Psychological and educational interventions to reduce arthritis disability

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Psychological and educational interventions to reduce arthritis disability R O B E R T F. D e V E L L I S S U S A N J. B L A L O C K

Arthritis is a major source of disability. A recent volume (Disability in America, Pope and Tarlov, 1991) prepared in the United States by the Institute of Medicine discusses general patterns of disability in that country. Citing data from the National Health Interview Survey (NHIS), Disability in America notes that, among persons with activity limitations, 18.8% report arthritis as a cause of their limitation and 12.3% report it as the primary cause. With increasing age, the role of arthritis as a source of disability increases. Among Americans over the age of 65, arthritis is the most prevalent health problem. Furthermore, when the total number of years of disability across the United States population is examined, arthritis is the primary contributor. Despite the fact that arthritis typically occurs later in life and, thus, can contribute only a limited number of disability years per individual, its widespread prevalence results in a very large net contribution to disability. In light of the extensive disability stemming from arthritis, efforts to abate the negative impact of rheumatic diseases are extremely important. With many health problems, such as cardiovascular disease or cancer, the public health goal is primary prevention, that is, precluding the occurrence of the disease by encouraging individuals to engage in precautionary behaviour, such as avoiding saturated fats in the diet or refraining from smoking tobacco. Unfortunately, with few exceptions (e.g. Lyme disease, osteoporosis), opportunities for primary prevention in the case of arthritis and related musculoskeletal diseases are limited because the aetiologies of many arthritic diseases are ill understood (DeVellis et al, 1991). Consequently, in arthritis, current prevention efforts are more likely to focus on minimizing disability after the onset of the disease than on preventing the disease from occurring in the first place. The state of disability is o f t e n defined in terms of lost or restricted occupational or leisure activity (Lohr, 1988) or, more broadly, as the inability or limited ability to engage in socially defined activities and roles, within a particular cultural, social, and physical environment (Pope and Tarlov, 1991). Disability may also be viewed as the culmination of a process, beginning with pathology, which may lead progressively to impairment, Bailli~re's ClinicalRheumatology-Vol. 7, No. 2, June 1993 ISBN 0-7020-1710-8

397 Copyright9 1993,by Bailli~reTindall All rightsof reproductionin anyformreserved

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functional limitation, and, ultimately, disability. Pathology is a functional or structural abnormality manifested at the cellular or tissue level of organization. Atypical levels of serum components is an example of pathology, according to this definition. Impairment, in contrast, is a physiological, anatomical, or mental abnormality attributable to pathology and occurring at the organ or organ system level of organization. Pain is an example of impairment. Impairment may progress to functional limitation, which manifests itself at the levels of the organism and is typically a reduced capacity to perform some action or activity, such as requiring an unusually long time to walk a specified distance. Finally, disability is defined on the social level and, as already noted, is an impairment in the ability to fulfil roles or engage in socially normative actions. This conceptual framework for disability (Pope and Tarlov, 1991) is based on seminal work by the International Classification of Impairments, Disabilities and Handicaps of the World Health Organization. Disability can be prevented, according to this model, by correcting a problem at one of the several stages or by interrupting progression across stages. Conceptualizing disability as a process makes it easier to recognize that medical, environmental, psychological and social factors all may interact in hastening or retarding the decline towards disability. The diversity of intervention modes in arthritis implicitly acknowledges that the causes of arthritis disability are multifactorial. In addition to a variety of physical rehabilitation measures that can reduce disability stemming from arthritis, psychological and educational interventions are widely regarded as potentially effective modalities for reducing disability. In the remainder of this chapter, the types of outcomes that have been examined as indicators of intervention success are briefly considered and the major components that make up the majority of psychological and educational interventions for arthritis are reviewed. Several issues concerning efficacy are examined and the evidence for the effectiveness of intervention summarized.

OUTCOMES EVALUATED The outcomes examined in evaluations of psychological and educational interventions for arthritis vary widely and are used in numerous combinations. Most outcomes commonly measured in intervention trials concern the health status of individual participants. In discussing these health status outcomes, it is useful to classify them, when possible, according to the disability model just discussed. Intervention studies have evaluated outcomes corresponding to several of these stages. Table 1 summarizes the types of outcomes that are most commonly evaluated. In addition to health status outcomes that can be classified according to a disability model, utilization of health care services is sometimes assessed to evaluate programme effectiveness (e.g. Holman et al, 1988, 1989). This type of assessment provides information about the potential impact of an

