The last two decades have witnessed an expansion in research on the development and application of behavioral interventions for chronic illness. This research has resulted from an appreciation of the significance and relevance of the biopsychosocial model in understanding the adjustment of patients to medical problems that disrupt quality of life and create functional limitations. Over this same time period, the fields of health psychology and behavioral medicine have fostered the promotion of interdisciplinary methodologies for examining how behavioral, psychological, and social factors can affect health promotion, disease prevention, and adaptational mechanisms in persons with a range of illnesses such as cancer, cardiovascular disease, diabetes, and arthritis. Creative and effective nonpharmacologic treatment approaches have emerged from a broadening of the paradigm for understanding the adjustment process in chronic disease. A wider range of alternatives for managing chronic disease currently exists than has ever existed before, infusing hope and optimism in the delivery of health care services for patients and their families.
It is within this broader context that health care professionals should conceptualize the care of patients with arthritis. A large body of research documents the contribution of psychosocial variables to clinical outcomes in arthritis as well as the efficacy of behavioral treatment strategies that have major relevance for enhancing clinical care. However, it is unclear if such research is affecting the clinical care of arthritis patients. There is also a lack of information regarding the types of obstacles that may be interfering with optimal service delivery. It is possible that, in spite of illustrative research findings, rheumatologists and other arthritis health professionals may not be aware of the value and importance of behavioral interventions in their clinical decision making and patient interactions. Alternatively, clinical settings may lack the capacity to provide optimal biopsychosocial care, even when professionals embrace its value and practical importance. In this chapter, I present support for the empirical and theoretical justification for behavioral interventions, analyze findings on the efficacy of behavioral approaches, and describe future challenges in addressing how behavioral interventions can become more relevant to arthritis patient care.
THE NEED FOR BEHAVIORAL INTERVENTIONS
Although there are a multitude of variables that support the application of behavioral interventions for arthritis, three sets of factors are paramount. First, arthritis often has a significant, deleterious impact on patients’ quality of life, emotional functioning, and financial well-being. These problems frequently persist despite efficacious medical treatment, creating frustration for patients and health care providers alike. Second, very high rates of psychiatric comorbidity have been found in persons with arthritis, and myriad psychosocial factors have been shown to affect the long-term adjustment of patients, supporting the need for broader, integrative treatment models and approaches. Third, behavioral interventions recognize the value of patient self-management and empowerment, which are essential to effective functioning in the face of chronic symptoms and illness-related obstacles. Behavioral interventions emphasize the importance of skills of management that are central to coping with difficult symptoms and preventing health risk, changing the way that patients relate to their health care team and reducing their dependency on biomedical treatment as the only means of management. Behavioral interventions promote a collaborative model of care in which patients participate actively with their physicians in managing their arthritis and in clinical decision-making.
THE FUNCTIONAL AND ECONOMIC IMPACT OF ARTHRITIS
Despite ongoing advances in the development of drugs that reduce inflammation and disease activity, arthritis continues to disrupt quality of life and lead to significant disability. The disability associated with arthritis has been the subject of research for many years and has led to the development of several different measures that capture individual variation in functional adaptation. Although significant variability between patients exists in such areas as emotional, social, occupation, and physical functioning, the overall impact of arthritis is severe and pervasive. Unfortunately, medical approaches to managing disability are often ineffective because they are not equipped to deal with the range of factors (e.g., socioeconomic, environmental, social, psychological) that affect disability in individual cases. Other approaches are necessary to fill this void.
A recent study by Verbrugge and Juarez has highlighted the extent and nature of arthritis disability. Using data collected as part of the 1994 and 1995 National Health Interview Surveys, the authors compared persons with arthritis (n = 2469) with persons with other forms of disability (n = 14,592) on their responses to questions on personal care (i.e., activities of daily living [ADLs]), household management (i.e., instrumental activities of daily living [IADLs]), physical limitations (PLIM), home, and work. Individuals with arthritis had more disabilities of all types than individuals with other disabilities and experienced more pain and fatigue in carrying out ADLs, IADLs, and PLIM. The study found that differences in physical limitations, the “building blocks” for roles and activities, were the most pronounced. Individuals with arthritis also traveled less and encountered more transportation barriers than their counterparts. The authors note that a distinctive aspect of arthritis disability is its significant social breadth, causing difficulties for patients in leaving their homes for social activities, attending social events, and experiencing pleasure with others.
