Chapter 58 Cognitive behavioral approaches and neuropathic pain

Chapter 58 Cognitive behavioral approaches and neuropathic pain

Handbook of Clinical Neurology, Vol. 81 (3rd series) Pain F. Cervero, T.S. Jensen, Editors © 2006 Elsevier B.V. All rights reserved Chapter 58 Cogni...

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Handbook of Clinical Neurology, Vol. 81 (3rd series) Pain F. Cervero, T.S. Jensen, Editors © 2006 Elsevier B.V. All rights reserved

Chapter 58

Cognitive behavioral approaches and neuropathic pain H. CLARE DANIEL*,1 AND JOHANNES D. VAN DER MERWE 2 Department of Anaesthetics and Intensive Care, Imperial College, London, UK 2The RealHealth Institute, London, UK

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58.1. Introduction Although the prevalence of neuropathic pain in the United Kingdom is believed to be 1%, this may be an underestimate (Hempenstall and Rice, 2002) and it may be increasing. This increase may be attributable to the development of successful treatments for what were previously fatal medical conditions. This has had two implications. First, it has resulted in larger numbers of older people, a population who are known to be at risk of developing conditions associated with neuropathic pain (Gallagher, 2004). Second, although they increase a person’s lifespan, some of these treatments for conditions such as cancer and HIV result in damaged nerve tissue and neuropathic pain. Inevitably, this increase in neuropathic pain has cost implications for health care providers. Berger et al. (2004) studied a United States health insurance claims database. The financial costs in 1 year of 55,686 people with painful neuropathic disorders were compared with the same number of matched controlled subjects who also had medical encounters in the same year, but not for painful neuropathic disorders. The health care costs for those with painful neuropathic disorders were three times greater than the matched controlled subjects. Unfortunately, this increase in the prevalence of neuropathic pain and the associated high costs are accompanied by difficulties in treating this condition. Pharmacotherapy is the most common method; the available evidence supports the use of tricyclic antidepressants and antiepileptic drugs (Hempenstall and Rice, 2002). However, many people do not receive drugs that may reduce their pain (Harden and Cohen, 2003), some avoid taking them due to their side effects and concerns about the drugs (Breitart et al., 1998), and if they are taken they fail to

achieve adequate or satisfactory pain relief in a high proportion of patients. Even if pharmacotherapy reduces pain by the 30% required to reach clinical significance, improvements in quality of life as a result of pharmacotherapy are less consistent (Dworkin et al., 2003). This increase in prevalence, the high costs of treatment and the absence of a single treatment that adequately controls neuropathic pain have led to an increasing recognition that medical interventions for neuropathic pain should be considered as part of a multi-faceted intervention delivered by a multi-disciplinary team (Scadding, 2004). A principal multi-disciplinary approach to chronic pain is that of cognitive behavioral pain management programs. However, the focus of these programs has been on nociceptive rather than neuropathic pain. This chapter discusses why people with pain suffer and, with the emphasis on pain management programs, how cognitive behavioral interventions can help reduce this suffering. The focus then narrows to neuropathic pain. First, the outcome literature for cognitive behavioral interventions and neuropathic pain is reviewed. Second, the similarities between the impact of nociceptive and neuropathic pain is discussed. This is followed by a discussion regarding the possible differences and the implications these may have for cognitive behavioral interventions for neuropathic pain. Finally, the assessment of outcome is considered. 58.2. Understanding pain and suffering 58.2.1. The biopsychosocial approach Many people with persistent pain describe the pervasive and negative impact it has on them and their lives. Although biomedical factors may have initiated a

*Correspondence to: H. Clare Daniel, Department of Anaesthetics and Intensive Care, Imperial College London, Chelsea and Westminster Campus, 369 Fulham Road, London SW10 9NH, UK. Email: [email protected], Tel: +44-(0)20-8746-8188, Fax: +44-(0)20-8237-5109.

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patient’s original report of pain and their difficulties, over time these play a lesser role in the extent of people’s disability (Turk and Monarch, 2002). It is the biological, psychological and social effects that are secondary to chronic pain that can maintain the difficulties people describe. These effects include low mood, fear about the pain not resolving or becoming worse, avoidance of activity, beliefs about personal control and self-efficacy, decreased fitness, withdrawal from social activities, loss of employment and isolation. Because these “biopsychosocial” consequences play a primary role in the long-term pain experience, the biopsychosocial approach is the prevailing model used to understand the difficulties experienced by people who suffer with chronic pain (Jensen et al., 2002). By acknowledging that, in addition to biological factors, psychological and social factors influence pain, adaptation and functioning, the biopsychosocial approach helps the development of a comprehensive understanding of the person and their pain and guides appropriate interventions. 58.2.2. The “3 Is” framework Morley and Eccleston (2004) have developed the “3 Is” framework to help broaden our understanding of the range of “feared objects” of people with pain and the impact this has on them and their life. The framework suggests that pain has the ability to be disruptive in three ways. First, because it competes for and dominates attention and increases hyper-vigilance, pain has the capacity to momentarily interrupt tasks and activities. It also elicits cognitive activity that is often negative in content, which in itself interrupts behavior. Second, if the interruption is brief most people manage to continue with the activity, but if interruptions are frequent the pain’s ability to disrupt and interfere increases. This may mean that tasks cannot be completed or if they are, this may not be to the standards hoped for by the person with pain or by people around them. It is because pain occurs within a person’s dynamic developmental context that it will interfere with tasks that are necessary to fulfill major goals and identities. Interference on this level can be pervasive across people’s lives, affecting cognitive processes, mood and occupational and social functioning and threatening their perceived present or future identity. This framework can help us understand the detrimental impact of pain that is reported by so many people. They express anxieties and fears about their health and increases in pain in part because of their hyper-vigilance to somatic symptoms. They report frustration because of the difficulty or inability to reach their goals. If unable to reach their goals, the subsequent lack of achievement may result in low mood or depression, and an inability