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intervention on society as a whole by allowing the comparison of relative costs accrued over time for participants versus controls. Still another type of intervention outcome variable is occasionally reported. The measures considered thus far represent end points of an intervention effort aimed at containing disability at a particular stage. By applying these measures, interveners can determine if a given individual has or has not progressed past a specific point on the disability progression. For example, the developer of an intervention intended to reduce ambulatory problems might measure walking time to evaluate the programme's success. In addition to these distal outcomes, intervention programmes often assess more proximal, intervening variables that are thought to be precursors of various end points. For instance, because self-efficacy has been associated with more favourable illness outcomes, a goal of some current interventions is to increase participants' perceptions of themselves as efficacious (e.g. O'Leary et al, 1988). Thus, if it is believed that self-efficacy (e.g. a belief in one's own ability to ambulate) played an important role in mobility, both self-efficacy and walking time might be assessed. Interventions derived from theoretical frameworks other than self-efficacy would have alternative proximal goals (e.g. enhanced problem-solving ability, a greater sense of perceived control) that presumably intervene between the intervention activities and end points of interest. Such programmes will often include indicators of these proximal goals among their outcome measures. Finally, intervention programmes may measure process variables. These are variables that assess whether the procedures making up the intervention are being perceived by participants as it is intended. Hill et al (1989), as a case in point, measured the extent to which both patients and therapists perceived their psychotherapeutically oriented intervention sessions as 'deep' (i.e. exploring issues in a valuable way) and 'smooth' (i.e. easy, relaxed, and pleasant). More commonly, programme implementers may ask participants to rate their degree of enjoyment of or satisfaction with an intervention programme. These measures can be regarded as indicating the acceptability of an intervention to participants. INTERVENTION COMPONENTS Although most psychoeducational interventions aimed at preventing arthritis-related disability are hybrids, it is possible to identify several key .components that, in various combinations, make up the majority of these interventions. Moreover, it may be more useful, when possible, to evaluate the efficacy of individual components than to compare different intact programmes. Seemingly dissimilar programmes may actually achieve their effects because of certain elements that they share. Furthermore, evaluating components rather than programmes as a whole may facilitate the construction of new interventions that make maximal use of the most effective intervention procedures. In the following sections, we will briefly describe the components that often are included in psychological and educational interventions and discuss their efficacy.

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General information

General information is not usually regarded as a major intervention component. More often, it is treated either as a minor ingredient of a multi-element intervention strategy or is used as a control condition against which to compare some more ambitious intervention strategy. None the less, some studies have reported improvement in participants randomized to receive information only (e.g. O'Leary et al, 1988). However, spontaneous improvement also has been reported for participants receiving no treatment beyond usual care (Bradley et al, 1987) and seasonal variations in symptoms may partially explain the apparent benefits observed. Also, other investigators who have included information-only control groups have failed to find beneficial effects. Radojevic et al (1992), for example, concluded 'it is clear that the provision of education about RA in a generally supportive atmosphere does not lead to significant clinical improvement' (p 28) in measures of pain, physical functioning, psychological status, or disease activity. In general, there is little evidence to support the conclusion that providing educational information, by itself, has a beneficial impact on arthritis. Illness self-management skills

A number of educational programmes have taken basic skills, traditionally taught to individual patients by nurses, occupational and physical therapists, and have integrated them into arthritis interventions. The types of skills taught include the use of heat and massage as pain management tools, protection of joints through improved body mechanics, conservation of energy through pacing activities, and the prudent practice of exercise and rest. Self-management programmes have incorporated these skills into programmes emphasizing how people can most effectively monitor and respond to their illness. Additional self-management skills include knowing how to solve arthritis-related problems and how to adapt and combine various techniques to achieve maximal benefit. Lorig's original Arthritis Self-Management (ASM) programme (Lorig and Fries, 1980; Lorig, 1986) included, among other intervention elements, training in the use of various therapeutic modalities of this type. Moreover, early data from the ASM programme demonstrated significant improvements in a variety of clinical outcomes. Mullen et al (1987) conducted a meta-analysis o(psychoeducational interventions for arthritis. Three of the studies they examined were based on Lorig's ASM programme. Among the changes noted in these reports were improvement in pain, depression, and physical abilities as measured by the Health Assessment Questionnaire (HAQ; Fries et al, 1982). However, these benefits did not occur consistently across the studies. That is, one study might yield an improvement in patients' reported pain but no significant change in functional ability whereas another might report the opposite. In addition, it is difficult to ascribe such positive changes as did occur to specific components of the programme because the programme was designed to include multiple

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therapeutic elements. In describing the evolution of the ASM, Gravelle (1985) observes that the programme successfully changed participants' behaviour in the direction of greater use of the illness-management behaviours that are the topic of this section. In addition, participants generally demonstrated greater arthritis knowledge and less pain than did controls. However, Gravelle goes on to observe, the relationships among these changes were not what one might expect: reduced pain was unrelated to how often participants practised the illness-management behaviours. To Lorig's credit, these findings led her to explore other alternatives and to revise her programme accordingly. Another factor that complicates the interpretation of results from selfmanagement programmes is the diversity of diagnoses among the patients involved (see Lorig et al, 1987, for a discussion). If different self-management skills are differentially effective for particular types of arthritis, overall patterns may be masked when data are aggregated across diagnoses. In summary, the findings are mixed, at best, concerning the impact of illness self-management skills on arthritis outcomes that might contribute to disability. This does not suggest that the same skills, when taught in a one-to-one therapeutic context by a physical or occupational therapist, are ineffective. The data we have examined merely suggest that, in the context of an educational or psychological intervention, training patients to use these techniques to manage their arthritis is of unknown benefit. As programmes of this type evolve, it is likely that a clearer picture will emerge of which components contribute to the overall success that some selfmanagement programmes have achieved. Biofeedback

