sugar coating

How does chronic pain management work? A hypothesis to ponder


There have been increasing calls for clinicians and researchers to move away from using grouped results from randomised controlled studies because these fail to distinguish between those people who do really well and those who do not. Eminent researchers like Amanda Williams, Chris Eccleston and Steven Morley have said it’s time to move away from “black box” RCTs in chronic pain, and begin to use more sophisticated methodologies to examine not only outcomes but processes during therapy (Williams, Eccleston & Morley, 2012).  While early studies comparing CBT-approaches to chronic pain vs waiting list controls demonstrated moderate to large effects, over time the results have shown smaller effects as these approaches are compared with other active treatments.

The magic ingredients in an effective CBT-approach to self managing chronic pain are not all that clear. There are some people suggesting that it’s all about providing good neurophysiology information about pain mechanisms to people with chronic pain (Moseley, Nicholas & Hodges, 2004; Louw, Diener, Butler & Puentedura, 2013) and this does seem to be part of the picture – but is it enough? Education doesn’t have the greatest of effects on behaviour in any other area of health (think of diets, smoking, exercise, immunisation), and while there’s no doubt we need to reduce the threat value of pain by helping people understand the old message “hurt does not equal harm” (a message I know has been around since the early days of Fordyce and Sternbach), this doesn’t always produce results.

There are other people who argue that it’s all about exercise and that exercise is not only good for people with chronic pain, but also as a “preventative” for those with acute pain who are at risk of develop chronic pain (for example in early whiplash) but this has recently been challenged by the findings from PROMISE, a study by Michaleff, Maher, Lin, Rebbeck, Jull, Latimer et al, (2014).  Nevertheless, exercise does seem to be a common ingredient in most self management programmes.

Pacing, as I indicated a couple of posts ago, has been included in many pain management programmes, but has not been examined in-depth – and even defining pacing has been pretty difficult.

Similarly for most of the approaches included in chronic pain self management: lots of “logical” reasons to include components, but when we take a closer look at them, there’s either very little information on the coping strategy itself, or the effect sizes are equivocal.

Nevertheless, for people with chronic pain who haven’t responded to any other form of treatment, these programmes are a life-line. Remember, that for many people it has taken 4 years to get referred to a pain management programme, and the chances of finding good medication options (or interventional procedures) that abolish pain are pretty slim.

“ Of all treatment modalities reviewed, the best evidence for pain reduction averages roughly 30% in about half of treated patients … do not always occur with concurrent improvement in function … These results suggest that none of the most commonly prescribed treatment regimens are, by themselves, sufficient to eliminate pain & to have a major effect on physical & emotional function in most patients with chronic pain.”Turk DC, Wilson HD, Cahana A: “Treatment of Chronic Non-Cancer Pain”, The Lancet 2011; 377: 2226–35 (25.6.11)

So, we have programmes that are offered to people who have reached the end of their treatment line, but we don’t really know much about what works and for whom. Yet there is an effect on people, small though it may be, and there’s some evidence that people who do what the programmes suggest do better than those who don’t (Nicholas, Asghari, Corbett, Smeets, Wood, Overton et al, 2012).

Two things occur to me:

  1. We need to use more sophisticated ways to study process and subgroup analysis of people in chronic pain self management programmes. I think this might include using single subject experimental design. This design was used in some of the early work by Vlaeyen and colleagues looking at response to graded exposure for pain-related fear and avoidance (Vlaeyen, de Jong, Geilen, Heuts and van Breukelen, (2001), and Asenlof, Denison & Lindberg (2005). It allows clinicians and patients to really monitor the effect of various parts of treatment, and can be a very sophisticated way for “real life” clinical work to be evaluated.  Another option is the kind of analysis conducted by Burns, Nielson, Jensen, Heapy et al (2014) where subgroups were evaluated over the course of a pain management programme to identify the programme elements that might be most effective. Their findings suggest that there are two mechanisms: one directly relevant to the components of the programme such as relaxation or exercise, and another that they call “general mechanisms”. It’s this latter one that interests me.
  2. The way in which a programme might work may not be associated with the components. Like Burns and colleagues, I’ve thought that perhaps there is something within group process, or therapeutic process that is the “active ingredient” for change. Let me quickly unpack this.

Some people do quickly adopt what a programme suggests is useful – or at least they complete recording sheets to suggest they have. Others might still use the strategies, but perhaps in a different way from that originally intended (think of pacing as a good example: lots of patients I’ve seen who have been through a chronic pain management programme think that it’s all about “stopping before your pain gets out of control”, and rather than maintaining a consistent level of activity over time, their function gradually reduces as they do less and less. Their interpretation of pacing is that it’s about using your pain as a guide.

And still others pick and choose elements of what is covered in a programme – and use the strategies flexibly within the context of their daily lives. So on one day they may boom and bust, while on other days they chunk their activities into smaller bits. One day they’ll arrange their environment to suit them, another day they’ll ask other people to give them a hand. Their coping skill use depends on their goals and priorities at the time.