PSYCHIATRIC COMORBIDITY AND PSYCHOSOCIAL FACTORS
In addition to functional limitations and impairment in quality of life, having arthritis creates an enormous financial burden for many patients and families. Arthritis ranks high among chronic diseases nationally and worldwide in medical costs, lost income, unemployment, and underemployment. Recent findings from Yelin et al. confirm the economic impact of arthritis. Based on data from a national probability sample of the Medical Expenditures Panel Survey in 2003, the authors found that mean patient medical expenditures were $6978, yielding a total of $321.8 billion, and that patients earned $3613 less than persons with no chronic conditions. They also reported that medical expenditures and earnings losses increased from 1997 to 2003, attributing the rise primarily to a higher prevalence of arthritis found in the 2003 sample. Augmenting the financial impact of arthritis are indirect costs resulting from lost productivity, sick days, and early retirement, which are more difficult to quantify and are often underestimated. The emotional impact of such losses and the disruption to family stability due to financial stressors are common, additional burdens.
The psychological impact of arthritis has been known for many years. From data collected as part of a National Institute of Mental Health (NIMH) catchment area study, Wells and colleagues reported a lifetime prevalence rate of psychiatric disorders of 63.6% in persons with arthritis, which is higher than in persons with other medical conditions such as cancer, diabetes, heart disease, and chronic obstructive pulmonary disease. Following this landmark epidemiologic study, investigators have conducted research on the role and prevalence of depression in arthritis. Estimates of the prevalence of depression in arthritis range from 15% to 40%, depending on the diagnostic criteria, sampling procedures, and measurement approaches adopted. These prevalence rates are very high compared with rates of 5% to 8% that are found in samples of individuals without chronic medical problems. However, despite the fact that depression is very common, there is evidence that rheumatologists seldom query patients about their mood during routine office visits. A recent study by Sleath and coworkers, in which more than 200 doctor-patient interactions were audiotaped in several clinics in North Carolina, found that depression was addressed in only 11% of clinical transactions and that in all cases, patients presented their mood problems to their physicians. Physicians did not initiate discussions about depression with patients in any of the interactions. Unfortunately, the reasons for this surprising finding were not examined in this study, and we do not know how typical this problem is across rheumatology practices in other regions. Nevertheless, it is clear that if depression is not explicitly addressed during rheumatology visits, it will not be effectively managed. Unmanaged depression, in turn, may compromise the efficacy of biomedical treatment, cause significance distress, and interfere with patients’ quality of life. Health services research that focuses on the variables that either facilitate or inhibit the detection of depression in rheumatology practice is both warranted and critical.
A plethora of research evidence conducted over the past 25 years has substantiated the important contribution of a variety of psychosocial factors to health outcomes in such conditions as rheumatoid arthritis, fibromyalgia, and systemic lupus erythematosus. The breadth of this work is beyond the scope of this chapter and has been carefully reviewed elsewhere. Illness beliefs such as helplessness (e.g., lacking control over the illness) and catastrophizing (e.g., thinking that the worst will happen), pain coping strategies (passive and active coping), stress, and social support have all been shown to directly affect outcomes such as pain, mood, and disability independently of disease activity and provision of standard medical care. In some instances, these variables also may serve as mediators of the relationship between biomedical factors and clinical outcomes. Helplessness, for example, has been shown to mediate the effects of arthritis pain on mood. In other instances, these factors may serve as moderators of the effects of disease activity either by dampening or exacerbating its effects. For example, pain coping strategies and social support may buffer the effects of pain or stress on health outcomes such as depression and disability. When pain or stress is high, effective coping or adequate social support may protect the patient. Table 29-1 presents an outline of these factors and their importance and relevance to rheumatology care.