Biofeedback often has been used as a therapeutic modality in psychological interventions for arthritis. These methods involve providing an amplified signal (typically a tone or light) that corresponds to the state of some biological process occurring to a patient that might otherwise be difficult for the patient to detect. These programmes may teach patients to relax muscles proximal to a painful joint (e.g. Wickramasekera et al, 1976) or other painful site (Flor et al, 1983) in the hope of relieving pain at that location. Alternatively, biofeedback training might be used as an aid to developing skills at relaxing skeletal muscle more generally, with the .biofeedback device monitoring the status of a 'marker' muscle, such as the frontalis (e.g. ,Wickramasekera et al, 1976). Another biofeedback procedure involves training the patient to raise the temperature of a 'marker' site such as the forearm (e.g. Achterberg et al, 1981), which presumably indicates improved blood flow to the periphery as a consequence of a general state of relaxation. Others (e.g. Bradley et al, 1987) have attempted to increase skin temperature at a location proximal to a specific tender area. Results of biofeedback interventions for arthritis are somewhat ambiguous. A common problem is difficulty in monitoring or achieving the desired physiological states. For example, Wickramasekera et al (1976) reverted to training relaxation of the frontalis when the muscle activity near the affected

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site proved to be unstable. Using the frontalis as a target site, they achieved pain reduction in two arthritis patients studied. Flor et al (1983) had greater success in using electromyographic (EMG) feedback from muscles proximal to an affected joint and reported pain reduction in seven of eight patients treated with biofeedback. Achterberg et al (1981) examined the effects of biofeedback-mediated skin temperature training on multiple outcomes among 24 RA patients. They observed positive effects on pain, sleep patterns, and tension following training. However, these effects were evident whether patients were trained to increase or decrease skin temperature, despite the fact that only the former would be expected to result in benefit. The authors note that, irrespective of training condition, all patients maintained skin temperatures above their baseline levels during training. In a second study, these authors found that biofeedback coupled with relaxation was superior to physiotherapy in enhancing physical functioning. However, it is unclear which of the combined therapeutic elements contributed to the observed benefits. Bradley et al (1987) also examined the effects of an intervention that combined biofeedback with other treatment elements. Their design did not allow them to ascribe specific effects to particular elements of the treatment unequivocally. However, questions asked of participants revealed that fewer than a third ascribed major benefit to biofeedback whereas more than 80% viewed muscle relaxation as highly beneficial. Also, the participants' ability to alter skin temperature reliably appears to have been marginal. Taken as a whole, these studies demonstrate that biofeedback combined with other intervention elements can have beneficial effects but the available data do not warrant regarding biofeedback alone (at least, in the case of EMG and skin temperature biofeedback) as reliably effective in helping patients with arthritis. The apparent success of earlier studies may have stemmed from the more limited range of outcome measures examined or from strong patient expectation that the intervention would have a beneficial effect.

Cognitive-behavioural techniques Related to biofeedback are a broader range of techniques associated with behaviour therapy or cognitive-behaviour therapy. These procedures are intended to increase such skills as voluntary relaxation of the skeletal muscles (e.g. Appelbaum et al, 1988), diverting attention away from pain (e.g. Parker et al, 1988), re-interpreting pain by challenging irrational pain-related cognitions (e.g. Keefe et al, 1990), solving everyday problems more effectively through the use of learned and practised cognitive procedures (e.g. Parker et al, 1988), self-reinforcement of adaptive behaviour (e.g. Bradley et al, 1987), increasing assertiveness (e.g. Strauss et al, 1986), and developing a view of oneself that emphasizes a sense of mastery or control (O'Leary et al, 1988). These are among the most widely applied psychological intervention modalities used with patients with arthritis. In many instances, cognitivebehavioural methods have been combined with other therapeutic elements. In fact, marly programmes not identified as cognitive-behavioural have

