that which goes unseen, for recognizing the reality of potential (not everyone can be whatever they want), and for the ability to work at accepting one’s limitations has guided and still guides my perspective. Everything about who I am is wrapped in and around this illness.”




—Woman with juvenile RA since age 6



Additional Effects of Chronicity


Equal to pain for many patients is the loss of control and self-confidence that comes with chronicity.




“But when my symptoms are present, my self-image changes—I am aging, tentative, dependent, tinged with self-pity and regret. I am more willing to accept, rather than strive. In short, my confidence in my life and myself is reduced by how I feel physically. Despite this, a part of me rebels against this lowered self-esteem. It effectively refuses to accept the disease, to admit to not being able to do the things I once did with ease or even skill. These two conflicting personae—the hesitant reflective sick person and the unaccepting person who does what he wants despite how he feels—arise from each other in an uninterrupted, shifting pattern. Self-pity, which is the last stage of my sick person, awakens my healthy person. When he is eventually confronted with a task, however mundane, that symptoms prevent him from doing, the sick person reemerges, and the cycle begins anew.”




—Man with ankylosing spondylitis of 20 years’ duration


Initial events of chronic pain and loss of control and confidence give rise to reactions and adaptations analogous to stages of reactions to acute losses in general—anger, denial, anxiety, and resignation. Management of these reactions and adaptations in the chronic setting may represent new problems of their own from the patient’s point of view, depending particularly on the responses of the patient’s social support system (family, friends, co-workers). Above all, during this series of emotional events, there is the possibility of the existence of treatable depression.




“Any patient with RA who tells you they haven’t ever been depressed is lying. When I see those questionnaires about depression, I just mark something in the middle of the scale. It’s embarrassing to admit how bad you feel.”




—50-year-old registered nurse with RA of 10 years’ duration



Four Landmarks of Psychosocial Adaptation in Rheumatic Diseases


Virtually every rheumatology patient faces four landmark events or processes that routinely require some active management: (1) the initial ambiguity of not getting a diagnosis, (2) getting a diagnosis and the denial that comes with it, (3) repeatedly struggling to understand risks and benefits, and (4) dealing with the impact of the disease on relationships with others. Everyone either receives a diagnosis or does not receive one. If there is no immediate diagnosis, it may help to realize that such ambiguity is a good prognostic factor. If the diagnosis is clinically and serologically obvious, the prognosis may be poor. When a clear diagnosis is made, it entails the patient overcoming denial and facing the fact of having a chronic illness. Subsequently, the risk-benefit decisions about therapies are ongoing. The disease changes; decisions have to be made again.



Family Relationships


Of these four landmark situations that almost every rheumatology patient encounters—facing the diagnosis of a chronic disease or the uncertainty of no diagnosis, understanding repetitive cost-benefit decisions and threats to family relationships—the last uses the most psychological capital. Helpful data in this fourth landmark area are available, but no template approach is known, especially when the patient is a child. In the latter case, the re-establishment of a peer group, through school, camp, or any other setting, is a primary goal (see Chapter 107). Despite the loss of self-confidence and the effects of pain, fatigue, and deformity, individuals with RA have the same divorce rate as the general population. RA patients have fivefold less remarriage if divorced, however.3 The rate of progression of disability in married patients is substantially less than for patients who are unmarried.4 Healthy husbands of wives with RA are affected by the realization of the vulnerability of their own health.5 Marriage increases social support and is a favorable psychosocial variable. RA is experienced in an interpersonal context that can be hard to understand. In couples, if the woman has RA that she perceives as severe, she is helped by congruent beliefs in the spouse. However, if the wife’s emotional response to the RA is high, she is helped by fewer congruent emotions on the part of the husband.6 Childhood and adolescence are particularly unfortunate times to encounter rheumatic disease.7


The physician and the health care system can enable social support to some degree. From studies in systemic lupus erythematosus (SLE), it seems that such enabling effort has the greatest effect among patients who already have strong families, higher incomes, and low disease activity.8



