CHAPTER ONE
An exploration of acceptance and commitment therapy for chronic pain in multiple sclerosis*
Oliver J. Tooze, Anke Karl, Leon Dysch, and David McLaughlin
Introduction
This chapter begins by looking at the impact of pain in multiple sclerosis (MS), current treatment options, and areas of need that are not fully addressed. The insufficiency of current medical approaches to managing pain in MS is discussed and the need for treatments that target the psychological consequences of MS is introduced in this context. The potential for therapies that target cognitive and behavioural responses to symptoms is raised and a novel psychological approach to treating chronic pain is explored. Specifically, the targeting of psychological flexibility and acceptance within the acceptance and commitment therapy (ACT) approach. ACT aims to improve peopleâs ability to live with treatment resistant symptoms rather than focusing on symptom reduction and as such, has the potential for treatment benefits in multiple domains. The ACT approach is briefly outlined and discussed in terms of its usefulness beyond pain management for people with MS (pwMS). As there is limited evidence about the use of ACT specifically with chronic pain in MS, studies using convergent approaches with a variety of chronic and progressive conditions are reviewed including correlational studies of proposed treatment processes and outcome studies of clinical interventions. An illustration of aspects of treatment using ACT is provided in the form of a vignette. This chapter acknowledges the lack of high quality evidence specifically supporting the use of ACT for chronic pain in MS at present and draws on wider literature on ACT processes and treatment outcomes with other patient groups to build a theoretical argument for further research in this area.
Search methods for the identification of studies
A search was conducted across three databases: PsycINFO, Web of Knowledge, and PubMed using the terms âmultiple sclerosisâ, âpainâ, âacceptanceâ, âacceptance and commitment therapyâ, and âmindfulnessâ. Reference lists from key papers were also examined to identify further sources. Articles were reviewed by title and abstract for potential relevance. Key author searches and citation searches for key papers were also completed.
Background
MS is a progressive neurological condition affecting around 110 people per 100,000 population in England and Wales (Richards et al., 2002). It is the most common disease of the central nervous system affecting young adults (Multiple Sclerosis Trust, 2008) and is associated with significant psychosocial impairment (Foley & Brandes, 2009). MS tends to affect young adults during their working lives (Sadovnik et al., 1992) meaning the costs resulting from MS related disability to the individual and society are considerable (Whetten-Goldstein, et al., 1998).
Nearly all MS patients experience sensory alterations including pain, numbness, and tingling at some point in their illness (Miller, 2001). Prevalence estimates for chronic pain range from 48% to 65% (Khan & Pallant, 2007; Moulin et al., 1988; OâConnor et al., 2008). For those with MS, pain has been demonstrated to have a detrimental impact on quality of life (Hawthorne et al., 1999), health related quality of life (Forbes et al., 2006), psychological well-being and independent living (Hawthorne et al., 1999) as well as being associated with poorer mental health (Stewart & Ware, 1992). Medication is frequently used for the treatment of pain in MS (Heckman-Stone & Stone, 2001), however, there is still no satisfactory medical approach to managing pain in MS (Rossi et al., 2009) and currently no robust support for the efficacy of any one approach (OâConnor et al., 2008). There are also perceived barriers to accessing pain treatment including lack of accessible pain or MS specialists, side effects of medication, fear of taking medication/dependence, lack of finances, and the belief that nothing works for pain (Khan & Pallant, 2007). Treatment for pain has also been found to account for nearly 30% of the total use of medications for the management of all MS related symptoms (Solaro & Uccelli, 2011). There are many different types of pain associated with MS, as well as a range of other potential impairments such as fatigue, spasticity, balance problems, and visual disturbances. There are also differences in MS type, most commonly including phases of exacerbation and remission. These factors, along with the unpredictable and progressive nature of the disease, present challenges for those living with the condition, and to the development of effective treatments.
Currently available treatments do not offer full symptom relief and do not address the significant psychosocial component of this condition. While further research into symptom reduction is critical, there is also a pressing need to investigate how best to support people living with this condition within the current limited treatment environment.
The evidence for cognitive behavioural approaches to managing the psychological consequences of MS is promising. Cognitive and behavioural responses to symptoms have been related to health related functional impairment and have been found to be more closely related to distress than illness severity (Dennison et al., 2009). Importantly, these responses are potentially modifiable. The available evidence suggests that cognitive behavioural therapy (CBT) is effective in the treatment of depression with this group of people and in helping people adjust to the condition. The Cochrane review (Thomas et al., 2006) called for further pragmatic research to establish whether CBT is effective for chronic pain with this group of people as well as consideration of the active processes.