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included elements of this type. Space prohibits a detailed discussion of all the individual studies that have used cognitive-behavioural techniques. Beneficial effects following the application of these techniques are common, although often rather modest. As noted earlier, Bradley et al (1987) reported initial benefits among his RA patients using biofeedback-assisted cognitive-behavioural therapy. Moreover, a component of the latter type, i.e. relaxation training, was rated by participants as highly effective. Bradley's study included a 6-month follow-up assessment. At follow-up the differences between the cognitivebehavioural group and other conditions had largely diminished, suggesting that the benefits initially obtained were not highly durable. Radojevic et al (1992) also observed more benefits for RA patients involved in cognitive-behavioural treatment than in comparison conditions. This last study is especially interesting for several reasons. First, the ascription of benefits to cognitive-behavioural methods is facilitated by the design of the study, which contrasted two cognitive-behavioural interventions (with and without family support as an element) with family-support-only and notreatment groups. The cognitive-behavioural groups were generally superior to the alternatives. Secondly, as with the Bradley et al (1987) investigation, the study included a follow-up (2 months), thus providing some indication of the persistence of changes. At least within the time period examined, the effects of cognitive-behavioural treatment remained superior to the two control conditions. However, it is unknown whether these benefits would have persisted had a longer follow-up assessment been made. This study also provides some insights into the mechanisms of change. For example, the study revealed alterable intervening variables, such as coping passively with pain, that might mediate between intervention efforts and outcomes. Similarly, the study reported by O'Leary and colleagues sheds light on the mechanisms that may account for beneficial changes resulting from a cognitive-behavioural intervention. In that study, treatment group subjects experienced reductions in depression, stress, coping inadequacy, and sleep disturbances. Moreover, a specific intervening variable, i.e. perceived selfefficacy, appears to have accounted for some of the observed benefits. An explicit objective of the programme was to increase a sense of self-efficacy among the participants. Previous psychological research suggests that a sense of self-efficacy may contribute to beneficial outcomes. Among patients in the intervention group, self-efficacy was increased significantly and correlated positively with improved outcomes, thus offering support for the role of self-efficacy. At 4-month follow-up, intervention-group participants maintained their status but control-group subjects mysteriously had improved. If this latter improvement is ascribed to possible factors such as seasonal differences (the follow-up period was during the summer), then the sustained improvements manifested by the intervention subjects may have similarly been influenced by artefact~ Overall, there is a substantial body of evidence pointing to the utility of cognitive-behavioural techniques in bringing about positive changes in patients with arthritis. Often, the outcomes favourably affected are functional limitation variables (e.g. pain). Enduring changes in pathology

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indicators are not generally evident. Although the evidence of posttreatment benefits are encouraging, follow-up data are less so. The evidence in support of sustained, long-term benefits is largely absent. However, it may be expecting too much of a single round of intervention to produce effects that do not decay over time. The provision of periodic 'booster' treatments might increase the durability of benefits from cognitivebehavioural interventions, although this has not been systematically evaluated, to our knowledge.

Non-behavioural psychotherapeutic techniques In addition to procedures associated primarily with behavioural and cognitive therapies, certain other therapeutic modalities also have served as a basis for arthritis interventions, for example, hypnosis as an aid to relaxation and a means of focusing on guilt and anger (Sthalekar, 1991); traditional group therapy emphasizing the sharing of arthritis-related feelings (e.g. Strauss et al, 1986); and Gestalt psychotherapy employing experiential procedures to explore unresolved interpersonal anger (Hill et al, 1989). The available research literature suggests that these types of interventions have been used to treat arthritis less frequently than cognitive-behavioural treatments and have been subjected to less systematic scrutiny. Typically, psychotherapeutic techniques have not been targeted specifically at arthritis. That is, investigators have not suggested that these techniques are differentially effective in the treatment of arthritis. Rather, various psychotherapeutic methods are presumed to be of value in treating certain sequelae of arthritis (e.g. negative emotions) because they appear effective in treating similar problems when they arise from causes other than arthritis. It is likely that methods of this sort are used more widely than the research literature indicates. Many patients who experience life adjustment difficulties, marital strains, or depression as a result of arthritis may seek help from psychotherapists. However, the practitioners rendering assistance may not regard their interventions as related to arthritis p e r se but to the specific psychological or social complaint that the patient presents as the reason for seeking help. Even the relatively few published reports of psychotherapeutic techniques applied to patients with arthritis pay relatively little attention to the arthritis as a source of the presenting complaints. For example, the previously cited paper by Hill et al (1989) makes reference to 'chronic pain' in its title, but not to arthritis. Given the small number of published studies, the small number of patients and therapists participating in those studies, the coexistence of multiple intervention components, and the frequent lack of appropriate controls, it is difficult to reach general conclusions about the efficacy of psychotherapeutic procedures as a means of reducing distress or disability stemming from arthritis. What little evidence there is suggests that these methods may be helpful in specific instances. However, generalizing from the meagre amount of available data is difficult and these methods probably should not be among the first chosen for use on a wide scale to relieve distress or disability stemming from arthritis.