to fulfill major goals may threaten their identity or sense of self. 58.3. Psychological interventions for chronic pain In the 1970s there was a proliferation of research that focused on psychologically based interventions for chronic pain. The seminal work by Fordyce et al. (1973) describes operant behavioral analysis and the behavioral sequelae of chronic pain. The central tenet of the operant model explains the reinforcement and maintenance of people’s unhelpful behavioral responses to pain. For example, someone with leg pain may develop a limp. This is reinforced in the short term by less pain and so the limp continues. However, in the long term such behaviors are unhelpful and contribute to the development and maintenance of many of the secondary difficulties experienced by people with chronic pain. For example, the limp may result in poor posture, pain in other parts of the body, muscle weakening in the painful leg, decreased activity, lowered levels of fitness and reduced social interactions, all of which may contribute to increased distress. Operant interventions for chronic pain focus on these unhelpful responses to pain, seeking to alter the contingencies of reinforcement and helping people to develop helpful behaviors that reduce their disability and distress. Biofeedback and relaxation strategies were later incorporated into these interventions. The more recent addition of cognitive theory has resulted in the cognitive behavioral interventions for chronic pain as they currently stand. Cognitive theory as applied to pain suggests that people’s idiosyncratic beliefs and thoughts about their pain and situation influence their response to their pain and the level and type of distress. Cognitive interventions aim to help change unhelpful cognitive and behavioral responses to pain by encouraging people to address and re-evaluate their beliefs and the meanings they hold about the pain, their expectations of selfefficacy and their everyday cognitions about their pain and situation. Cognitive behavioral interventions for chronic pain are typically delivered as pain management programs in a group format and by a multidisciplinary team. Although wide variations in the content of these interventions exist across services (Morley et al., 1999), the main aims of these interventions are to: ●

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Improve the person’s understanding of their persistent pain condition Reduce pain related distress Improve physical functioning and reduce disability Return to valued activities Review and reduce medication Develop ways to manage increases in pain

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58.3.1. Improving the person’s understanding of their persistent pain condition Education is an important element of cognitive behavioral pain management interventions. People often respond to chronic pain as they would to acute pain. They therefore protect painful areas by avoiding activity and resting for prolonged periods in the hope that healing will take place and the pain will reduce. Learning about the differences between acute and chronic pain and the deleterious effects of responding to chronic pain as if it were acute helps people to understand their current situation and the need to change their responses. 58.3.2. Reducing pain related distress People’s beliefs and thoughts about themselves and their pain, for example “What’s the point in trying, it always hurts and I never succeed”, can contribute to increased distress, reinforce unhelpful behaviors and reduce quality of life (Crombez et al., 1999b; Lamé et al., 2005). Cognitive behavioral interventions help people to recognize the influence of unhelpful beliefs and thoughts on mood, behavior and their situation. People are encouraged to re-evaluate these, particularly their thoughts about the meaning of the pain, ongoing damage, and their ability to manage and adapt to their situation. This often needs to be in association with people engaging in activities that will provide them with experiences that do not fit with their unhelpful thoughts and beliefs and therefore will help them to develop an alternative and more helpful perspective (de Jong et al., 2005). 58.3.3. Improving physical functioning and reduce disability People’s new knowledge about chronic pain and the influence of their beliefs on their behavior is combined with learning about basic anatomy and physiology, in particular that healing has occurred and rest does not resolve chronic pain. This helps people to engage in stretch and exercise that will help them to improve their physical function and achieve their goals. 58.3.4. Returning to valued activities People with pain often relinquish activities that once provided them with a sense of achievement and/or enjoyment. Reasons for this include fear of pain and injury resulting in avoidance of activity, pain having often resulted in an inability to reach goals, resulting in disappointment and a sense of failure, and the necessity of having to channel all available energy into activities such as employment. Personal goal setting of valued activities is an important

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aspect of cognitive behavioral interventions. Patients are encouraged to set realistic goals and consider the steps they need to achieve if they are to reach their goals. The team support the patients in developing problem solving skills to help them consider ways in which they may overcome obstacles to these goals. 58.3.5. Reviewing and reducing medication The majority of people with chronic pain have tried numerous medications in the hope of decreasing the intensity of their pain. Many state that medication “only takes the edge off” the pain and some state that the side effects (such as dry mouth, sedation, gastrointestinal problems) outweigh the benefits they derive from their medication. However, some people are reluctant to decrease their medication for fear of the pain increasing and of them not being able to manage. Patients are helped to understand their medication, given advice about taking their medication in a time rather than pain contingent fashion, and support with reducing their medication should this be a goal. 58.3.6. Developing ways to manage increases in pain Before coming to pain management programs many people respond to increases in their pain by using medication and rest. Cognitive behavioral pain management helps people to understand the disadvantages of these responses and encourages them to consider, attempt and evaluate alternative strategies during these times to help them break their association between increased pain and decreased activity. It is important to help people elicit, test out and challenge their cognitions regarding the consequences of an increase in pain level, for example, “I will lose control”; “I cannot cope”; “I am going to be sick”; and “I will faint in public”. 58.4. Evidence for cognitive behavioral interventions: nociceptive and neuropathic pain There are currently around 40 published randomized controlled trials that assess the efficacy of cognitive behavioral interventions for chronic pain (Morley, 2004). Compared with waiting list controls, cognitive behavioral interventions are more effective in restoring function, improving mood and reducing disability and unhelpful pain related behaviors (Morley et al., 1999). Compared with a range of heterogenous interventions (such as those provided by pain clinics, physiotherapy, occupational therapy and educational packages) cognitive–behavioral interventions produce significantly greater changes in pain experience (intensity, unpleasantness and sensation), improved cognitive strategies to manage pain and