What DOES change is their self efficacy or belief that they CAN do what’s important in their lives – by hook or by crook. And even more importantly, they have something to DO that’s important to them. Maybe something that hasn’t been studied in sufficient detail is what a person wants to be able to do, what’s their motivation, what are their valued occupations? That’s a hypothesis about therapeutic change I think we need to ponder.

 

Asenlof, P., Denison, E., & Lindberg, P. (2005 ). Individually tailored treatment targeting motor behavior, cognition, and disability: 2 experimental single-case studies of patients with recurrent and persistent musculoskeletal pain in primary health care. Physical Therapy, 85(10), 1061-1077.

Burns, J., Nielson, W., Jensen, M., Heapy, A., Czlapinski, R., & Kerns, R. (2014). Does Change Occur for the Reasons We Think It Does? A Test of Specific Therapeutic Operations During Cognitive-Behavioral Treatment of Chronic Pain The Clinical Journal of Pain DOI: 10.1097/ajp.0000000000000141

Louw, Adriaan, Diener, Ina, Butler, David S, & Puentedura, Emilio J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy theory and practice, 29(3), 175-194.

Moseley, G., Nicholas, Michael K., & Hodges, Paul W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. The Clinical Journal of Pain, 20(5), 324-330. doi: http://dx.doi.org/10.1097/00002508-200409000-00007

Michaleff, Zoe A., Maher, Chris G., Lin, Chung-Wei Christine, Rebbeck, Trudy, Jull, Gwendolen, Latimer, Jane, . . . Sterling, Michele. (2014). Comprehensive physiotherapy exercise programme or advice for chronic whiplash (PROMISE): a pragmatic randomised controlled trial. The Lancet, 384(9938), 133-141.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104.

Vlaeyen, J. W., de Jong, J., Geilen, M., Heuts, P. H., & van Breukelen, G. (2001). Graded exposure in vivo in the treatment of pain-related fear: a replicated single-case experimental design in four patients with chronic low back pain. Behaviour Research & Therapy., 39(2), 151-166.

Williams, Amanda C. de C., Eccleston, Christopher, & Morley, Stephen. (2012). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, (11). http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007407.pub3/abstract doi:10.1002/14651858.CD007407.pub3

Tauhou "New arrival"

Pain management and the political


There are only a few more weeks before a general election in New Zealand. This means the usual rounds of promises, muck-racking, hoardings and defaced hoardings. As I browse the research into chronic pain, and bemoan the lack of attention to the SOCIAL of the biopsychosocial model, I find myself looking at factors that almost entirely depend on a political solution. Let me explain.

Social. What is meant to fit into this part of Engel’s model? Drawing from one of his earlier works, Engel stated in his Cartwright Lecture at Columbia University College of Physicians and Surgeons (1977), that

“Health restored is not the former state of health but represents a different intersystemic harmony than existed before the illness, with characteristics based on all the system changes incurred during the illness. By virtue of the illness not only is the individual changed as a person, but so too may be changed others in relationship to him, in the family as well as the community…”

I interpret this segments of Engel’s work, and in particular the diagram he included in the published version of this speech, as a clear indication that while a biomedical model looks at the levels from quarks to systems, a biopsychosocial systems approach looks beyond this and into the person right up to society and nation.

biopsychosocialAnd this is where it gets political. While individuals reappraise their self worth, learn new skills, develop new living patterns (well within the contributions of most allied health including occupational therapists), Governments and economic policy have a direct influence on what occurs in the interaction between what the individual does and the effect on the family, community, culture and subculture (however you define this), and ultimately society-nation.

Here’s some recent research illustrating how these factors interact.

When a person develops chronic pain, clinicians are likely to ask “How did it begin? What happened?” The person will probably talk about an event in the last few months or years that may have triggered the most relevant experience of pain. What clinicians may not think to ask about, and the person with pain may not even consider, is what happened in early life.

Goosby (2013) looked at socioeconomic disadvantage and maternal depression in individuals during their teenaged years, and found that the probability of chronic pain increases in magnitude over life in those adults who had parents with less education, and in those who had mothers who were depressed. She points out that mothers who live in low-income households (e.g. single mothers on a benefit?) are “especially vulnerable to psychological distress and disorders such as depression” (p. 77). She calls this “intergenerational transmission”, and goes on to describe “risk amplification” that occurs for children with low socioeconomic status who continue to experience deprivation as they become adults, while those who are not disadvantaged continue to maintain their health and wellbeing at least in part because of economic stability.

She continues by describing that childhood disadvantage increases the risk of depression and pain in adulthood and that adult socioeconomic status is a key factor through which adult health and wellbeing emerge. Interestingly, she found that adult depression is influenced by fewer factors than adult chronic pain – in fact, she found that all indicators of childhood socioeconomic status had significant interactions with the RR of adult chronic pain relative to no conditions, and particularly for those who had mothers who were depressed.

