The psychology of rheumatic diseases

The psychology of rheumatic diseases

BaillieÁre's Clinical Rheumatology Vol. 14, No. 4, pp. 773±786, 2000 doi:10.1053/berh.2000.0112, available online at http://www.idealibrary.com on 1...

179KB Sizes 23 Downloads 55 Views

BaillieÁre's Clinical Rheumatology Vol. 14, No. 4, pp. 773±786, 2000

doi:10.1053/berh.2000.0112, available online at http://www.idealibrary.com on

11 The psychology of rheumatic diseases Stanton Newman

DPhil, Dip Psych, AFBPS, C Psychol.

Professor

Kathleen Mulligan

MSc

Research Assistant Unit of Health Psychology, UCL, Department of Psychiatry and Behavioural Sciences, 2nd Floor, Wolfson Building, 48 Riding House Street, London W1N 8AA, UK

Most chronic rheumatological disorders require major psychological adaptation, and levels of psychological distress among those with rheumatological disease have been found to be higher than in the general population. Research suggests that the relationship between disease severity, disablement and psychological well-being is not simple. This chapter highlights the complex nature of this relationship and will indicate, in particular, how psychological factors can impact on patients' perceptions of their symptoms and physical functioning. Psychological concepts that may mediate between the disease and its consequences are also discussed. A range of psychosocial interventions have been developed for individuals with rheumatological disorders. Most have related to rheumatoid arthritis, and although their primary focus has usually been on alleviating pain and improving physical functioning, this chapter examines their impact on psychological well-being. It also discusses a number of methodological issues that need to be addressed in this area of work. Key words: arthritis; psychology; depression; anxiety; interventions; control; self-ecacy; helplessness; social support; coping.

PSYCHOLOGICAL FACTORS IN RHEUMATOLOGICAL DISORDERS Most chronic rheumatological disorders require major psychological adaptation as individuals have to learn to come to terms with a painful, disabling condition that is unpredictable in its course. Psychological research into rheumatological disorders has principally examined how psychological and social factors relate to symptoms, disability and psychological well-being (mainly depression and anxiety). These variables are clearly important, as measures of disease severity and damage are unable accurately to predict the impact of the illness on the individual. This chapter will consider the major psychological outcomes commonly assessed in rheumatological disorders ± depression and anxiety ± as well as disability. Pain will not be speci®cally discussed as it is considered elsewhere (see Chapter 13). A number of the variables that potentially in¯uence the e€ect of rheumatological illness on the individual will then be discussed, and ®nally interventions designed to in¯uence the psychological consequences of rheumatological disorders will be considered. 1521±6942/00/040773+14 $35.00/00

c 2000 Harcourt Publishers Ltd. *

774 S. Newman and K. Mulligan

Mood and disability as a consequence of rheumatological disorders Depression The term `depression' is widely used in the literature. It is, however, important to distinguish between `clinical depression' and a depressed mood. The former is considered to be a condition in which individuals are classi®ed as requiring or not requiring treatment. This approach provides an indication of the number of people who have clinical depression. In contrast, depressed mood is a continuous measure ranging from normal mood through to what would be considered clinical depression. Although the assessment of depression has been subject to much discussion1, its incidence has been found to be higher among those with rheumatological disorders than in the general population. Hawley and Wolfe2 used the Arthritis Impact Measurement Scale (AIMS) and distinguished between probable or possible depression. They reported a level of `probable' depression of 20.4% in rheumatoid arthritis (RA), 16.8% in osteoarthritis (OA) of the knee or hip and 14.2% in OA of the hand. The rate of probable depression in ®bromyalgia was found to be higher, at 29.3%. The rates of `possible' depression were 48.6% in ®bromyalgia, 36.8% in RA, 33.0% in OA of the hip or knee and 28.0% in OA of the hand. Barlow et al3 reported that approximately 30% of patients with ankylosing spondylitis could be at risk of developing clinical depression. Importantly, the rate of depression among those with a rheumatological disorder is similar to that found in individuals with other chronic conditions.1 More interesting questions concern what factors appear to be responsible for the higher level of clinical depression or depressed mood, and how depression a€ects other commonly measured variables in rheumatological disorders. One variable that has been found to be associated with depression is pain4, and one of the diculties has been to establish the direction of causality between these two variables. Although some studies have found that the level of pain appeared to predict subsequent depression5, others6 have reported that depression had more in¯uence over pain than vice versa. The e€ect that depression can have on disability in general has been shown in a study of 11 242 outpatients.7 Disability was found to be greater in those who were depressed than in individuals with other chronic conditions, including arthritis. In a longitudinal study of individuals with RA, McFarlane and Brooks8 found that psychological factors were a better predictor of disability than were traditional measures of disease activity, and that clinically signi®cant depression predicted a higher level of disability. In a study of RA patients, Katz and Yelin9 found that depressed individuals were more impaired than those who were not depressed. Depression therefore appears to be an important in¯uence on disability, and these ®ndings suggest that, in any study of disability, it is important to measure depressed mood and/or clinical depression. That disability is commonly measured by self-report may also be a potential route through which depression may predict disability. People's perceptions of their functional abilities, and therefore their reporting, may be biased by negative mood. The e€ects of depression extend beyond pain and disability to the utilization of health-care resources. In a community sample of people with OA, those receiving medical care for OA were signi®cantly more depressed than those not receiving care.10 Depression was generally also a better predictor of receiving medical care than were symptoms. Katz and Yelin9 also found that patients with a raised depression score reported a higher number of physician visits and hospitalizations over a 5-year period than those patients whose depression score fell within normal limits. Most studies of depression in rheumatological disorders have focused on current psychological state and have not considered the in¯uence of a history of depression.