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reduced behavioral expression of pain (Morley et al., 1999). McCracken and Turk (2002) who, in addition, report an overall decrease in health care costs and an increased chance of returning to work, support these findings. There are very few methodologically sound evidencebased studies specifically evaluating cognitive behavioral interventions for neuropathic pain. The majority of the outcome studies reviewed in the most recent meta-analysis of cognitive behavioral interventions for chronic pain include people with nociceptive pain or pain of mixed aetiologies. Very few had solely neuropathic pain (Morley et al., 1999). The studies that have evaluated these interventions for neuropathic pain have tended to address the HIV population. Evans and Fishman (1997) developed and investigated the efficacy of “pain management training” for people with HIVrelated peripheral neuropathic pain. Their description suggests that the intervention is similar to that currently employed in pain management programs. However, as this was not an empirical study it is difficult to draw conclusions about the effectiveness of this intervention. A randomized control trial compared cognitive behavior therapy with supportive psychotherapy for people with HIV-related peripheral neuropathic pain (Evans et al., 2003a). Both groups reported a significant improvement in pain-related interference. However, the improvement occurred across more domains in the cognitive behavioral group, who also reported a significantly greater improvement in symptoms of depression and several of the subscales of the Brief Pain Inventory (Daut et al., 1983). Both groups reported a significant reduction in pain intensity, although neither group altered their analgesic use. Unfortunately, the authors do not describe the content of the interventions, which again makes it difficult to draw conclusions about the effectiveness of cognitive behavioral interventions for this population. In addition, there was a high attrition rate in this study. Sixteen (57%) of the 28 people assigned to the cognitive behavioral group, and 12 (36%) of the 33 assigned to the supportive psychotherapy group dropped out before completing the 6 week treatment. No differences were found in the physical symptoms (CD4 counts, viral loads, and infections) between those who did and those who did not complete the intervention. However, the latter group had significantly greater scores on the Hamilton Depression Scale (Hamilton, 1967), which a subsequent study showed to be predictive of attrition (Davis et al., 2004). The high rate of attrition raises questions about the acceptability of current cognitive behavioral interventions for people with HIV-related peripheral neuropathic pain. Markowitz et al. (1998) postulate that this unacceptability is related to cognitive behavioral approaches being less helpful for people who

have objectively negative life events. However, this is contrary to the work addressing cognitive techniques in adverse life circumstances (Moorey, 1996). 58.5. The need for cognitive behavioral interventions for neuropathic pain At present, when people with neuropathic pain enter a cognitive behavioral pain management program they receive an intervention that is validated by research on nociceptive pain (Evans and Fishman, 1997). In other words, they are fitted to the intervention rather than the intervention being fitted to their needs. In order to decide whether we need a cognitive behavioral intervention for neuropathic pain that differs from current cognitive behavioral pain management programs, it is necessary to understand the impact of neuropathic pain and the needs of this population. The impact of nociceptive pain on physical and psychological quality of life is well documented (Eccleston, 2001; Vlaeyen et al., 2002). However, little is known about the impact of neuropathic pain and the implications for cognitive behavioral interventions (Dworkin et al., 2001). The impact of neuropathic pain may indeed be the same as nociceptive pain. However, it may differ significantly or there may be additional effects of neuropathic pain. This population may have different needs and goals and may require an intervention that is tailored to these needs and goals. 58.6. The impact of nociceptive and neuropathic pain 58.6.1. Similarities between nociceptive and neuropathic pain 58.6.1.1. Quality of life and interference There are indications that neuropathic pain is associated with a reduced quality of life. One study found that people with peripheral neuropathic pain of mixed etiologies had a significantly impaired quality of life on all eight domains of the Short Form Health Survey (SF-36) (Ware et al., 1993) and all six dimensions of the Nottingham Health Profile (NHP) (Hunt et al., 1986) when compared with the general population (MeyerRosberg et al., 2001). Another study, also using the NHP, reported that people with painful diabetic neuropathy reported a significantly lower quality of life on five of the six domains of the NHP (emotional reaction, energy, pain, physical mobility and sleep) than people with diabetes but no pain and nondiabetic controls (Benbow et al., 1998). A reduced quality of life has also been reported for people with an amputated limb and phantom limb pain when compared with a group of people with an amputated limb but no pain. Those with pain reported a significantly lower quality of life on the