ACT builds upon cognitive-behavioural principles and has demonstrated potential as a method of enabling people to live well with chronic pain. Data from chronic pain treatment programmes using ACT suggest that improved outcomes may not be dependent on changes in pain symptoms (McCracken & Gutierrez-Martinez, 2011; McCrackenet al., 2005; Wicksell et al., 2010) but are associated with changes in acceptance and psychological flexibilityâthe processes targeted by this approach. If this is the case then there are grounds to believe that such approaches would be useful for those with MS, and potentially of greater benefit than approaches focused on pain control or reduction such as traditional CBT.
ACT and its mechanisms of change
ACT is one of the third generation behavioural therapies, differentiated from traditional behaviour therapy and cognitive-behavioural therapy by a greater focus on the context and functions of psychological phenomena over their content or form (Hayes, 2004). Interventions described as âcontextual CBTâ follow the same approach (McCracken et al., 2007). ACT does not aim to change the frequency or nature of any thoughts or feelings, as it is the response to thoughts and feelings that is seen as most important rather than how negative they are. One area where ACT differs most clearly from traditional CBT in this respect would be in that it does not use cognitive restructuring/disputation as a therapeutic technique. The emphasis in therapy is instead on changing how individuals respond to any given experience.
Therapeutic change in ACT is hypothesised to work to increase âpsychological flexibilityââthe ability to contact the present moment fully and without unnecessary attempts to control it, and at the same time to change or persist in behaviour in order to serve valued ends (Hayes et al., 2006). Key processes addressed with the aim of increasing psychological flexibility include experiential avoidanceâthe attempt to escape or avoid unwanted internal experiences (e.g., thought/worry) and cognitive fusionâthe tendency for individuals to view thoughts as a true or accurate representation of reality (Hayes, 2004). These processes are not in themselves harmful, but become the focus of intervention if they are identified as getting in the way of living in a way the individual values. The term âacceptanceâ in this model is another aspect of psychological flexibility and is used to refer to the alternative to avoidance. It is the active taking in of what is afforded by the history and current context of the person. A related process that is distinguishable within the model is mindfulness, through which individuals attempt to increase awareness of psychological experiences in a way that is present focused, non-struggling, and non-evaluative (Vowles et al., 2009). Other key elements of the model include a focus on the clientâs values, or what is most important to them in terms of how they would choose to live their life, and committed actionâthe building of broad and flexible patterns of behaviour that work in service of these values. Although symptom reduction may occur, the aim is to explore and if necessary change how the person relates to their symptoms (e.g., thoughts and feelings associated with chronic pain).
A recent analysis of the empirical evidence concerning ACT found coherent support for the model, evidence for its efficacy across a broad range of psychological problems, and also concluded that the research suggests that it is working through its hypothesised process of change, that is, increasing psychological flexibility (Ruiz, 2010). This finding is supported by considerable research using the Acceptance and Action Questionnaire (AAQ) (Hayes et al., 2004). The AAQ was designed as a general measure of the ACT processes hypothesised to contribute to psychological flexibility and is probably the most frequently used measure in ACT process research. A meta analysis of thirty-two studies investigating the relationship between the AAQ and various quality of life outcomes found that on average psychological flexibility was correlated 0.42 with a diverse range of outcomes from job performance and satisfaction, mental health, and impact of pain on functioning. Versions of the AAQ in different contexts have found higher levels of psychological flexibility consistently associated with better quality of life and outcomes (Hayes et al., 2006).
Acceptance and psychological flexibility in MS and chronic pain
In a review of the empirical literature, Mohr and Cox (2001) outlined how behavioural/problem-focused coping strategies that attempt to alleviate problems that cannot be resolved may lead to frustration. The authors argue that, while the evidence to substantiate this is limited, this is a frequent occurrence in MS.
Cognitions are influential in adjustment, however, problematic cognitions in MS may be realistic and not amenable to challenges (Dennison et al., 2009). For example, thoughts about symptoms worsening or becoming less independent may not necessarily be âdistortedâ. Because of this, it may not be appropriate to target the content of cognitions as in traditional cognitive therapy.
Symptom reduction in MS is not always possible and commonly pain cannot be entirely eliminated or avoided. Treatment may mean a trade-off between pain and a loss of function (i.e., too much pain medication may minimise the pain but lead to increased fatigue, weakness, impact on cognition). While pain control is useful where possible (and can lead to improvements in functioning), attempts to fully control, reduce, or eliminate pain (and related thoughts/emotions) may be unsuccessful in MS and continued attempts may be counterproductive. In such circumstances, acceptance (or âwillingnessâ to experience psychological phenomena; the opposite of experiential avoidance) rather than control strategies may be more beneficial (Thompson & McCracken, 2011).