Psychology of rheumatic diseases 775

Fi®eld et al11 assessed depression using both a diagnostic interview and a depression questionnaire and found that individuals with RA who had a history of major depression and a high current level of dysphoria (low mood) reported the greatest pain, fatigue and disability when compared with those with high dysphoria who did not have a history of depression and those reporting a low level of dysphoria. Anxiety Another area of mood that has been found to be a€ected in rheumatological conditions is anxiety. Pincus et al12, using the Hospital Anxiety and Depression Scale, found that RA patients were four times more likely to be anxious than controls. The impact of anxiety has, however, received far less attention than depression13, and further research is required to explore the relationship between anxiety and disability. The issue is complicated by the fact that it is common for an increased level of depressed mood to be associated with a raised level of anxiety. Disability The ®ndings reported above highlight the importance of taking into account psychological factors when considering the assessment of disability. These studies show that measures of disability are not independent of psychological and social factors. Selfreported functional performance is related to other factors such as mental health and health perceptions14, which are in turn related to demographic factors such as education.15 Variables that may in¯uence the impact of rheumatological illness on the individual Perceptions of control The individual's perception of the degree of control he or she has over the illness has been found to be an important predictor of psychological well-being in rheumatological disorders. Three related constructs have been widely used to assess the perception of control in rheumatological disorders: learned helplessness, locus of control and selfecacy. Learned helplessness. The unpredictable nature of rheumatological disorders and, in general, the limitations on obtaining satisfactory symptom relief can lead to feelings of helplessness. These have in turn been found to be related to pain, as well as to the level of depression. Stein et al reported associations between changes in perceived helplessness and changes in pain, depression and global health status.16,17 Importantly, the association between disease severity and depression in people with RA appears to be mediated by perceived helplessness.18 In addition, in the context of a longitudinal study, helplessness and pain were found to mediate between disease activity and both physical and psychological functioning.19 Locus of control. Health locus of control concerns people's beliefs about the extent to which their health is controlled by their own behaviour (an internal or personal locus of control), by chance or by `powerful others' such as health professionals. Health locus of control may, for example, lead patients who believe that their health is controlled by

776 S. Newman and K. Mulligan

powerful others to be less likely to take an active role in the management of their condition and rely more on others. Alternatively, those who believe that they are responsible for their health may take more responsibility for their care but may experience distress when they encounter situations that they cannot control. One study suggests that it is important to distinguish between control over symptoms and treatment. A‚eck et al20 reported that high personal control over treatment was associated with greater psychological well-being, while perceptions of greater control over symptoms by health-care professionals were associated with poorer psychological well-being. Those with more severe disease who perceived a greater personal control over the course of their illness exhibited greater mood disturbance. Tennen et al21 reported that those with a high internal locus of control over pain at the beginning of a study reported less pain, but when those who believed that they could control their pain experienced a higher level of pain than expected, they became distressed. These ®ndings indicate the importance of perceptions of control but also suggest that high personal or internal control can lead to diculty when expectations of control are not realized. Self-ecacy. Self-ecacy theory was developed by Bandura22 and refers to the belief in one's ability to control speci®c challenges. It di€ers from the constructs of helplessness and locus of control in that it refers to the belief in one's ability to perform speci®c behaviours to achieve particular outcomes. Thus an individual's level of self-ecacy may di€er for di€erent behaviours. Self-ecacy beliefs may be important in chronic conditions as they may in¯uence patients' coping attempts and their sense of well-being. Signi®cant relationships have been found between self-ecacy and subsequent pain and disability23,24 and depression24 in individuals with rheumatological disorders. Riemsma et al25, in a study of 229 RA patients, found that patients with high selfecacy beliefs reported less fatigue. Buescher et al26 found that, after controlling for disease activity, higher self-ecacy was associated with less pain behaviour in patients with RA, although the amount of variance explained was small, at 5±7%. Self-ecacy has also been found to predict a successful outcome in psychological interventions. In a study of a 6-week training intervention for ®bromyalgia, Buckelew et al27 found that higher pre-treatment self-ecacy predicted a higher level of physical activity post-treatment, and improvements in self-ecacy were associated with better post-treatment outcomes for disease severity, pain and tender point index. Smarr et al28 examined participants in a stress management intervention and found that changes in self-ecacy were related to changes in depression, pain reporting, a€ect and walking speed. The above ®ndings con®rm the importance and widespread impact of feelings of self-ecacy. Coping Coping refers to individuals' attempts to limit the impact of a stressor such as rheumatological disease. Studies have shown that the strategies people use to cope with their condition in¯uence the e€ect it has on their well-being. A consistent ®nding is that the use of passive or avoidant strategies is negatively related to psychological well-being and other factors such as disability, while the use of active strategies is positively related. Newman et al29, for example, investigated the coping strategies of 158 people with RA and found that the group reporting less pain, sti€ness and disability, and better psychological well-being, tended to use more open and active coping strategies.