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domains of the RAND-36 (Hays et al., 1993) that assess role limitations due to emotional functioning, vitality, pain and general health perception (van der Schans et al., 2002). This study suggests that walking distance and stump pain are the two most important predictors of health related quality of life in this population. Using a modified version of the Brief Pain Inventory, Galer et al. (2000a,b) assessed pain interference associated with painful diabetic polyneuropathy and chronic regional pain syndrome (CRPS). The modification consisted of the addition of three sub-scales assessing self-care, recreational activities and social activities. On each of the ten sub-scales at least 35% of people with painful diabetic polyneuropathy indicated that their pain resulted in “substantial interference” (defined as a score equal to or greater than 5 on a 0–10 rating scale) (Galer et al., 2000a). The greatest level of interference being on the domains of sleep (mean score 5.38, SD 3.25) and enjoyment of life (mean score 5.00, SD 2.89). This can be compared with the CRPS study (Galer et al., 2000b) in which at least 64% of participants with CRPS stated that their symptoms caused “substantial interference” on nine of the ten domains assessed (self-care being the exception). The greatest level of interference was reported on the sub-scales assessing recreational activities (mean score 7.32, SD 3.31) and enjoyment of life (mean score 6.94, SD 3.34). Although one study suggested that people with postherpetic neuralgia (PHN) report a lower level of pain related interference when compared with a group of people with heterogeneous chronic pain (Haythornthwaite et al., 2003), this condition has also shown to be associated with curtailment of social activities and interference with self-care, mobility and general activities of daily living (Schmader, 2002). The above studies therefore suggest that a variety of neuropathic pain conditions have a significant and wide ranging detrimental impact on people and the quality of their lives, including the aspects presented within the biopsychosocial perspective. 58.6.1.2. Mood and distress There are comparatively few studies on neuropathic pain and mood when compared with nociceptive pain. However, it has been suggested that an association exists between depression and neuropathic pain (Breitbart et al., 1991) and that rates of depression do not differ significantly from those of nociceptive pain (Haythornthwaite and Benrud-Larson, 2001). HIV or HIV and AIDSrelated pain is often associated with significant psychological distress including depression (Evans et al., 2003a). Breitbart et al. (1991) reported that 40% of their HIV positive population who had pain reported suicidal ideation, compared with 20% of those who did not have pain.

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Rosenfeld et al. (1996) reported that their population of people with AIDS-related pain had an average score of 17.64 on the Beck Depression Inventory (Beck et al., 1961) after removing the somatic items to prevent them from confounding the total score. Fifty-four percent reported “high distress” and more than 30% indicated some degree of suicidal ideation. After controlling for the influence of social and demographic variables, pain was related to psychological distress, symptoms of depression, hopelessness and reduced quality of life. Twenty percent of a population with PHN involved in a clinical trial were diagnosed with major depression (Clark et al., 2000). There are surprisingly few reports on the prevalence of depression in people with painful diabetic neuropathy, the main focus of the work being on overall quality of life (Benbow et al., 1998; Galer et al., 2000a). However, it is thought that the rate of depression in the diabetic population is higher than in the general population (Kapur, 2003). There has been even less work focusing on anxiety disorders. Pain in HIV has been associated with posttraumatic stress disorder (PTSD) (Smith et al., 2002) and in a similar population Tsao et al. (2004) found that PTSD and panic disorder were significant predictors of increased pain scores. One study reported that 17% of a PHN population met the diagnostic criteria for generalized anxiety disorder, and 3% for panic disorder (Clark et al., 2000). Although the results of studies are mixed, it has been suggested that people with phantom limb pain following an amputation report significantly more anxiety than those who do not experience pain (Sherman et al., 1984). 58.6.1.3. Neuropathic pain and the biopsychosocial model Some studies suggest that the biopsychosocial model of pain can be applied to neuropathic pain. Jensen et al. (2002) studied 61 people with phantom limb pain at 1 and 6 months following a lower limb amputation. At 1 month psychosocial variables, particularly catastrophizing (a process whereby we focus on a threat, amplify the value of the threat, and minimize our ability to deal with it) and the use of rest as a means of coping with pain, contributed to 43% of the variance of pain intensity and 28% of interference due to pain (after controlling for pain intensity). Twenty-eight percent of depressed mood could be accounted for by pain intensity and 46% by psychosocial variables, especially catastrophizing. Attempts to identify the predictors of change from 1 to 6 months suggested that lower levels of solicitousness from others and higher levels of social support and catastrophizing were associated with improvements in pain interference and symptoms of depression. With the exception of catastrophizing, this