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Social support

Another intervention component involves assisting individuals with arthritis by providing, or helping them to cultivate, supportive relationships. These relationships may be formal (e.g. with paid interviewers, as in Weinberger et al, 1986) or informal (e.g. with family members, as in Radojevic et al, 1992, or other patients, as in Shearn and Fireman, 1985). The type of support provided may be emotional (e.g. opportunities for discussing feelings related to arthritis), instrumental (e.g. the rendering of assistance with transportation problems), informational (e.g. providing information about proper medication usage), or any combination of these. Programmes that incorporate elements of social support differ in the degree to which they acknowledge support as an intention of their intervention. For example, Weinberger and colleagues (1986) provided telephone contacts which they interpreted as supportive in nature. However, the authors appear initially to have viewed access to information, not social support per se, as the primary purpose of those contacts. Similarly, although others have noted that Lorig's ASM programme contains elements that one might expect to be supportive (DeVellis et al, 1986), providing support as such was never a goal of the programme (Lorig, personal communication, 1992). In contrast, Radojevic et al (1992) specifically hypothesized that the involvement of supportive family members would enhance the efficacy of their intervention. General studies of the relationship of social support to health outcomes have often produced encouraging results (see Wallston et al, 1983). Therefore, it is not surprising that several investigators have examined the ability of social support to attenuate the adverse effects of arthritis. Weinberger and colleagues have reported a series of studies in which the effects of social support, provided via telephone, were examined. An early study (Weinberger et al, 1986) in this series was encouraging with respect to the utility of telephone support. Osteoarthritis patients receiving biweekly telephone contacts for 6 months reported higher levels of perceived support at the conclusion than at the beginning of the study period and experienced less physical disability and pain, as assessed by the Arthritis Impact Measurement Scales (AIMS; Meenan et al, 1980). However, there was no control group included in the study. In a subsequent study (Weinberger et al, 1989), four groups of patients were defined. One received no support, a second received in-person support only, a third received telephone support only, and a fourth received both telephone and in-person support. The analysis of interest contrasted groups receiving no telephone support (i.e. the first two of the preceding groups, combined) to those receiving it (i.e. the last two groups, combined). This contrast yielded evidence of apparent benefits for those receiving telephone contacts, assessed a year after the study began. However, the average of the no-phone groups was lowered by the inclusion of the in-person-only subjects, whose status actually worsened. Thus, the apparent advantage of phone support may be partially explained by the surprisingly deleterious effect of in-person-support-only group's data on the overall comparison of phone-support vs no-phone-support groups. In a follow-up report, Ren6 et al (1992) sought to clarify the nature of the

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effects observed in the earlier study involving multiple groups. Suspecting that concurrent changes in medical therapy may have obscured their results, they further examined their data. In all, 40 patients from the previous study were identified who had not undergone significant changes in medical care and for whom radiographic and symptomatic evidence of OA was available. AIMS scores for these individuals at baseline did not differ as a function of group assignment. However, when the two groups of primary interest (phone support only and no intervention) were contrasted, the former manifested significant improvement in pain and a non-significant improvement in physical functioning, relative to the no-intervention group. These data offer stronger supportive evidence of the benefits of telephone support than do either of the earlier studies reported by this group of investigators. Taken together, the studies reported by these investigators provide some evidence for the efficacy of social support via telephone in reducing pain in OA. Surprisingly, their data suggest that in-person support of the type they offered was less beneficial than no intervention at all. Shearn and Fireman (1985) conducted a trial involving 105 R A patients who were randomized into a stress management, social support, or nonintervention group. The social support intervention consisted of a series of 10 weekly 90-minute sessions, led by a psychologist but with content and direction of discussions determined by the participating patients. Upon entry into the study and at 8-month follow-up, patients were given a battery of tests including assessments of pain severity, duration of morning stiffness, erythrocyte sedimentation rate, grip strength, walking speed, number of tender joints, self-care activities, social activities, life satisfaction, and depression. At follow-up the only difference between the two intervention (i.e. stress management and social support) groups and the non-intervention group was a greater improvement in joint tenderness among the former. With respect to sample size, random assignment, and the range of measures taken, this study is exemplary. However, its operationalization of social support leaves something to be desired. At a minimum, a manipulation check to assess whether the patients perceived greater support as a result of participation would have been in order. Furthermore, the findings are at odds with other reports of cognitive-behavioural interventions using stress management techniques, although many behavioural programmes include other modalities together with stress management and the effects are difficult to isolate. Nonetheless, the study reveals only that the specific type of social support intervention tested was relatively ineffective. The authors conclude that 'if stress management and mutual support do provide substantial patient benefits, we believe that results such as ours would be unlikely' (Shearn and Fireman, 1985, p 774). This is not necessarily the case. For example, it is possible that naturally occurring support groups are substantially more effective in producing favourable health outcomes than are artificially created ones. This conclusion is consistent with data reported by DeVellis et al (1986). They found that perceived level of social support was not enhanced as a consequence of participating in a lay-led, group-based arthritis intervention that encouraged sharing of feelings, problems and solutions. However, irrespective of randomization into the intervention or