In the wider pain research literature evidence has been found for psychological flexibility as a mediator in improving functioning (Wicksell et al., 2010), and for experiential avoidance as a mediator between coping and psychopathology (Costa & Pinto-Gouvenia, 2011). In juvenile arthritis an investigation of the independent roles of pain intensity, psychological inflexibility, and acceptance of pain in predicting functional disability, anxiety, quality of life, and health related quality of life, greater psychological inflexibility has been found to uniquely predict higher anxiety, lower quality of life, and lower health related quality of life (Feinstein et al., 2011). Increases in acceptance of pain were found to be uniquely related to increase in quality of life. A correlational study also found that those chronic pain patients who demonstrated greater acceptance as measured with the Chronic Pain Acceptance Questionnaire (CPAQ) were the patients who used less health care resources and were the least distressed and disabled by their pain (McCracken et al., 2004).
While the theoretical argument for the potential benefits of treatments that target acceptance and psychological flexibility in chronic pain and MS is strong, more research is needed that looks specifically at the effects of targeting these psychological processes with this patient group.
Evidence for use of ACT with chronic pain
The literature specifically addressing ACT for chronic pain in MS remains limited and so it is useful to explore evidence arising from the use of ACT for pain in other chronic conditions. The American Psychological Association has recently acknowledged that the research support for the use of ACT with chronic pain is now âstrongâ, and unlike other supported approaches, this is across âchronic and persistent pain in generalâ and not specific to a given pain syndrome (American Psychological Association, Division 12, 2011). Looking at individual studies, ACT has been demonstrated to be effective in reducing the impact of chronic pain on functioning in three large open trials in a specialist pain clinic setting (McCracken et al., 2005; McCracken et al., 2007; Vowles & McCracken, 2008). The first study used a contextual CBT three week interdisciplinary group treatment programme with 171 patients (Vowles & McCracken, 2008). Reliable change analysis suggested that three quarters of those treated demonstrated reliable improvement in depression, pain related anxiety, or overall disability at three month follow up, with the majority of these demonstrating reliable improvement in more than one domain. Changes in outcomes were related to changes of the hypothesised process measure: acceptance as measured by the CPAQ (McCracken et al., 2004) and values based action, as measured with the Chronic Pain Values Inventory (CPVI) (McCracken & Yang, 2006). There was no randomisation to a control condition, however, moderate to large improvements were seen at post treatment and follow up despite the long-standing, complex nature of participantsâ conditions. A follow up study found that significant improvements were still present at three years following treatment completion with 64.8% showing reliable improvements in at least one key domain. Improvements in acceptance and values based action were also found to be associated with improvements in emotional and physical functioning (Vowles et al., 2011).
The second study used a contextual approach with 108 patients with complex chronic pain (McCracken et al., 2005). Comparison of within subjects measures of pain and functioning showed no significant changes during variable lengths of pre-treatment phase. Improved pain and functioning was, however, seen during the treatment phase and largely maintained at three month follow up. Effect sizes were large, with reductions in analgesic use and general practitioner (GP) visits also seen at follow up. Significant improvement in hypothesised process measures on the CPAQ were also seen during, but not before, the intervention. Changes in process measures also correlated highly with functional changes while changes in pain, although present, were comparatively small. This suggests that improvements were not solely due to a reduction in pain.
The third study employed a contextual approach with fifty-three highly disabled patients with chronic pain (McCracken et al., 2007). A clinical comparison group consisted of 234 adult patients with chronic pain, but without the level of disability, also completing a three week pain management programme. Statistically significant and clinically meaningful change was demonstrated for the highly disabled group including improvements in pain-related distress, physical and psychosocial disability, depression, pain related anxiety, daily rest due to pain, and acceptance of pain. Effect sizes were similar in magnitude to the clinical comparison group.
It should be noted that these three studies were all produced by the same team using a very intensive form of treatment delivery, typically six hours per day, five days per week, for three to four weeks. The psychological therapy is incorporated into an interdisciplinary approach including physiotherapists, occupational therapists, nurses, physicians, and clinical psychologists and the generalisability of these results to patients with MS seeking services in the community cannot be assumed.
There is however evidence from other sources to support the possibility of using less intensive ACT interventions outside a specialist setting. For example, a randomi...