Psychology of rheumatic diseases 777

The impact of pain on depression has also been found to be greater in those who use passive coping strategies.30 Keefe et al31 found that a high score on the catastrophizing scale of the Coping Strategies Questionnaire was associated with greater disability and poorer psychological well-being assessed 6 months later. A‚eck et al32 found that those who made more overall coping e€orts were more likely to report a reduced level of pain over time. More recently, Scharloo et al33 reported that, in people with RA, more passive coping was associated with greater disability and anxiety. The utilization of coping strategies is, however, complex, particularly because individuals appear to use coping strategies even when they recognize that they may not be e€ective.34 The use of coping strategies may have as much to do with habit as with deliberate choice. Social support `Social support' is a term used to describe the practical assistance and/or emotional support that is provided by others in the social environment. Support may be received from friends, family, support groups and health-care professionals. Several studies have shown that support does have an impact on the well-being of people with rheumatological disorders. For example, RA patients who were married were found to show a slower disease progression than those without partners.35 Newman et al36, in a study of individuals with RA, found that those with more social contacts had a lower level of depression. Di€erent types of support may lead to di€erent health outcomes. Taal et al37, for example, found that practical support but not emotional support was positively related to improved health status. The number of contacts may, however, be less important than the perception of the adequacy of the support available. This is an important distinction between the structural de®nitions of social support that refer to, for example, the number of contacts people have or make, and the subjective perceptions of the adequacy of the support that is received. The latter has in general been found to be more important in a range of di€erent areas.38 In RA, patients with greater perceived social support have been found to report less depression39 and better psychological adjustment.40 If relationships are not perceived as supportive, however, they can have a negative e€ect on coping. Patients with critical spouses engaged in more wishful thinking and showed poorer psychological well-being41, and spousal criticism has been shown to lead to anxiety in men and depression and anxiety in women.42 SOME METHODOLOGICAL ISSUES IN THE ASSESSMENT OF PSYCHOLOGICAL FACTORS IN RHEUMATOLOGICAL CONDITIONS The studies outlined above highlight the importance of psychological factors in rheumatological disorders. It would, however, be incorrect to assume that the di€erent rheumatological conditions are necessarily similar in psychological consequences and in the role played by intervening variables such as coping. Most studies have been conducted using individuals with RA, and further research in other rheumatological disorders is required to establish the di€erences and similarities between the di€erent rheumatological conditions. The research has also tended to be somewhat selective in the psychological factors that have been examined. In mood, the emphasis has been mostly on depression, while

778 S. Newman and K. Mulligan

anxiety has been largely ignored, in spite of the high level reported by individuals with rheumatological disorders. Other aspects of distress, such as uncertainty, loss of selfesteem and impaired body image, may also occur and in¯uence other outcomes, but they have received little attention. The role of feelings of positive well-being also may be important, but these too have not been studied in depth.13 A complication with some of the research is that the design of many studies has been cross-sectional. This design does not enable the dicult problem of causal relationships between the variables to be determined. While longitudinal studies are more valuable in examining this issue, there remain diculties in determining what time lag should elapse between measurements. In investigating the relationship between pain and depression, for example, what would the time lag be between an experience of increased pain and a resultant increase in depression or vice versa? The time delay between measurement points in longitudinal studies is often determined by convenience rather than on the basis of any theoretical perspective. When measuring mood, most research studies have used self-report questionnaires. Although these provide cut-o€ points for clinical depression and anxiety, they have been criticised as not being adequate.1 One diculty in the use of depression scales in rheumatological disorders is that they often include items, for example concerning fatigue, that can be positively scored as a result of physical illness rather than low mood. The alternative to questionnaires for assessing depression is to use a diagnostic clinical interview. These have tended to lead to a lower level of clinical depression being identi®ed, but they are less frequently studied because of the increased cost.

WHAT INTERVENTIONS ARE APPROPRIATE, AND WHAT IS THE EVIDENCE THAT SUPPORTS THEIR USE? A recognition of the importance of psychological factors in adapting to rheumatological disorders has led to the development of psychosocial interventions that attempt to modify beliefs, coping strategies and social support in order to enhance psychological well-being and health status. The most frequently measured outcomes in these studies are pain and self-reported disability, and some psychosocial interventions have shown a bene®t in terms of these outcomes.43 However, as the impact on pain and disability is covered elsewhere in this volume (see Chapters 10 and 13), these will not be reviewed here. This chapter will focus on the impact of interventions on psychological well-being. It is, however, important to remember that these variables are closely interrelated, as the discussion above has indicated. A variety of speci®c psychosocial interventions, including counselling, biofeedback and support groups, have been used, with the aim of enhancing the well-being of people with rheumatological disorders. The majority of interventions, however, contain a number of components that together are aimed at developing and improving selfmanagement skills. These include cognitive-behavioural techniques such as relaxation, imagery, problem-solving, the setting of personal goals and the restructuring of maladaptive ways of thinking. Other components include exercise, the pacing of daily activities and communication skills. Most well known of the interventions for rheumatological disorders is the Arthritis Self-Management Programme (ASMP)44, which is delivered in community settings by lay leaders who themselves have arthritis. It teaches a range of skills and aims to enhance participants' self-ecacy in managing various aspects of their disease.