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fits with the research on nociceptive pain. Similarly, Hanley et al. (2004) found that pain interference at 12 months following a limb amputation was not explained by resting as a means of coping at 1 month, but by high levels of perceived social support and lower levels of solicitous responses from significant others. Changes in depression from 1 to 12 months were explained by catastrophizing, but unlike the findings of Jensen et al. (2002) catastrophizing did not explain changes in interference. Analyses at 24 months following the amputation reflected similar findings, the main difference being that catastrophizing at 1 month made a significant independent contribution to the prediction of change in pain interference at 24 months. These results can be compared with those of Whyte and Carroll (2004) who found that, after controlling for pain intensity and duration, catastrophizing accounted for 6% of the variance in the scores on the physical scale and 12.5% of the variance in the scores on the psychosocial scale of the Sickness Impact Profile (SIP) (Bergner et al., 1981). Catastrophizing is also thought to play a role in the experience of PHN. Although reporting lower levels of catastrophizing than a group of people with limb amputations, it was a significant predictor of pain in this population 8 weeks later (Haythornthwaite et al., 2003). Interference due to pain at 8 weeks was predicted by baseline interference and increasing activity as coping strategy used in response to pain. Depressed mood was predicted by baseline depressed mood, interference, overall activity level and ignoring pain sensations. Although not predictive, similar associations were found in a population of people with HIV-related peripheral neuropathic pain (Evans et al., 2003b). Rather than pain intensity and interference with functioning being associated with measures of physical health, they significantly correlated with symptoms of depression, anxiety, somatization, overall distress, catastrophizing and negative thought content. Unhelpful cognitions are instrumental factors in the adjustment of chronic pain (Stroud et al., 2000). Negative self-statements, such as “I am useless” are thought to be associated with low self-efficacy and catastrophizing and have a detrimental effect on the experience of chronic pain (Haythornthwaite et al., 2001; Jensen et al., 2001; Turner et al., 2002). This relationship is thought to exist in neuropathic pain. Evans et al. (2003b) used the Inventory of Negative Thoughts in Response to Pain (INTRP) to assess negative selfstatements, negative social cognitions and self-blame in people with HIV-related peripheral neuropathic pain. They found that negative self-statements and negative social cognitions (but not self-blame) were associated with pain intensity. All the sub-scales of the INTRP were significantly associated with pain interference

and distress. Thirty-five percent of pain interference could be accounted for by negative cognitions (after controlling for age, education, pain frequency and viral load), with self-blame making a significantly independent contribution. In addition, negative cognitions account for 44% of the variance of distress (with negative selfstatements making a significant independent contribution) and 43% of the variance for symptoms (with negative social cognitions making a significant independent contribution). The above studies illustrate the interaction between the biological, psychological and social components of the experience of neuropathic pain. Although differing in predictive values across sub-groups of neuropathic pain, psychosocial variables, particularly catastrophizing, contribute to the variance of pain intensity, pain interference and depressed mood. A correlation between unhelpful cognitions and pain intensity, pain interference and distress in people with HIV-related peripheral neuropathic pain is also indicated. 58.6.2. Differences between nociceptive and neuropathic pain Although similarities exist between nociceptive and neuropathic pain, there may be distinct differences pertaining to their impact that have not yet been adequately addressed. If significant differences do exist, these may have implications for the delivery and content of cognitive behavioral interventions. Some of the possible differences are discussed below. 58.6.2.1. The route to diagnosis The route to diagnosis and appropriate interventions for both nociceptive and neuropathic pain is fraught with difficulties. These difficulties increase the adversity of the experience of pain and may be precursors to psychological distress (Harden and Cohen, 2003). What is often different between neuropathic and nociceptive pain is that many people with neuropathic pain are given a diagnosis and some are able to develop a clear understanding about why they have pain. In contrast, many with nociceptive pain are not given a diagnosis or receive conflicting diagnoses, which can result in frustration, anger and confusion. Smith et al. (2004) postulate that having an identifiable cause may be a contributing factor to the finding that people with neuropathic pain were less likely to report current suicidal ideation (either active or passive) when compared with people with nociceptive pain. However, a significant number of people with neuropathic pain are still misdiagnosed, receive a false positive diagnosis and/or wait for a long time before being given a diagnosis and appropriate treatment. For example, Davis et al. (1994) reported that 79% of 703 people

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with neuropathic pain had been experiencing pain for more than a year before referral to a pain clinic. Harden and Cohen (2003) suggest that it may be because many neuropathic pains are secondary to conditions treated in services where pain specialists are generally absent that is contributing to these difficulties. On the route to diagnosis, people with chronic pain can struggle to have their symptoms and distress taken seriously by some healthcare professionals. When their symptoms cannot be fully explained by objective physical findings patients can unhelpfully be told that their symptoms are “psychological”. The distress caused by not having their symptoms taken seriously and receiving this label can increase the distressing experience of pain, which in turn may be misinterpreted by clinicians and reinforce their belief that the pain is psychological in origin. This has particularly occurred in relation to CRPS and it is only relatively recently that this condition may be losing the “psychogenic” label (Ciccone, 1997; Nelson, 2002). 58.6.2.2. The concept of damage Beliefs and fears about pain and damage are associated with avoidance, a reduced quality of life and the secondary disabling consequences of chronic pain (Crombez et al., 1999; Vlaeyen and Linton, 2000; Lamé et al., 2005). A central tenet of cognitive behavioral interventions for chronic pain is to help the patient understand that, for the majority of chronic pain sufferers, pain is not due to ongoing damage. People are encouraged to loosen their association between the two concepts and become more confident in their body and its ability to increase in function despite their pain. However, in the case of neuropathic pain a slightly different relationship exists between pain and damage. It may be because some neuropathic pains are, in simple terms, a result of “nerve damage” that healthcare professionals use this term in an attempt to help patients understand their pain. Whilst it is understandable why this term is used, it may be reinforcing people’s anxieties about damage and maintaining their unhelpful responses to their pain, such as rest and a search for an intervention to heal this damage. The literature has not explored how understanding neuropathic pain in terms of “nerve damage” impacts on people’s responses and adaptation to the pain, or explored effective ways to help people increase their function despite this damage. This may have implications for the content of pain management programs, which currently emphasize the absence of damage. 58.6.2.3. Physical sensations associated with neuropathic pain The basic science and medical fields accept that the sensations reported by people with neuropathic pain differ