|Illness beliefs (e.g., helplessness, catastrophizing)||Mediator of effects of pain depression, anxiety, coping|
|Pain coping||Pain, depression, disability|
|Resilient coping||Positive mood, less pain|
|Social support||Enhanced mood, adaptive coping|
|Stress||Worsens pain, disease activity|
|Mood disturbance||Worsens pain, disability, significant disease activity|
These variables illustrate the importance of adopting the biopsychosocial model in evaluating the adjustment of arthritis patients. These variables affect outcomes in a similar manner across many arthritic diseases and account for a significant amount of variability in such clinical outcomes as pain, disability, mood, and quality of life. Moreover, their effects are robust, clinically significant, and provide added rationale for the use of behavioral strategies. Their relevance to patient care in rheumatology practice deserves careful attention and ongoing assessment. Screening and evaluation procedures can be established in clinical settings to identify problems in psychosocial functioning that can yield major benefits to rheumatologists and patients alike by highlighting the need for complementary behavioral or psychological interventions. Behavioral medicine specialists and other members of the health care team can then intervene to provide ongoing care for psychological issues or disease management.
THE EVOLUTION OF BEHAVIORAL INTERVENTIONS FOR ARTHRITIS
The development of the interdisciplinary field of behavioral medicine in the late 1970s and early 1980s provided the foundation for researchers and clinical scientists to devise behavioral approaches to assist patients in managing the vicissitudes of chronic illness and promote enhanced quality of life. Many leaders in the field of behavioral medicine were clinical psychologists trained primarily in the rigors of behavior therapy and social learning theory, which formed the major groundwork for many contemporary approaches to chronic illness management. At around the same time, but independently of the field of behavioral medicine, psychoeducational programs began to emerge that fostered greater awareness in patients about the importance of self-management and how to work with the health care system in getting the most out of their medical care. The development of the Arthritis Self-Help Program (ASMP) by Kate Lorig and colleagues at Stanford University played a crucial role in promoting this philosophy and contributing to the public health significance of a holistic, integrative approach to arthritis care. Research on the ASMP has substantiated its efficacy on central clinical outcomes such as pain, health care use, and adaptive health behaviors.
The origins of behavioral interventions for arthritis can be traced to the growth of social learning theory and the development of effective behavioral strategies for managing depression, phobias, and other psychiatric disorders. A basic tenet of social learning approaches is that learning processes are fundamental to managing these disorders, including the control of difficult symptoms, the prevention of disability, and the enhancement of quality of life. Because many patients with arthritis have psychiatric comorbidities and problems of this nature, behavioral medicine specialists realized that many of the same models and strategies could apply to managing arthritis. The use of behavioral strategies for managing depression and anxiety, for example, seemed like an appropriate fit for patients with arthritis.
In addition to the broader evolution of social learning theory, specific developments in the treatment and management of patients with chronic pain contributed to the application of behavioral principles and strategies for arthritis. The opportunity for the environment to affect pain increases as patients adjust to the demands of having arthritis over time and develop strategies for managing pain and disability. Operant learning approaches have shown that reports of pain and behavioral limitations in chronic pain patients could be altered by contingencies of reinforcement and extinction. Reports of pain and disability, for example, may continue if attention from others or disability payments follow pain complaints or avoidance of work. Furthermore, pain and disability may come under different contingencies, leading to circumstances in which patients may report little pain but still have considerable behavioral impairment. Despite effective biomedical treatment for arthritis pain, patients may encounter substantial pain-related problems if they receive reinforcement for maladaptive pain coping, poor functional outcomes, or occupying the sick role.
The advent of cognitive behavior therapy, shortly after the operant learning movement, showed that patients’ attention and beliefs about their symptoms could affect emotional outcomes and behaviors. The cognitive behavior therapy approach provided a complementary intervention to operant techniques to managing chronic pain by emphasizing the importance of modifying attentional processes and beliefs that exacerbated reports of pain severity, depression, and anxiety. As research evidence on the role of helplessness and pain catastrophizing on adverse outcomes in arthritis patients mounted, the salience of cognitive behavior therapy strategies for managing arthritis pain correspondingly increased. Cognitive behavior therapy techniques such as distraction, imagery, and cognitive restructuring for dysfunctional beliefs were developed and subsequently applied for managing arthritis pain in randomized clinical trials. A substantial body of evidence has accumulated over the last 20 years, documenting the efficacy and role of such techniques in arthritis care.