Psychology of rheumatic diseases 779

The provision of information on the disease forms an integral part of most psychosocial interventions for rheumatological disorders, but information alone is not usually sucient to bring about a change in behaviour. In several studies45, education groups have been used as an attention placebo condition, and the general ®nding has been that these do not have an impact on psychological well-being. This highlights the necessity of going beyond an informational model and including other interventional components. One of the diculties in examining the e€ectiveness of these more complex psychosocial interventions lies in their multicomponent nature. Researchers have commented that we do not know which elements of the interventions have most bearing on their success46,47, and this is made more dicult by the considerable overlap in the content of di€erent intervention programmes. A review of interventions for RA and OA carried out by the authors has attempted to address this problem and has looked at the impact of the di€erent intervention components on a number of psychological variables.45 The following sections will provide a summary of the overall impact of psychosocial interventions on psychological well-being, as well as attempting to provide a greater insight into the relative values of di€erent components. Depression Psychological interventions are widely used for depression, and their bene®ts for people with rheumatological disorders have been reported in a number of reviews. Mullen et al48, for example, conducted a meta-analysis of psychoeducational interventions for arthritis and, across 11 studies of mostly RA patients, found a weighted mean e€ect size of ‡0.28 (SD ˆ 0.07; 95% con®dence interval 0.15±0.42) for depression. Hawley43 reported a weighted mean e€ect size of ‡0.01 for RA and ‡0.56 for OA patients. It is important to remember that the bene®ts obtained occur over and above those already gained from medication as the patients continued to receive standard medical care; participants in these interventions did not undergo a `wash-out' period before taking part in the studies. The review by the authors found that the majority of studies examining the in¯uence of interventions on depression involved RA patients.45 Of these, approximately one quarter reported a positive outcome at any one post-intervention time point. Interventions that led to less depression when compared with controls included a cognitive-behavioural pain management programme49,50, an inpatient rehabilitation programme51, a cognitive-behavioural treatment aimed at reducing pain and depression52, and educational lea¯ets.53,54 Mixed diagnostic groups (including RA and OA) have also been studied, generally undertaking the ASMP or a variant of it. Several of these studies reported an improvement in depression. However, the studies that showed a positive outcome were pre±post comparisons rather than controlled trials.55±58 An early review of the ASMP by Lorig and Holman59 reported that depression showed a trend towards improvement, but this improvement did not reach statistical signi®cance. Few intervention studies have assessed the impact on depression in individuals who have OA. Calfas et al60 found a signi®cant improvement in the Beck Depression Inventory score over a 12-month period for all the participants, although there was no signi®cant di€erence between a cognitive-behavioural and an education group. A pain coping skills training programme and a spouse-assisted coping skills training programme were found by Keefe et al to have a greater impact on the psychological subscale of the AIMS than did an education group.61±64 Studies by Weinberger et al65,66, in which

780 S. Newman and K. Mulligan

interviews were conducted relating to the stressors experienced by participants, did not ®nd any improvement on the psychological subscale of the AIMS. It can be seen from the above ®ndings that some positive results have been achieved by di€erent types of multicomponent programme, but it remains dicult to tell which components of the interventions are most important. In an attempt to tease out the aspects of these interventions that contribute most to the success of the programmes, the authors have conducted a systematic review to assess which components were most consistently associated with a positive outcome.45 It was found that although no single component was consistently associated with an improvement in depression, interventions that included cognitive components, such as the cognitive restructuring of unhelpful ways of thinking about the illness, tended to show a slightly greater impact on depression. Education alone was generally ine€ective, con®rming the conclusions of other researchers46,67 that while education may be necessary for change, it is not usually sucient and needs to be supplemented with other intervention techniques. A number of methodological factors suggest that the impact of psychosocial interventions on depression among those with rheumatological disorders may be understated. For example, it should be noted that, in the main, the scores of patients entering the programmes did not lie in the clinically depressed range, so a change in depression score would not necessarily be expected.59,68 In order to consider the impact of these interventions on depression and depressed mood, it would be useful to stratify the participants according to their level at entry into the study. A speci®c examination of those with a high level of depressed mood or with clinical depression would be more informative than would an analysis of the group as a whole. Furthermore, many of the interventions do not have depression as their main focus. For example, Parker et al's primary focus was on coping and problem-solving rather than emotional status.68 Many of the studies, particularly those involving RA patients, have a small number of participants and may therefore have insucient power to detect a change. The ®ndings reported above relate to interventions for individuals with OA or RA. Fewer interventions have been performed with individuals su€ering other rheumatological disorders. Basler69, however, found reduced depression among patients with ankylosing spondylitis who had undertaken a cognitive-behavioural programme. Barlow and Barefoot70 also found a reduction in depression following the Self-Management Course ± Ankylosing Spondylitis, which consisted of information, exercise and education on posture, with home checks to monitor mobility and motivation sessions.