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from those with nociceptive pain. Descriptors such as shooting, burning, stabbing and electric shock are associated with neuropathic pain and are used to aid diagnosis. However, the literature rarely addresses whether these sensations have a specific impact or implications for the content and efficacy of current cognitive behavioral pain management interventions. For example, “pacing” is a technique that encourages time rather than pain contingent activity. At its most stringent, pacing involves the patient finding their “tolerance” for an activity (such as ironing) or a position (such as sitting) by establishing how many minutes they are able to engage in this activity/position without increasing their pain. They then adhere to this tolerance, using short breaks to intersperse each tolerance. Over time the tolerance is gradually increased. Although the efficacy of pacing requires further investigation, in the clinical setting many patients benefit from this intervention. However, those with neuropathic pain often say that although they understand the concept of pacing “it doesn’t make sense” when they try and apply it to their unpredictable pain. The applicability of time contingent rather than pain contingent activity to a stimulusindependent neuropathic pain that “shoots” or “stabs” and cannot be anticipated or ignored is questionable and has not been addressed. If we study pacing and neuropathic pain we may find that cognitive behavioral interventions require adaptation and need to take the stance that the unpredictable nature of some neuropathic pains has such a capacity to interrupt that there will be times when it inevitably dictates activity. Some neuropathic pains can, of course, be stimulus evoked. Such pains are triggered by external mechanical, thermal or chemical stimuli and are associated with allodynia, defined as “pain due to a stimulus which does not normally provoke pain” (Merskey and Bogduk, 1994) and hyperalgesia, defined as “an increased response to a stimulus which is normally painful” (Merskey and Bogduk, 1994). These phenomena can result in many day-to-day activities being painful and aversive. Wearing clothes against the skin, gentle touch or being in windy or cold environments can result in increased pain. A common response is to avoid these stimuli. For example, people feel forced to wear loose clothing or shorts rather than skirts, avoid activities that are outdoors or that increase the risk of being touched. These responses can have secondary effects such as poor body image, isolation and distress. There has been little evaluation of the implications for and efficacy of cognitive behavioral interventions for these aspects of neuropathic pain. In addition to pain, abnormal or unpleasant sensations such as itching, loss of sensation, pins and needles and tingling are associated with neuropathic pain.

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Again, little attention has been given to these symptoms and the role of cognitive behavioral interventions. For example, reported descriptions such as “worms between her toes”, “spikes and a tight iron band clamped around her foot” and “raw liver transforming into a furry creature as the pain intensifies” (Rybarczyk et al., 2004) may trigger distressing images, which may need addressing if someone is to begin to adapt to their pain. 58.6.2.4. Reduction of medication Unsatisfactory pain relief and the presence of side effects are reasons commonly cited for wanting to reduce medication, which is an aim of many cognitive behavioral pain management programs. However, there have been suggestions that pharmacological interventions are more effective for neuropathic than nociceptive pain and may reduce the pain’s severity by up to 50% and, if titrated gradually, are accompanied by few side effects. Cognitive behavioral pain management programs for neuropathic pain may need to consider ways to develop an intervention that combines established pain management techniques with optimal use of pharmacology. 58.6.2.5. Co-morbid problems A major difference between nociceptive and neuropathic pain is that the latter is often associated with health conditions and difficulties that, even in the absence of pain, can cause distress and/or disability. Although detailed discussions of these problems are not within the scope of this chapter, some are briefly outlined below. 58.6.2.5.1. Diabetes. Problems associated with diabetic neuropathy include a reduction or loss of sensation in the feet, in some cases the hands, and weakness in the feet that may lead to foot injuries. Nerve damage associated with diabetic neuropathy may also result in “dysfunction of the visceral and reproductive organs resulting in indigestion, diarrhea or constipation, dizziness, bladder infections and impotence” (Marchettini, 2004). Other co-morbid conditions include ischemic heart disease, cerebrovascular disease, peripheral vascular disease and ulcerations, the latter two having a detrimental impact on mobility (Benbow et al., 1998) and can lead to amputation. 58.6.2.5.2. Cancer. Despite improvements in treatment, even in the absence of pain, the meaning of cancer is often associated with death and pain (Monroe, 2003), which can, of course, result in increased distress. There has been little focus on the cognitions of people with cancer- related pain. However, de Wit et al. (2001) suggest that this population catastrophize less about their pain and that pain cognitions in general have a different