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control conditions, pain reports among the entire group of patients studied were predicted prospectively more strongly by social support than by participation in any of several self-management activities or participation in the intervention as a whole. The support that apparently made a difference existed prior to participation in the intervention and was not altered by it. Nonetheless, this pre-existing support exerted a substantial impact. The DeVellis et al (1986) study illustrates that assessing the impact of social support on arthritis symptoms can be a tricky business. Merely providing opportunities for patients with similar problems to interact in a friendly environment does not necessarily increase their perceived level of social support. It may be that all we can do is offer opportunities for supportive interaction. However, we have no assurance that these opportunities actually result in the provision or receipt of support. (See Chapter 10 elsewhere in this volume, for a discussion of negative support.) Several studies have compared interventions incorporating social support to cognitive-behavioural programmes that excluded support. Comparisons of this type are subject to some of the same criticisms as the Shearn and Fireman study. Specifically, it is not possible to equate the provision of opportunities for support with the actual receipt of support. Radojevic et al (1992) included an intervention group in which family members were involved with patients. This approach has the advantage of making use of established relationships among family members rather than relying on strangers to provide support. Despite this apparent advantage, the study found only joint swelling to differentiate the support-included from the support-excluded cognitive-behavioural group. Cognitive-behavioural groups, irrespective of support manipulation, were generally superior to non-intervention groups. Viewed as a body of empirical work, the studies reviewed in this section offer little evidence that providing opportunities for social support yields consistent benefits for arthritis patients. However, the distinction between support that is provided via an intervention and support that occurs naturally is important. The frequent failure of social support interventions in arthritis to yield consistent improvements does not imply that naturally occurring support received from friends or family is necessarily of little value. It may simply be that beneficial support involves considerably more than mere contact. INTERVENTION EFFICACY

Issues related to assessing efficacy The efficacy issue of chief interest to most readers is, 'which programmes work?' Unfortunately, the answer is less simple than merely enumerating successful programmes. The way that programme goals are defined, successes measured, and therapeutic efforts linked to gains, for example, all must be considered in determining which programmes are most effective. In this section, we shall examine these and other issues related to efficacy, referring to evaluations of specific intervention programmes to clarify the issues.

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Definition of effectiveness Unlike acute conditions in which a complete recovery is the goal, the successful prevention of arthritis disability is an ambiguous objective. For example, maintaining the status quo might actually be a success if the alternative were progressive deterioration. Thus, it is important when evaluating the efficacy of psychological and educational interventions that the results should not be compared only with pre-intervention status but with the outcome resulting from non-intervention as well. This is especially true when long-term effects are examined. Many intervention evaluations, therefore, have included one or more control or comparison groups against which to gauge benefits. It is noteworthy that, unlike most drug trials, these studies used comparison groups that continued to receive alternative therapies. Typically, there was no wash-out period, during which drugs were withheld, prior to initiating an evaluation of a psychoeducational intervention. Thus, any benefits attributable to the intervention were above and beyond those achieved with conventional treatment, including medication and other aspects of physician care. On one hand, this circumstance requires that psychoeducational interventions be fairly powerful in order to demonstrate an effect. On the other hand, it constitutes a realistic test of efficacy because these interventions are not intended as replacements for conventional medical treatment. Rather, they are of interest chiefly if they can improve upon basic medical management of the illness. Thus, a reasonable criterion for classifying an intervention as effective should include a demonstration that it achieves benefits beyond those resulting from conventional treatment alone. An alternative criterion would be that it achieves benefits comparable to those resulting from conventional therapy but does so with fewer adverse effects or at a lower cost. However, this latter criterion appears not to have been adopted in evaluating psychoeducational interventions for arthritis.

Acceptability In order for an intervention to be maximally effective, it must be used. Thus, in addition to possessing the ability to produce desirable outcomes, a potentially effective intervention must also be acceptable. Acceptability can apply to multiple constituencies, including not only the patient but the primary care provider and the parties assuming the cost for treatment. Acceptability is a process variable that is not universally included in intervention evaluations. However, some conclusions can be drawn. Generally, most programmes seem well accepted. Investigators who examined acceptability or satisfaction typically reported positive participant evaluations (e.g. Weinberger et al, 1986; Hill et al, 1989). However, the implicit message that an intervention communicates to patients regarding the nature of their illness may affect acceptability. Specifically, interventions that use primarily psychological intervention modes, such as group therapies, may convey to patients that the interveners believe their problems are 'all in their heads'. Programmes that address both physical and psychological aspects of

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arthritis may avoid sending this unintended message. For example, in their study of the relative efficacy of multiple interventions delivered sequentially, Bruce et al (1988) found that preceding cognitive-behavioural treatment with transcutaneous neural stimulation (TNS) increased its effectiveness to some degree. The authors speculated that the use of TNS prior to purely psychological procedures may have had the beneficial effect of suggesting to patients that their arthritis pain was not perceived as purely a psychological phenomenon.

Specific vs general outcomes A related issue concerns how narrowly or broadly one looks for improvements. As Tucker and Kirwan (1991) note, arthritis interventions have examined a broad diversity of knowledge, skill and attitudinal factors. For example, Lorig's original Arthritis Self-Management programme, measured a wide range of variables that might change in response to the intervention. These included assessments of mobility, self-care, social functioning, pain and use of health resources. Other programmes have concentrated much more narrowly on a limited range of outcomes. Certain biofeedback studies, for example, were concerned with reducing the tension in specific muscle groups, although subjective correlates of enhanced relaxation were also assessed. Clearly, it means something quite different to ask whether more relaxation of a specific muscle group can be achieved via an intervention than to ask whether more mobility, less pain, greater social functioning, and fewer demands on the health care system can be achieved. In evaluating programme effectiveness one must differentiate between programmes that achieved limited objectives and those that have achieved broader goals.