Anxiety Fewer studies have examined the impact of psychosocial interventions on anxiety, and we found no study that has examined anxiety or anxious mood in individuals with OA. Of the studies that have been conducted in this area, most did not ®nd a signi®cant e€ect. One pre±post study with mixed diagnostic groups, however, found that UK participants on the 6-week ASMP showed an improvement in anxiety that was maintained at 12 months.56,71 In another study showing positive ®ndings, Bradley et al, working with individuals with RA, found an improvement in anxiety in both a group receiving cognitive-behavioural therapy and a group receiving education and support. Maintenance of the e€ect at a 6-month follow-up was found only in the cognitivebehavioural group.49,50 Given the high level of anxiety found in people with rheumatological disorders, it is surprising that more interventional research has not been performed.

Psychology of rheumatic diseases 781

Self-ecacy Self-ecacy is increasingly perceived as an important factor in enhancing the e€ectiveness of psychosocial interventions, and several recent studies have measured this variable. The impact of interventions on self-ecacy is more favourable than for depression, anxiety or other measures of perceptions of control. This may be because self-ecacy refers to a belief in one's ability to control certain speci®c behaviours and these are both targeted more easily and are often the object of interventions. A variety of intervention programmes have shown improvements in self-ecacy in both OA and RA, as well as with mixed diagnostic groups. Such interventions include coping skills training63,64, stress management28,68, the ASMP71 and exercise therapy.72 In line with the limitations of an educational approach, an educational lea¯et53,54 and a self-instruction programme73 were found not to enhance self-ecacy in RA patients. These ®ndings con®rm that information alone is not sucient to enhance self-ecacy. No single component emerges as being consistently successful in improving selfecacy, but aspects of behaviour therapy such as goal-setting and contracting, and training in activities of daily living, appear to be most consistently e€ective across diagnostic groups. The systematic review conducted by the authors examined only interventions for individuals with RA and OA, but similar interventions for those with ankylosing spondylitis have also been shown to enhance self-ecacy. Barlow and Barefoot70, for example, found that individuals with ankylosing spondylitis attending the SelfManagement Course ± Ankylosing Spondylitis showed enhanced self-ecacy at a 6-month follow-up. Helplessness and locus of control Improvements in helplessness and locus of control have been measured less frequently than self-ecacy. In mixed groups of OA and RA, an improvement in helplessness was found following variants of a programme based on the ASMP.57,74 The interventions with individuals with RA that have demonstrated an improvement in helplessness include a cognitive-behavioural nursing intervention designed to help participants to develop a sense of competence for dealing with both arthritis-related and other life stressors75, a stress management programme68 and a cognitive-behavioural programme designed to reduce pain and psychological symptoms and to improve coping skills.52 We found no studies on helplessness among OA patients. Studies were generally unsuccessful in altering locus of control, perhaps suggesting that this variable is less amenable to change. Of the few studies that showed positive ®ndings, an increase in personal control was found after a nurse-led cognitive-behavioural programme75 and the ASMP.76 Coping Although most studies could be said to be trying to enhance participants' coping skills, only a few have measured the change in this variable. Using the Coping Strategies Questionnaire, a measure of coping with pain, Parker et al68 found that participants in a stress management group reported making more coping attempts than those in the attention control and standard care control conditions immediately post-intervention and at 3- and 15-month follow-ups. The stress management group also reported more con®dence in their pain coping ability. Keefe et al61,62 found correlations between

782 S. Newman and K. Mulligan

changes in pain coping and pain, and self-reported disability in participants in the coping skills training programme.

Maintenance of bene®ts of psychosocial intervention It is important to consider the duration of bene®ts from psychosocial interventions for individuals with rheumatological conditions. Unfortunately, few studies have followed up their participants beyond 6 months post-intervention, and many of these did not obtain a positive outcome on earlier assessment. An encouraging ®nding, however, is that the studies that reported a positive outcome early on tended to show a maintenance of these e€ects on at least some of the psychological variables measured.56,58,60±64,68 One study showed no early impact of the intervention, but a late, 12-month e€ect on depression became apparent.49,50 Bradley et al suggest that this may be attributable to the cumulative bene®t of using cognitive-behavioural coping strategies over a long period. An important but not well-researched issue is the impact that booster sessions may have on the maintenance of any e€ect. Few studies included any booster sessions, but it is probably unreasonable to expect that a fairly brief intervention should lead to longterm bene®ts without such sessions to reinforce its e€ects. Of two studies that did provide booster sessions, one58 did not ®nd any e€ect of the booster programme, while the second showed a maintenance of the improvement in psychosocial variables from regular booster sessions.68 Further research is required to examine the e€ects of booster sessions in prolonging treatment gain and also to investigate what type of reinforcement is appropriate.