emphasis in people with cancer pain when compared with people with nonmalignant pain. The meaning of the pain for the person experiencing it may be very different from nonmalignant pain (Strong and Bennett, 2002). For example, they may believe that a change in pain indicates disease progression. The family influences many aspects of the pain experience and for those with cancer pain there may be an additional effect. Studies have suggested that the patient’s concern about the family’s future is associated with distress (Heaven and Maguire, 1998) and pain (Strang, 1997). 58.6.2.5.3. HIV/AIDS. People with HIV/AIDS often have to contend with “an intertwined set of disease specific psychological, social and medical stressors” which in themselves can result in depression and anxiety (Stein Marcus et al., 2000). These can include feelings of guilt, seeing close friends suffer and die, fatigue, social stigmatization, discrimination and the harsh side effects of necessary medication. The mode of transmission of the HIV virus is also associated with distress. Injection-drug users report a significantly greater level of global distress, more physical and psychological symptoms and significantly greater distress concerning these symptoms than those who had the virus transmitted via homosexual or heterosexual contact (Vogel et al., 1999). 58.6.2.5.4. Torture. Neuropathic pain is a common result of certain torture methods and although the figures differ, it is thought that about 5–30% of people seeking asylum have been tortured (Burnett and Peel, 2001). Unfortunately, although most torture survivors present with predominantly physical or somatic symptoms – pain, fatigue, weakness and sleep problems (Thomsen et al., 2000) – there can be an overemphasis on the importance of the psychological aspects, which can result in the insufficient diagnosis and treatment of somatic pain (Thomsen et al., 2000), or an overdiagnosis of psychosomatic pain. However, this is not to negate the distress suffered by this population. Amris and Prip (2000) point out that the pain of survivors of torture is presented in combination with a complex picture of physical, mental and social problems, all of which can have a detrimental effect on overcoming distress and psychological problems (Williams, 2003). People who have been tortured can present with symptoms of anxiety, depression, guilt and shame (Burnett, 1999). Some believe that a high co-morbidity exists between chronic pain and post-traumatic stress disorder following traumatic events (Sharp and Harvey, 2001). The experience of persistent pain with PTSD tends to feed into each other, with the pain triggering flashbacks and memories of the trauma while the symptoms of

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PTSD aggravate the pain. This vicious cycle is quite often difficult to break. As the number of people fleeing from the persecution of their home countries and seeking asylum in others is increasing (Thomsen et al., 2000), clinicians in pain services are increasingly likely to work with this population. Their complex picture described above needs to be considered in any intervention for these people who may require a specific combination of interdisciplinary biological, psychological and social interventions to help address the physical problems, psychological consequences and social problems that follow torture. 58.6.2.5.5. Limb amputation. Studies that have addressed the difficulties associated with limb amputations show mixed results. For example, even in the absence of pain, some suggest that the risk of depression following an amputation does not diminish with time (Rybarczyk et al., 2004). However, others write that the prevalence of depression is higher in the first 2 years, following which the rates are comparable with the general population (Horgan and MacLachlan, 2004). Depression immediately following an amputation may be associated with a decreased use of a prosthesis and in the long-term with activity restriction, feelings of vulnerability and a perceived poor health status (Horgan and MacLachlan, 2004). Although few studies have questioned whether the cause of an amputation is associated with subsequent distress and adaptation, Ferguson et al. (2004) suggest that it may have implications for the focus of intervention. For example, their research with people who survived a landmine attack found that social and economic integration are paramount in facilitating recovery from this traumatic event. It is unclear whether the level of amputation of the limb is a significant factor in how people respond to the amputation (Pucher et al., 1999; van der Schans et al., 2002). There are also conflicting findings regarding whether the timing of an amputation (primary compared with delayed) affects adjustment (Lerner et al., 1991), quality of life (Fairhurst, 1994) or body image (Pucher et al., 1999). Horgan and MacLachlan (2004) suggest that body image anxiety in this population is associated with depression, poor quality of life, lower self-esteem and higher anxiety. Difficulties in adapting to the change in body image are thought to be a significant factor in reduced libido following an amputation (Buckwalter et al., 1982). 58.6.2.5.6. Chronic regional pain syndrome. Chronic regional pain syndrome (CRPS) is associated with trophic changes that affect nails, hair and skin. Galer et al. (2000b) report that 90% of those with CRPS report swelling, 74% report skin color changes and 74% feel

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disconnected to the affected part of their body. Despite the prevalence of these symptoms, there has been very little research on body image in this population, which if found to be a significant problem, may need to be addressed during cognitive behavioral interventions. In summary, these co-morbid problems pose questions for cognitive behavioral pain management interventions. If these people also experience neuropathic pain, their care is often split between a pain service and a service (or services) that focus on their other difficulties. This can result in a lack of integrated care, which, given the evidence for the biopsychosocial approach, may contribute to the maintenance of some of their difficulties. It is not realistic to expect the team who are providing cognitive behavioral interventions to intervene in the treatment of all co-morbid problems. However, it may be realistic to expect them to (1) have a sound knowledge of these problems and their potential impact on the pain experience; (2) be able to adapt the interventions to account for these co-morbid problems; and (3) ensure effective communication and sharing of knowledge between the teams involved. 58.7. Assessment of outcome The importance of assessing the efficacy of any intervention is well documented. Until the end of the last decade, outcome measures in drug trials focused on pain intensity and neglected quality of life (MeyerRosberg et al., 2001). Fortunately this is now changing and is reflected in the recent European Federation of Neurological Societies’ guidelines on neuropathic pain assessment (Cruccu et al., 2004), which suggest assessing mood, functional capacity, quality of life and sleep. Regarding the assessment of the efficacy of cognitive behavioral interventions for chronic pain, neuropathic pain has again received less attention in this area. There are very few assessment and outcome measures specific to neuropathic pain. The majority of those that are specific to this problem assess physical symptoms, help the clinician differentiate non-neuropathic from neuropathic pain and identify subgroups of neuropathic pain (Galer and Jensen, 1997; Bennett, 2001; Krause and Backonja, 2003; Bouhassira et al., 2004). Although these measures may capture pain quality, they do not address many determinants of outcome. Rowbotham (2002) argues that because patients come for treatment to improve their quality of life (QoL) we should be assessing this as major outcome. Examples of healthrelated QoL measures include the Sickness Impact Profile (Bergner et al., 1981), the Short Form Health Survey (SF-36) (Ware et al., 1993) and the Nottingham Health Profile (Hunt et al., 1986). They provide a broad picture across a range of dimensions, for example physical