CONCEPTUALIZING THE ROLE OF BEHAVIORAL INTERVENTIONS IN ARTHRITIS
Figure 29-1 illustrates three different ways of conceptualizing the importance of behavioral interventions in chronic illness and arthritis care. In the first scenario, having a chronic illness creates risk for psychological distress and potential problems with depression, anxiety, and diminished quality of life. The burdens of arthritis, including pain and disability, may lead to psychological distress, adding to the complexity of patient management. The role of behavioral interventions is to reduce disease-related burdens, enhance quality of life, and contribute to greater psychological well-being in patients. The second scenario illustrates the potential role of psychological factors in influencing the disease course in arthritis. For example, depression may interfere with medical compliance and increase inflammation that, in turn, may lead to poor disease control and a worsening in symptoms such as pain and swelling. Behavioral interventions in this framework may be implemented to reduce depression in order to prevent or abate disease progression. The third scenario, a combination of the other two, illustrates a cyclical, recursive process that is typical of chronic illnesses such as arthritis. In this framework, chronic illness leads to psychological dysfunction, which then can aggravate the underlying disease. Behavioral interventions have a dual function in this scenario–to mitigate disease-related burdens on psychological functioning, and to enhance psychological functioning as a means of promoting better disease control and optimal health status.
The first scenario has dominated the major focus of clinical trials that have evaluated behavioral interventions for arthritis in that they have been principally designed to reduce the adverse effects of pain and enhance psychosocial functioning in patients. The role of behavioral interventions has been to complement state-of-the-art medical care aimed at controlling inflammation and disease progression. Importantly, this is a high clinical standard for behavioral interventions, as they must demonstrate an additive effect by contributing to efficacy over and above the role of powerful disease-modifying pharmacologic agents. Whether behavioral interventions can affect disease activity in the second scenario is an especially intriguing concept that reflects their potential in reducing inflammation via the hypothalamic pituitary pathway that communicates with the immune system.
Figure 29-2 illustrates a dominant paradigm for understanding psychosocial adjustment to arthritis and the role of behavioral interventions. The horizontal pathway describes elements of the coping process, starting with disease activity, which leads to symptoms and other illness-related stressors. As a result of experiencing symptoms, patients develop beliefs (appraisals) about their severity and controllability. The beliefs, in turn, affect the choice of coping responses to manage the symptoms. Coping responses, depending on their efficacy, can lead to changes in health status such as increases or decreases in pain, depression, disability, or health-related quality of life. The coping process is dynamic and recursive, subject to change in all of its individual elements, and modifiable by the patient. For example, improvement in pain may lead to more adaptive appraisals that reinforce effective coping responses and maintain positive health outcomes. Importantly, the model takes into account environmental factors and individual difference variables that can potentially affect the coping process and outcomes in health status directly.
Behavioral interventions in Figure 29-2 can promote improvement in health status in three major ways. First, they can affect the coping process directly by teaching patients, for example, how to restructure faulty thinking about symptoms or to reduce pain. Second, they can alter environmental factors (e.g., stress) that are having a deleterious effect on the coping process or health outcomes directly. Strategies may be used to enhance social support or attenuate the impact of situational (e.g., interpersonal, work) stressors. Third, interventions may be directed at personality characteristics of patients such as dependency or low self-esteem that affect illness appraisals and/or choice of coping responses. It is important to note that behavioral interventions in the model are not aimed directly at reducing disease activity but are focused instead on the cognitive, emotional, and behavioral sequelae of the disease. In contrast, biomedical interventions focus on the amelioration of disease activity but do not address elements of the coping process. Thus, behavioral and biomedical interventions function in a complementary manner and collectively promote an interdisciplinary, behavioral medicine approach to chronic illness management. Psychologists, allied health professionals, and physicians all have their respective roles in this process. As arthritis professionals and colleagues, they all share in the responsibility for helping patients manage the disease process comprehensively and effectively.