SUMMARY This chapter has highlighted the complex relationship between disease severity, disability and psychological well-being. Further longitudinal studies will be required in order to clarify this relationship. There is also a need for these studies to determine the appropriate time lag between measurements. The majority of studies have examined RA, and more research is necessary to examine psychological factors in other rheumatological disorders, as well as to compare the di€erent illnesses. Studies that have examined psychological factors have focused on depression, largely ignoring anxiety, uncertainty, loss of self-esteem and impaired body image. Further research on the role of feelings of positive well-being is also required. Psychosocial interventions for rheumatological disorders have mostly targeted pain and physical functioning. Although many have measured the impact of the intervention on psychological well-being (usually depression), this has not been the focus of the intervention. Where studies measure depression as an outcome, they need to di€erentiate between those entering the study with a high and a low level of depression. How interventions a€ect other psychological factors also needs further investigation. A systematic review by the authors indicates that education alone is not sucient to bring about an improvement in psychological well-being; other components are also necessary. An important issue that needs further investigation is the impact of booster sessions on the maintenance of intervention bene®ts.

Psychology of rheumatic diseases 783

Practice points . there is a need to assess mood, in particular depression and anxiety, in patients with rheumatological disease . clinicians need to be aware that measures of disability are not independent of mood and of how patients cope . how patients cope with their disease has a signi®cant impact and should be assessed in the clinical setting . providing information is necessary but insucient in assisting patients towards successful self-management

Research agenda . research is needed into mood states other than depression, especially anxiety and positive mood states . the uncertainty that rheumatological disease presents to individuals requires more detailed research attention . special attention should be given to those who are clinically depressed or clinically anxious, especially in the context of intervention studies . psychosocial intervention studies need to examine the longer-term impact and the potential bene®ts of booster sessions

REFERENCES * 1. DeVellis BM. Depression in rheumatological diseases. BallieÁre's Clinical Rheumatology 1993; 7(2): 241±258. * 2. Hawley DJ & Wolfe F. Depression is not more common in rheumatoid arthritis: a 10-year longitudinal study of 6153 patients with rheumatic disease. Journal of Rheumatology 1993; 20(12): 2025±2031. 3. Barlow JH, Macey SJ & Struthers GR. Health locus of control, self-help and treatment adherence in relation to ankylosing spondylitis patients. Patient Education and Counseling 1993; 20: 153±166. 4. Hawley DJ & Wolfe F. Anxiety and depression in patients with rheumatoid arthritis: a prospective study of 400 patients. Journal of Rheumatology 1988; 15(6): 932±941. 5. Brown GK. A causal analysis of chronic pain and depression. Journal of Abnormal Psychology 1990; 99(2): 127±137. 6. Parker JC, Smarr KL, Angelone EO et al. Psychological factors, immunologic activation, and disease activity in rheumatoid arthritis. Arthritis Care and Research 1992; 5(4): 196±201. 7. Wells KB, Stewart A, Hays RD et al. The functioning and well-being of depressed patients. Journal of the American Medical Association 1989; 262(7): 914±919. * 8. McFarlane AC & Brooks PM. Determinants of disability in rheumatoid arthritis. British Journal of Rheumatology 1988; 27: 7±14. 9. Katz PP & Yelin EH. Prevalence and correlates of depressive symptoms among persons with rheumatoid arthritis. Journal of Rheumatology 1993; 20: 790±796. 10. Dexter P & Brandt K. Distribution and predictors of depressive symptoms in osteoarthritis. Journal of Rheumatology 1994; 21(2): 279±286. 11. Fi®eld J, Tennen H, Reisine S & McQuillan J. Depression and the long-term risk of pain, fatigue, and disability in patients with rheumatoid arthritis. Arthritis and Rheumatism 1998; 41(10): 1851±1857. 12. Pincus T, Grith J, Pearce S & Isenberg D. Prevalence of self-reported depression in patients with rheumatoid arthritis. British Journal of Rheumatology 1996; 35(9): 879±883. 13. Barlow J. Setting a research agenda for psychosocial rheumatology. Journal of Psychosomatic Research 1998; 44(6): 619±623. 14. Spiegel JS, Leake B, Spiegel TM et al. What are we measuring? An examination of self-reported functional status measures. Arthritis and Rheumatism 1988; 31: 721±728.