Duration of effects Different programmes have examined results over different time periods. Assessing benefits over time is potentially important for at least two reasons. Some interventions might have a 'sleeper effect'. That is, their benefits might only be evident after some period of time has elapsed. In the same way that a hip-replacement patient will be doing better several months after surgery than immediately postsurgically, it may be that people who have undergone certain psychoeducational interventions require a period of time 9for the benefits to become manifest. Assessing benefits only immediately at the conclusion of the intervention period might fail to reveal benefits that a longer follow-up would uncover. Although this proposition is reasonable in theory, there appears to be little evidence of enhanced intervention effectiveness with the passage of time, relative to the benefits achieved at the conclusion of an intervention programme. The opposite of a sleeper effect is equally possible: benefits that appear immediately after an intervention might not be maintained over time. Many interventions have not undergone sufficient follow-up scrutiny to resolve this issue. For those programmes that have, investigators have found that,

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with the passage of time, the effects they initially achieved appear to dissipate or become unstable (e.g. Bradley et al, 1987; O'Leary et al, 1988). Mechanisms of action For a programme to be maximally effective, its active therapeutic elements should be distinguishable from other parts of the intervention that do not affect outcome success. This is most easily accomplished when both the inputs (i.e. therapeutic activities) and outputs (i.e. variables assessed for change) are limited. In the case of certain biofeedback interventions, for example, very specific procedures have been applied with the goal of changing specific behaviours. The assessment then entails measuring the frequency, duration, or intensity of those behaviours. Because only a limited number of therapeutic procedures have been used in such studies, the range of possibilities for causes of observed changes is limited. In other studies that have incorporated numerous potentially effective components, ascription of any benefit to a specific element of the intervention is more difficult. Occasionally, this leads to a paradoxical situation: one may encounter two studies, one of which shows changes in more interesting outcomes for unspecified reasons while the other reports on outcomes of lesser import but can describe the change mechanisms more fully. Each only tells us part of the story in which we are interested. Personal characteristics The effectiveness of interventions may depend, in part, on the personal characteristics of participants. For example, individuals with a sense of self-efficacy may benefit more from an arthritis self-management programme, compared with those with less confidence. Knowing which participant characteristics are associated with greater effectiveness for various programmes can lead to a better match between certain interventions and specific population subgroups. Identifying characteristics that facilitate therapeutic gain also can highlight the need for new approaches to help those who do not benefit from currently available programmes. Although some researchers (e.g. Radojevic et al, 1992) discuss the role that personal characteristics may play in the changes they have sought, many others do not explore this issue in sufficient depth. Potentially, a greater understanding of how individual characteristics interact with programme elements could produce a higher yield of intervention successes. Time in illness Just as interventions might work differentially on people possessing different personal characteristics, they might also vary in effectiveness as a function of illness duration. For example, approaches that are especially effective during the earliest stages of rheumatoid arthritis, a period when the person is coming to grips with a host of new realities, might be very different from the optimal strategies for people with established illness. The studies

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discussed often report the average duration of rheumatic illness among their participants but there is little, if any, discussion of the suitability for various intervention components for persons at different temporal stages of the illness. Although it is obviously true that there are more people who have had arthritic diseases for some time than who are recently afflicted, it may be that the greatest reduction in disability can be achieved by aggressively intervening early. For example, learning how to cope effectively with the illness early on might provide people with skills that will serve them well for the remainder of their lives. Do the interventions work?

Taken as a whole, the available evidence suggests that psychological and educational interventions can provide substantial benefits to people with arthritis. These benefits are in addition to those achieved through appropriate medical care, including judicious use of medication. Published reviews (e.g. Lorig et al, 1987; Mullen et al, 1987; Buckelew and Parker, 1989) have generally concurred in reaching this conclusion. However, the data are less consistent than might be hoped. Lorig et al applied relatively lenient criteria in assessing the overall effectiveness of psychological and educational arthritis interventions. That is, they defined interventions quite broadly; placed little emphasis on methodological shortcomings of individual articles; and examined a wide range of intervention modalities, outcomes, and patient populations. The primary data they present are percentages of studies that succeeded in their attempts to achieve various outcomes. The resulting assessment is quite encouraging. They found that a large percentage of studies that attempted to change specific behaviour succeeded in doing so (e.g. 79% and 86% of the programmes successfully changed exercise and relaxation patterns, respectively); moderate to substantial proportions of studies reported success in changing psychological status (e.g. 53% success in changing depression) and health status (e.g. 66% for pain and 57% for global functional disability). Their computations did not account for the magnitude of the changes achieved nor the quality of the research designs. Mullen et al applied more rigorous meta-analytic techniques to address a similar issue. Whereas Lorig et al examined 76 studies, Mullen et al concentrated their efforts on 15 controlled studies from which data were available and for which effect sizes could be computed. They found the interventions reviewed to be modestly successful, achieving effect sizes equivalent to 16%, 22%, and 8% improvements in pain, depression, and disability, respectively. Buckelew and Parker (1989) qualitatively assessed different arthritis pain management intervention strategies by judging the rigour of experimental designs and the nature and magnitude of reported outcomes. They concluded that, while traditional educational programmes are of little value, self-help and cognitive-behavioural interventions can help patients to cope more effectively with arthritis pain. Our own assessment concurs with the implicit or explicit conclusion of these reviews, i.e. that cognitive-behavioural programmes are among the more successful interventions. However, these approaches still have