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and social functioning, emotion, pain, sleep and energy. Although they have the advantage of being one measure (as opposed to the patient having to complete a battery of measures), there are problems associated with their use. First, these generic measures may not capture the specific problems posed by neuropathic pain. Second, the ability of some to pick up subtle yet important improvement and deterioration has been questioned. Third, there is sparse information available on their psychometric properties for use with people with neuropathic pain (Meyer-Rosberg et al., 2001). Finally, although they assess a broad range of domains, many are not comprehensive and, for example, may not assess sleep, often a significant problem reported by people with neuropathic pain. Some argue that using disease specific measures is important when assessing QoL (Vilekyte et al., 2004). For example, Vilekyte et al. (2004) suggests that the NeuroQoL (Vilekyte et al., 2003), which is a QoL measure specifically for people with diabetic neuropathy, demonstrates strong associations with clinical indicators of neuropathic severity and captures the aspects of neuropathy that influence QoL. However, when Hirsch et al. (2000) compared five QoL questionnaires (three of which were specifically for people with diabetes) using a type 2 diabetes population, they concluded that “no single questionnaire covered all relevant aspects of the QoL”. The less generic measures that assess one outcome domain, such as symptoms of depression or anxiety are often used in the neuropathic pain literature. However, similar problems exist when using these measures. There has been little work focusing on the validity and reliability for their use with the neuropathic pain population. A reason often cited for their use is that they are “commonly used” in other studies. Although this may allow comparisons to be made across studies, knowing about their psychometric properties for use with this population will help to make these comparisons clinically useful. 58.8. The way forward Turk and Okifuji (2001) write that we are adopting the “patient uniformity myth” with the result that all patients with pain are receiving the same intervention. Although research has suggested that cognitive behavioral interventions for chronic pain are effective (Morley et al., 1999), there are some people who make limited or no changes following these interventions. Suggestions to improve treatment effectiveness include matching patients with specific characteristics, problems and needs to specific treatments. Tailoring interventions to patients and their needs is a fundamental principle in

the wider cognitive behavioral literature. Although this is harder to achieve in group interventions than in individual interventions, it may be made easier if we were to begin matching treatments to patient or pain characteristics. This would reduce the variability within each group and enable the interventions to be as idiosyncratic to each patient as a group intervention will allow. This is a difficult issue, and for each argument in support of this course of action there is another against that is equally valid (see Turk and Okifuji, 2002; Eccleston et al., 2003; Turk, 2005 for an introduction). However, it may be appropriate for the neuropathic pain population. If pain management programs specific to neuropathic pain are developed, it is highly likely that many similarities will exist between these and established cognitive behavioral pain management programs. However, even the addition of one or two elements that target the specific needs of this population, having a slightly different emphasis or adapting only one element of current interventions may improve (1) how people with neuropathic pain perceive and engage with this intervention and (2) the efficacy of this intervention for this population. 58.9. Conclusion The issues discussed in this chapter are summarized in Table 58.1. Although sparse, the evidence suggests that neuropathic pain can result in substantial reductions in patients’ health-related quality of life. In addition, co-morbid and associated problems may contribute to increased impairment and distress and exacerbate the adversity of the pain experience. Currently, if people with neuropathic pain enter a pain management program, they receive an intervention alongside people with nociceptive pain that is validated and researched on nociceptive pain. It appears to have been assumed that the impact of neuropathic pain does not differ significantly from nociceptive pain, and that the intervention will fit with their needs and the patient will make gains. However, these cognitive behavioral interventions, which focus on beliefs, appraisals, acceptance, physical reactivation and activity-pacing are still not evidence-based in the case of neuropathic pain. Given the available data and literature, we do not yet have a full understanding of the psychological and physical impact of neuropathic pain, which we need if we are to develop models for neuropathic pain that both clinicians and patients can use. It is necessary to develop models of change for neuropathic pain and specify which components of established cognitive behavioral interventions for chronic pain are effective in neuropathic pain. Cognitive behavioral methods that differ from those used in nociceptive pain need to be

COGNITIVE BEHAVIORAL APPROACHES AND NEUROPATHIC PAIN Table 58.1 Chapter summary ●

The incidence of neuropathic pain is believed to be increasing.



Current pharmacotherapy is unable to provide satisfactory relief in a high proportion of people with neuropathic pain.



There is some evidence that neuropathic pain has a detrimental impact on people’s quality of life, mood and distress.



Given the above, cognitive behavioral interventions may be beneficial in helping people to reduce the impact of neuropathic pain on their lives.



The majority of the research that has led to the development and evaluation of cognitive behavioral interventions for chronic pain has involved populations with nociceptive pain, as opposed to neuropathic pain. There is a very small evidence base for cognitive behavioral interventions for neuropathic pain.



Although many similarities exist between nociceptive and neuropathic pain, differences also exist. These differences may result in different experiences in terms of the impact of neuropathic pain, the needs of this population and the interventions they require when compared with nociceptive pain.



These areas require further research to enable cognitive behavioral interventions to be developed for people with neuropathic pain.

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