784 S. Newman and K. Mulligan 15. Guccione AA, Anderson JJ, Anthony JM & Meenan RF. The correlates of health perceptions in rheumatoid arthritis. Journal of Rheumatology 1995; 22: 432±439. 16. Stein MJ, Wallston KA & Nicassio PM. Factor structure of the Arthritis Helplessness Index. Journal of Rheumatology 1988; 15: 427±432. 17. Stein MJ, Wallston KA, Nicassio PM & Castner NM. Correlates of a clinical classi®cation schema for the arthritis helplessness subscale. Arthritis and Rheumatism 1988; 31: 876±881. 18. Smith TW, Peck JR & Ward JR. Helplessness and depression in rheumatoid arthritis. Health Psychology 1990; 9: 377±389. 19. Schoenfeld-Smith K, Petroski GF, Hewett JE et al. A biopsychosocial model of disability in rheumatoid arthritis. Arthritis Care and Research 1996; 9(5): 368±375. 20. A‚eck G, Tennen H, Pfei€er C & Fi®eld J. Appraisals of control and predictability in adapting to a chronic disease. Journal of Personality and Social Psychology 1987; 53(2): 273±279. 21. Tennen H, A‚eck G, Urrows S et al. Perceiving control, construing bene®ts and daily processes in rheumatoid arthritis. Canadian Journal of Behavioural Science 1992; 24: 186±203. 22. Bandura A. Self-ecacy: toward a unifying theory of behavioral change. Psychological Review 1977; 84: 191±215. 23. Shoor SM & Holman HR. Development of an instrument to explore psychological mediators of outcome in chronic arthritis. Transactions of the Association of American Physicians 1984; 97: 325±331. 24. Lorig K, Chastain RL, Ung E et al. Development and evaluation of a scale to measure perceived selfecacy in people with arthritis. Arthritis and Rheumatism 1989; 32(1): 37±44. 25. Riemsma RP, Rasker JJ, Taal E et al. Fatigue in rheumatoid arthritis: the role of self-ecacy and problematic social support. British Journal of Rheumatology 1998; 37(10): 1042±1046. 26. Buescher KL, Johnston JA, Parker JC et al. Relationship of self-ecacy to pain behavior. Journal of Rheumatology 1991; 18(7): 968±972. 27. Buckelew SP, Huyser B, Hewett JE et al. Self-ecacy predicting outcome among ®bromyalgia subjects. Arthritis Care and Research 1996; 9(2): 97±104. 28. Smarr KL, Parker JC, Wright GE et al. The importance of enhancing self-ecacy in rheumatoid arthritis. Arthritis Care and Research 1997; 10(1): 18±26. *29. Newman S, Fitzpatrick R, Lamb R & Shipley M. Patterns of coping in rheumatoid arthritis. Psychology and Health 1990; 4: 187±200. 30. Brown GK, Nicassio PM & Wallston KA. Pain coping strategies and depression in rheumatoid arthritis. Journal of Consulting and Clinical Psychology 1989; 57(5): 652±657. *31. Keefe FJ, Brown GK, Wallston KA & Caldwell DS. Coping with rheumatoid arthritis pain: catastrophizing as a maladaptive strategy. Pain 1989; 37: 51±56. 32. A‚eck G, Urrows S, Tennen H & Higgins P. Daily coping with pain from rheumatoid arthritis: patterns and correlates. Pain 1992; 51: 221±229. 33. Scharloo M, Kaptein AA, Weinman JA et al. Predicting functional status in patients with rheumatoid arthritis. Journal of Rheumatology 1999; 26: 1686±1693. *34. Newman S, Fitzpatrick R, Revenson TA et al. Understanding Rheumatoid Arthritis. London: Routledge, 1996. 35. Ward MM & Leigh JP. Marital status and the progression of functional disability in patients with rheumatoid arthritis. Arthritis and Rheumatism 1993; 36: 581±588. 36. Newman SP, Fitzpatrick R, Lamb R & Shipley M. The origins of depressed mood in rheumatoid arthritis. Journal of Rheumatology 1989; 16: 740±744. 37. Taal E, Rasker JJ, Seydel ER & Wiegman O. Health status, adherence with health recommendations, selfecacy and social support in patients with rheumatoid arthritis. Patient Education and Counseling 1993; 20: 63±76. 38. McNally ST & Newman S. Objective and subjective conceptualizations of social support. Journal of Psychosomatic Research 1999; 46(4): 309±314. 39. Fitzpatrick R, Newman S, Archer R & Shipley M. Social support, disability and depression: a longitudinal study of RA. Social Science and Medicine 1991; 33: 605±611. 40. Manne S & Zautra A. Couples coping with chronic illness: women with rheumatoid arthritis and their healthy husbands. Journal of Behavioural Medicine 1990; 13: 327±342. 41. Manne SL & Zautra AJ. Spouse criticism and support: their association with coping and psychological adjustment among women with rheumatoid arthritis. Journal of Personality and Social Psychology 1989; 56(4): 608±617. 42. Kraaimaat FW, Van Dam-Baggen RMJ & Bijlsma JWJ. Association of social support and the spouse's reaction with psychological distress in male and female patients with rheumatoid arthritis. Journal of Rheumatology 1995; 22: 644±648. 43. Hawley DJ. Psycho-educational interventions in the treatment of arthritis. BaillieÁre's Clinical Rheumatology 1995; 9(4): 803±823.