Fatigue


Fatigue in rheumatic diseases seems to be a complex admixture of effects of circulating cytokines presumably mediated by binding to receptors within the periaqueductal gray matter (reticular activating system) of the brain stem, deconditioning, and depression. These factors appear in differing proportions in different diseases. Fatigue is the most common chief complaint of patients with SLE.9 For patients with RA, fatigue is prevalent,10 correlated with depression when that occurs,11 and is the focus of elaborate coping strategies.12 The pathophysiology of chronic widespread pain, despite the lack of obvious inflammation clinically, includes a contribution from cytokine-related fatigue. Patients with chronic widespread pain have reduced levels of anti-inflammatory cytokines interleukin-4 and interleukin-10.13 The rapid time course of the dramatic response of RA fatigue to tumor necrosis factor blockade—less than 1 week in some patients—shows that in many RA patients, fatigue must be due to circulating cytokines directly, rather than to deconditioning and psychological factors, which would not be expected to improve so rapidly.


In these patients, an anti–tumor necrosis factor agent essentially turns RA fatigue into SLE fatigue, which apparently is predominantly due to deconditioning and psychological factors. Maximum oxygen consumption for patients with RA is comparable with that of patients with SLE (slightly >50%). In contrast to RA, in SLE there is no association between fatigue and disease activity, or markers of inflammation. Unless cytokines are acting locally within the central nervous system with no concentration in serum, psychosocial factors may be a predominant cause of lupus fatigue.14 This mechanistic explanation begs the question of whether or not depression in SLE might be due to tonically elevated (or decreased) cytokines that do not vary much with disease activities. Transforming growth factor-β is an example of the latter type of cytokine elevation in SLE.


Another key reason for fatigue is treatable deconditioning. When 93 patients with SLE were compared with 44 sedentary controls, the patients were about 20% worse off with regard to muscular strength, forced expiratory volume, and maximum oxygen consumption. A smaller interventional study of exercise physiology preceded this one and found the same baseline.15 Patients were selected or pretreated to suppress SLE disease activity and underwent 8 weeks of aerobic conditioning, which was successful in reducing their fatigue by about half. A stepwise regression model explaining 37% of variation in SLE fatigue featured abnormal illness-related behaviors, greater age, greater degree of helplessness, and lack of health insurance as potentially responsible psychosocial variables.9



Depression


Diagnosable psychiatric disorders occur no more frequently in patients with rheumatic diseases than in patients with any other chronic disease. Two exceptions stand out statistically. First, patients with SLE have cognitive deficits, particularly as related to learning new things. Mild cognitive deficits, such as word finding difficulty,16 are prominent. Second, patients with widespread, nonarticular, axial aching have more diagnosable psychiatric illness—usually depression or anxiety—and are more likely to somaticize. Patients across the spectrum of those usually seen in office practice rheumatology were compared in an attempt to map out the relationship between pain, disability, and abnormal psychology across diagnostic groups.17 The highest pain scores and the greatest psychological distress were reported by patients with axial disorders such as fibromyalgia, back pain, and neck pain. Patients with serious peripheral joint disease from RA had the most disability but the least pain and the most normal psychological test scores. As a rule, patients with RA psychologically adapt over time and usually are as well adjusted and productive as their anatomy allows.18



Rheumatoid Arthritis


Most patients with moderately severe RA have been depressed. In a preliminary review of veterans’ diagnoses (n = 8706 patients with RA), depression was more prevalent in RA (odds ratio, 1.48), more so in women and African-Americans, and less in older patients. Patients are resilient, however, and they adapt. Even the distress accompanying chronic joint pain in RA, described earlier as the “illness experience,” fails to lead to sustained, treatable clinical depression most of the time. In RA, depression is not more common than among other rheumatology office patients, and pain causes psychological distress rather than the other way around.19 To an extent, the mental health aspect of RA may run an unexpectedly independent course. In one recent trial of a high-value (biologic) intervention, the mental health scale on the Short Form (SF)-36 was the outcome least correlated with the Disease Activity Score (DAS)28 and the American College of Rheumatology 20% response criteria (ACR20), and the pain score was the best correlated.20 However, the mind-body dichotomy is not a rigid Cartesian one in RA. Circulating cytokines can exacerbate depression, and interleukin (IL)-6 might be more important than tumor necrosis factor (TNF) or IL-1 in this regard.21 It remains possible, although unproven, that psychological stress could exacerbate rheumatoid arthritis via hormonal effects upon neuronal transmission.22 Conversely, a systematic review of 27 different trials of psychological interventions for RA concluded that these interventions do increase physical activity levels, which at least has the potential to favorably alter structure.23