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important limitations. Among these is the failure to demonstrate that shortterm benefits endure beyond a few months. In addition, many of these interventions have concerned themselves primarily or exclusively with pain management: Although this is certainly an important manifestation of arthritis and a potential contributor to disability, it is not the only one. However, despite these limitations, cognitive-behavioural interventions are quite promising. They appear to be well accepted by patients, perhaps more so when coupled with procedures that underscore the physiological basis of arthritis symptoms. In addition, the outcomes they achieve can be linked to specific mechanisms of action. For example, increases in selfefficacy or problem-focused coping strategies have been invoked as mediating mechanisms. These interpretations are consistent with both the empirical data and a broader conceptual view of why these procedures should be effective. Is theory a path to intervention success?

The manner in which most cognitive-behavioural interventions arose may offer an insight into the development of other successful intervention models. Cognitive-behavioural interventions have built upon a substantial body of theoretical and empirical work in the behavioural sciences. That is, they have generally applied well established principles of learning and behaviour change to specific problems related to arthritis. In essence, the developers of these programmes appear to have asked themselves: 'What do I know about behaviour change and how can I apply that knowledge to arthritis?' In contrast, other interventions evolved by focusing first on the manifestations of the illness and then determining how to modify them. They seem to have grown out of the question: 'What do I know about arthritis and how can I change things?' Although both of these approaches appear equally valid and reasonable, interventions of the first type appear to have achieved greater success. In fact, some of the most promising developments in programmes that began with a self-management orientation are their insights into how established processes studied in the behavioural sciences could increase the effectiveness of their programmes. The application by O'Leary et al (1988) of self-efficacy theory is an obvious example. It is not necessarily our belief that all successful interventions must be grounded in behavioural science theory. Programmes that began with a deeper understanding of the patients and their problems than with the science of behaviour change have made important contributions. Arguably, the greatest insights might derive from maintaining a dual approach, with each group moving closer to the otller. Tha t is, programme developers grounded in basic methods and principles should revise and adapt their methods to be more specifically applicable to arthritis and those most familiar with the phenomenology of the illness should cultivate an appreciation for the role of existing theory as a guide to intervention refinement. Although we do not view behavioural science theory as the only path to successful interventions, we do believe that the existing data strongly point to the benefits of developing and broadening a fundamental understanding

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of how basic learning processes and behaviour change mechanisms operate in arthritis. The cognitive-behavioural approaches that have been applied in arthritis have made good use of knowledge concerning how people acquire and alter behaviour and how thinking processes affect acquisition and alteration of behaviour. We believe that similar attention to the role of individual, personal characteristics (including illness duration) and to emotional processes may have similar potential. Understanding how patients' personal styles, beliefs, preferences, and feelings influence--and are influenced b y - - t h e i r arthritis may help interveners to develop better interventions whose mechanisms of action are more fully understood and whose benefits are more enduring.

SUMMARY The extent of disability attributable to arthritis is briefly summarized and the World Health Organization's ( W H O ) classification scheme for progression from pathology to disability described. The types of outcomes that have been examined in evaluations of psychological and educational interventions aimed at preventing arthritis disability are described and classified according to the W H O scheme where appropriate. Next, the most common components included in psychological and educational interventions for arthritis are reviewed. These are (1) providing general information, (2) teaching illness self-management skills, (3) training in biofeedback, (4) applying cognitivebehavioural techniques, (5) using other psychotherapeutic techniques, and (6) enhancing social support. This is followed by a discussion of issues pertinent to assessing the efficacy of various intervention components, citing specific examples of intervention research. Finally, the conclusion that certain types of psychological interventions appear to be effective in mitigating arthritis disability is drawn and the contribution of social science theory to intervention efficacy acknowledged.

Acknowledgements Preparation of this chapter was facilitated by support from the United States Department of Health and Human Services, National Institutes of Health, Multipurpose Arthritis and Musculoskeletal Diseases Center Grant 5-P60-AR30701. The authors express their thanks to Shannon Smith and Wendy Stein for their assistance in preparing the manuscript.

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