Psychology of rheumatic diseases 785 44. Lorig K & Gonzalez V. The integration of theory with practice: a 12-year case study. Health Education Quarterly 1992; 19(3): 355±368. 45. Mulligan K, Steed E & Newman S. A systematic review of the impact of self-management interventions on psychological well-being in individuals with arthritis, 2000 (submitted for publication). *46. DeVellis RF & Blalock SJ. Psychological and educational interventions to reduce arthritis disability. BaillieÁre's Clinical Rheumatology 1993; 7(2): 397±416. 47. Hirano PC, Laurent DD & Lorig K. Arthritis patient education studies, 1987±1991: a review of the literature. Patient Education and Counseling 1994; 24: 9±54. 48. Mullen PD, Laville EA, Biddle AK & Lorig K. Ecacy of psychoeducational interventions on pain, depression and disability in people with arthritis: a meta-analysis. Journal of Rheumatology 1987; 14 (supplement 15): 33±39. 49. Bradley LA, Young LD, Anderson KO et al. E€ects of psychological therapy on pain behavior of rheumatoid arthritis patients. Treatment outcome and six-month follow-up. Arthritis and Rheumatism 1987; 30(10): 1105±1114. 50. Bradley LA, Young LD, Anderson KO et al. E€ects of cognitive-behavioral therapy on rheumatoid arthritis pain behavior: one year follow-up. Pain Research and Clinical Management 1988; 3: 310±314. 51. Spiegel JS, Spiegel TM, Ward NB et al. Rehabilitation for rheumatoid arthritis patients. A controlled trial. Arthritis and Rheumatism 1986; 29(5): 628±637. 52. Liebing E, P®ngsten M, Bartmann U et al. Cognitive-behavioral treatment in unselected rheumatoid arthritis outpatients. Clinical Journal of Pain 1999; 15: 58±66. 53. Barlow JH, Pennington DC & Bishop PE. Patient education lea¯ets for people with rheumatoid arthritis: a controlled study. Psychology, Health and Medicine 1997; 2(3): 221±235. 54. Barlow JH & Wright CC. Knowledge in patients with rheumatoid arthritis: a longer term follow-up of a randomized controlled study of patient education lea¯ets. British Journal of Rheumatology 1998; 37: 373±376. 55. Barlow JH, Williams B & Wright CC. Improving arthritis self-management among older adults: `Just what the doctor didn't order'. British Journal of Health Psychology 1997; 2: 175±186. 56. Barlow JH, Turner AP & Wright CC. Long-term outcomes of an arthritis self-management programme. British Journal of Rheumatology 1998; 37: 1315±1319. 57. Goeppinger J, Macnee C, Anderson MK et al. From research to practice: the e€ects of the jointly sponsored dissemination of an arthritis self-care nursing intervention. Applied Nursing Research 1995; 8(3): 106±113. 58. Lorig K & Holman HR. Long-term outcomes of an arthritis self-management study: e€ects of reinforcement e€orts. Social Science and Medicine 1989; 29(2): 221±224. 59. Lorig K & Holman H. Arthritis self-management studies: a twelve year review. Health Education Quarterly 1993; 20(1): 17±28. 60. Calfas KJ, Kaplan RM & Ingram RE. One-year evaluation of cognitive-behavioral intervention in osteoarthritis. Arthritis Care and Research 1992; 5(4): 202±209. 61. Keefe FJ, Caldwell DS, Williams DA et al. Pain coping skills training in the management of osteoarthritic knee pain: a comparative study. Behavior Therapy 1990; 21: 49±62. 62. Keefe FJ, Caldwell DS, Williams DA et al. Pain coping skills training in the management of osteoarthritic knee pain. II. Follow-up results. Behavior Therapy 1990; 21: 435±447. 63. Keefe FJ, Caldwell DS, Baucom D et al. Spouse-assisted coping skills training in the management of osteoarthritic knee pain. Arthritis Care and Research 1996; 9(4): 279±291. 64. Keefe FJ, Caldwell DS, Baucom D et al. Spouse-assisted coping skills training in the management of knee pain in osteoarthritis: long-term followup results. Arthritis Care and Research 1999; 12(2): 101±111. 65. Weinberger M, Hiner SL & Tierney WM. Improving functional status in arthritis: the e€ect of social support. Social Science and Medicine 1986; 23(9): 899±904. 66. Weinberger M, Tierney WM, Booher P & Katz BP. The impact of increased contact on psychosocial outcomes in patients with osteoarthritis: a randomized controlled trial. Journal of Rheumatology 1991; 18(6): 849±854. 67. Taal E, Rasker JJ & Wiegman O. Group education for rheumatoid arthritis patients. Seminars in Arthritis and Rheumatism 1997; 26(6): 805±816. 68. Parker JC, Smarr KL, Buckelew SP et al. E€ect of stress management on clinical outcomes in rheumatoid arthritis. Arthritis and Rheumatism 1995; 38(12): 1807±1818. 69. Basler H-D. Group treatment for pain and discomfort. Patient Education and Counseling 1993; 20: 167±175. 70. Barlow JH & Barefoot J. Group education for people with arthritis. Patient Education and Counseling 1996; 27: 257±267. 71. Barlow JH, Turner AP & Wright CC. Sharing, caring and learning to take control: self-management training for people with arthritis. Psychology, Health and Medicine 1998; 3(4): 387±393.

786 S. Newman and K. Mulligan 72. Stenstrom CH. Home exercise in rheumatoid arthritis functional class II: goal setting versus pain attention. Journal of Rheumatology 1994; 21(4): 627±634. 73. Riemsma RP, Taal E, Brus HLM et al. Coordinated individual education with an arthritis passport for patients with rheumatoid arthritis. Arthritis Care and Research 1997; 10(4): 238±249. 74. Goeppinger J, Arthur MW, Baglioni AJ Jr et al. A reexamination of the e€ectiveness of self-care education for persons with arthritis. Arthritis and Rheumatism 1989; 32(6): 706±716. 75. Sinclair VG, Wallston KA, Dwyer KA et al. E€ects of a cognitive-behavioral intervention for women with rheumatoid arthritis. Research in Nursing and Health 1998; 21: 315±326. 76. Stephenson KS, Yee BWK & Lisse JR. Adaptive coping skills for older African Americans with arthritis. Topics in Geriatric Rehabilitation 1997; 12(3): 75±87.