Knee Osteoarthritis


Self-reported knee pain in the United States has the highest prevalence among elderly individuals and non-Hispanic black women.24 Only younger and less educated patients presenting with knee osteoarthritis are more likely to be depressed, however.25 Multiple regression analysis of a study of a mixed Asian population in Singapore revealed numerous independent variables associated with better outcome—some biologic, some fixed psychosocial, and some potentially modifiable. Among the best functioning patients with knee osteoarthritis were not only patients with less pain and less radiographic severity, but also patients with better education and less feeling of helplessness (“learned helplessness”).



Chronic Widespread Pain, Fibromyalgia, and Low Back Pain


Overall, population-based studies show patients with chronic, nonarticular, axial aching rheumatic syndromes to be the group most likely to have an underlying psychiatric diagnosis. It is usually a mood disorder, such as depression or anxiety. Somatization is an important causal factor, at least for chronic widespread pain ascertained at the community level. Arguably, fibromyalgia and chronic widespread pain are physiologically distinct. These conditions nonetheless form part of the same differential diagnostic group of nonarticular, axial aching and may overlap in the survey or population-based studies most generalizable to office practice.


Chronic widespread pain among unselected general populations is associated with a 17% incidence of a psychiatric diagnosis in Australia26; one-quarter of a community sample of similar patients in Manchester, United Kingdom, had a psychiatric diagnosis.27 In the Manchester group, the odds ratio for having a psychiatric illness if accompanying self-reported chronic widespread pain was 4.9 (95% confidence interval, 2.6 to 9.5). In the Australian phone survey (n = 17,545), 18% of the population had widespread chronic pain, which interfered with the daily activity of two-thirds. Psychosocial markers statistically associated with widespread chronic pain included less education, less income, lack of health insurance, and unemployment and disability payments. The same strong ties to psychosocial factors distinguish low back pain manifesting as part of chronic widespread pain from low back pain by itself. Finally, in prospective studies, patients initially without generalized axial aching, but who somaticize, have increased risk of developing chronic widespread pain later.



Disability, Employment, and Economics


Health-related quality of life is significantly associated with paid work even when disease severity and demographics are controlled for, and even when societal safety nets are robust.28 Individual patients with RA lose 30% of their work capacity. Societal costs of RA in economic and employment terms have now been estimated accurately at $19.3 billion in 2005 dollars, with the burden divided as follows between four main stakeholder groups: patients 28%; employers 33%; and families and government nearly equal at about 20% each. Less firm estimates of quality of life deterioration and mortality double the total cost.29 A bit less than half of the cost of a biologic can be paid for by the indirect cost gain from increased labor force participation.30 Psychosocial factors affect the course of rheumatic diseases, especially with regard to employment and disability, against the background of this societal, economic context.


The effects of psychological and social factors on the presentation of many important diseases have been studied. These illnesses include the most statistically and economically important of the rheumatic diseases—osteoarthritis, RA, and low back pain—and SLE and fibromyalgia, as partially described earlier. Likewise, the effects of these diseases upon employment have been described. For Germans nationwide, ages 20 to 59, who had more than a decade of disease duration, the rank order of risk of unemployment from various rheumatic diseases was, from highest to lowest, granulomatosis with polyangiitis (formerly Wegener’s granulomatosis), rheumatoid arthritis, scleroderma, lupus, psoriatic arthritis, and ankylosing spondylitis. The largest differences were noted between better-off psoriatic and spondyloarthopathy groups and the others.31 In Canada, the long-term work disability rate in RA after 10 years of disease duration is somewhere between 32% and 50%.27 Whether early interventions to prevent unemployment are worth the expense depends on accounting assumptions about how closely interests of the paying agency are aligned with those of patients receiving the intervention.32 In RA, failure to respond within the first 6 months at least to the level of an ACR20 predicts job loss even when a large response (ACR50) comes later.33 It is interesting to speculate on how much of this disproportionate impact of the first 6 months upon employment is due to downsteam effects of biologic events unique to the first 6 months of clinical disease versus how much is due to early psychological adaptations.


After severity of RA, the top two determinants of RA work disability are the physical difficulty of the job and the educational level of the patient.34 Beyond these first three powerful factors, some psychological factors are important. These include most prominently a feeling of helplessness and employer support.35 One large difference has been noted between patients’ and doctors’ perceptions about continuation of employment with RA. This difference involves employer support, which providers tend to underweigh compared with the importance that patients ascribe to it.36 Low employer support could be viewed as a modifiable risk factor and therefore a target of psychosocial intervention.



Disability Insurance


In understanding disability and communicating that understanding to patients, four different funds of knowledge are of special value: (1) detailed knowledge of the mechanics and criteria of Social Security disability insurance (SSDI) in the United States,37 (2) cross-cultural comparisons, (3) an appreciation of the major criticism raised in critique of the logical assumptions underlying the current system,38 and (4) knowledge of research results showing what determines disability in specific diseases. Achieving reasonable expectations on the part of the patient and less frustration for the provider and the patient are two attainable goals of disability management.


The mechanics of the U.S. SSDI system vary from state to state but are simple and easily summarized. Reforms have reduced the number of steps between the initial application and the administrative law judge level. At this level, as an example, the court is empowered to ask and answer the question of whether a skin lesion, joint symptoms, and cognitive deficits in a patient with SLE are equivalent in severity to a stroke or renal failure, the actual default criteria. The waiting period before final adjudication of the disability claim is now shorter but still varies from state to state in the United States. Opportunities for the applicant to introduce new medical facts after the initial application is submitted are diminishing, however. Therefore, completeness of data at the initial application has greater importance. The appeal level in the streamlined version of the SSDI process reviews the correctness of the decision but allows few new medical data to enter the picture during the review. The patient has less opportunity to buttress medical weak points in his or her case in response to feedback from the system. The algorithm for advocacy therefore encompasses three elements, in order: (1) accrue the greatest quantity of objective data as possible, whether or not they are clinically necessary, being especially careful to document radiographic changes in patients with RA or other inflammatory arthritis; (2) write details about limits in daily and work activities in the notes before beginning correspondence about disability; and (3) begin the application using an attorney with steps 1 and 2 firmly in place.


An algorithm for employer-provided private disability insurance in the United States might be entirely different. This difference arises from answers to the questions of who pays what when the patient is on light duty, part-time accommodation, short-term disability, or long-term disability. Some employers prefer to push ambiguous cases onto a long-term disability account, which is insured, rather than carrying a less than 100% effective employee in a current budget. Such an assignment to long-term disability insurance (which might eventually run out) may impede the patient’s ultimate return to full-time work at the same firm, however.


Cross-cultural comparisons offer little help to individual patients experiencing economic losses, which constitute the indirect costs of rheumatic diseases. Between 1983 (Netherlands) and 1996 (Australia), many countries passed a milestone, however, at which the absolute numbers of individuals drawing disability payments surpassed the official number of unemployed for the first time. The United States and the United Kingdom passed this marker around 1993. Over the three years 2000 to 2003, 1.8 million people claimed work disability benefits in the United States. Economists speculate that these numbers were then large enough to affect macroeconomic statistics on the workforce participation rate.39 Economists also argue that political incentives to record low unemployment numbers and the personal incentives of more payments for disability than for unemployment favor continuation of this trend for as long as it is fiscally sustainable.


In the long term, this may mean that disability insurance will become more like unemployment insurance. Such a change would have to involve acknowledgment that disability and unemployment are related aspects of a single work problem, significantly greater incentives for employers to hire and promote disabled individuals, and new incentives for patients to avoid disability rolls in favor of remaining in the workforce. Regardless of the future, and of an individual patient’s struggle to salvage income levels in the face of illness, insight into the relationship between unemployment and disability can help maintain a perspective without which the disability issue has great potential to split the therapeutic alliance between physician and patient.


The major philosophical underpinning of the current SSDI system is the assumption that the amount of disease determines the amount of work disability.38 A necessary corollary is that the amount of disease is objectively quantifiable. From the rheumatologic standpoint, two things are wrong. First, pain is self-reported and, by definition, not objectively quantifiable. Second, and more important, psychosocial factors are stronger determinants of disability than disease factors in many cases. Examples of the latter situation have been studied in a range of illnesses as outlined subsequently.


In one multivariate analysis of knee osteoarthritis only, age, female sex, obesity, and severity of knee pain maintained independent effects (P < .0009). All of these factors, individually and together, had greater influence on health assessment questionnaire–determined disability than did radiographic severity.40 For 180 English patients with low back pain,41 the best predictor of some pain persisting at 1 year of follow-up was concomitant widespread pain (odds ratio, 6.4). Other factors, from the most clinical, such as radicular pain, to the most psychological, such as job dissatisfaction, all showed equal odds ratios of about 3. Lack of influence over the work environment and poor social relations with co-workers42 are specific job-related factors influencing work disability from back pain.


Whiplash injury was definitively studied43 in an experiment of nature when Saskatchewan switched from tort to no-fault auto insurance in 1995, abruptly disallowing claims for pain and suffering. Analysis of 7462 claims showed that the number and prognosis of neck injuries improved by about 30%. Depression influenced the duration of neck pain. The relative parity of psychosocial factors with clinical disease factors seen in the spine seems to be maintained in analyses of more peripheral musculoskeletal problems, such as forearm pain.44 Patients with RA and patients with fibromyalgia report equal disability on a self-report scale, but patients with RA report less pain.


Labeling a patient with widespread pain or nonarticular axial aching as having fibromyalgia probably does not increase work impairment.45 Disability awards for RA are heavily influenced by objective radiographic data—erosions and narrowing. Age, pain score, and depressed mood secondary to physical disability determine overall disability in RA, however, from the patient’s point of view.46 Fatigue plays a role in RA disability in that fatigue, more disability, more anxiety, and less social support all are correlated with one another in RA.47 The odds are 2 : 1 to 3 : 1 against return to work for a patient with RA who stops working. SSDI, older age, and less education decrease the odds.48 In SLE multivariate models for patients at university centers, predictors of early disability in the first 3 years included low educational level (P = .0004), a physical job (P = .0028), and disease activity at diagnosis (P = .0078). Cumulative organ damage and disease duration, race, and gender did not predict stopping work.49


One randomized, unblinded trial of 13,077 Madrid50 workers with temporary work disability in 1998 and 1999 showed a significant effect of an inexpensive, organized program. This program cut the incidence of long-term disability by half and saved about $5 million using more frequent visits and patient education early on.

< div class='tao-gold-member'>

Only gold members can continue reading. Log In or Register to continue

Related posts:

Introduction to Physical Medicine, Physical Therapy, and Rehabilitation Experimental Models for Rheumatoid Arthritis Immunosuppressive Drugs Hemophilic Arthropathy Antinuclear Antibodies Enteropathic Arthritis

Stay updated, free articles. Join our Telegram channel
Tags:
Jul 3, 2016 | Posted by in RHEUMATOLOGY | Comments Off on Psychosocial Management of Rheumatic Diseases

Full access? Get Clinical Tree
Get Clinical Tree app for offline access