A similar finding was made by Lacey, Belcher, & Croft (2013) in a study looking at life-course socioeconomic position influencing chronic pain in older adults.

It doesn’t take a rocket scientist to see that this is political. In a climate where single parents (most often women) are told they are “welfare dependent”, receive a tiny sum of money or are asked to return to work when the child is 5 years old, often to work that is poorly paid (because more senior and well-paid positions rarely allow workers time to attend to children’s needs, mind you neither are poorly paid jobs), life is stressful and anyone vulnerable to depression and/or chronic pain is at high risk.

A sense of injustice can exist where individuals feel that circumstances are not fair, and that they are the victims of an injustice. In New Zealand there is a mitigating factor in that all accidental injuries are covered by the state-owned and tax-payer funded Accident Compensation Corporation. BUT, and this is a big one, there are incentives for those case managers to encourage and support people to return to work, while those who are injured while not working may receive far fewer entitlements and will not receive rehabilitation to return to work. This shouldn’t matter because access to rehabilitation is available to all – but in practice, does it?

McParland & Eccleston (2013) found that a sense of injustice can affect emotions, cognitions and behaviours. A particular point they raise is that when there is inequality between two people in a relationship, ie where one has money but the other does not (one is working, while the other is unwell with chronic pain) there may be adverse responses between the individuals. In New Zealand, if one person in a longterm relationship becomes unwell, while the other person is employed there is very little if any financial support for the couple. If the earner is only receiving a minimum wage, this presents a huge obstacle even to attending treatment.

My final review today (and believe me, there are SO many more than I’ve touched on!) comes from Antao, Shaw, Ollson, Reen and colleagues (2013).  They looked at intermittent work incapacity and how this influenced the way we can support people to sustainably remain working despite having times where their chronic pain interferes with this ability.  They draw on Bronfenbrenners Ecological Systems Theory which views child development within a context of social and interpersonal environments. Antao and colleagues used the environmental framework to analyse the workplace: .Micro level issues are defined as issues within the individual and personal realm and include factors such as cognitive deficits. Meso level issues are related to the workplace, such as workplace policies and accommodations. Finally,macro level issues are related to socio-cultural or political issues, such as benefits and insurances. (p. 13).

What these researchers found was there is considerable literature discussing micro-level support for people with pain. These are things like the individual learning about his or her condition, maintaining physical fitness, working on routines that can maintain or support work. Education, for example, focused on giving individuals information about worker’s rights, how to maintain quality of life through coping changes.

Meso-level strategies were rather more scarce in the literature, but they were present – things like educating employers and supervisors, modifying tasks or workstations, ensuring people are aware of the benefits of working on the individual and so on. I guess some of these fit into the “ergonomics” category.

Macro-level strategies were even less often presented, but included using flexible work practices (shifts, glide time, sharing tasks), providing timely financial support during times when an individual is unable to work, anti-discrimination laws and similar.

Meso- and Macro-level strategies are about social change and political will.

Where does this leave me?

When I consider the influence socioeconomic deprivation has on people, right from childhood through to the flow-on effects in adults, I worry about the effects of policy on people in New Zealand. There is an increasing disparity between those earning above $100,000 per annum, and those on the minimum wages of $14.50 or so. Worse for those on a benefit who are also labelled “benefit dependent”.

I’m worried that very often there is an outcry if a policy is introduced to support the situation of workers – employers complain that this is unsustainable, that they won’t remain in business and there will be economic fall-out because of this. I’m concerned at labelling that occurs if a person is on a benefit. Being on a benefit is not a life of luxury, yet benefit fraud is pursued more vigorously than so-called “white collar” crime, and in research conducted by Victoria University in 2011 “22 per cent of tax offenders received a custodial sentence” while “approximately 60 per cent of welfare fraud offenders received a custodial sentence.” Sophie Rule, Report Writer, Youth Parliament 2013, Ministry of Youth Development.

I am unhappy that the “trickle down” of economic growth hasn’t trickled, and that people who have few resources in so many ways are in a very real situation of social injustice. It’s a brave person who challenges an employer who decides to fire a worker who, having been in the same job for 20 years, has a heart attack and needs three months time off work. True story. Or a woman who, since the business she works for has moved from town to Rolleston, now has to travel by bus for an hour, then cycle for another 30 minutes to work in a job that pays minimum wage. And do the same again in the evening, despite her chronic obstructive pulmonary disease. In Christchurch. In winter. Oh and she lives with the man who had the heart attack. She doesn’t get paid when she needs a week or two off work because of her COPD as happened recently.

The social is largely, I think, a political matter. And chronic pain affects one in six New Zealanders. And they all vote.

 

Antao, Lilian, Shaw, Lynn, Ollson, Kaitlyn, Reen, Kavleen, To, Flora, Bossers, Ann, & Cooper, Lynn. (2013). Chronic pain in episodic illness and its influence on work occupations: A scoping review. Work: Journal of Prevention, Assessment & Rehabilitation, 44(1), 11-36.

Goosby, Bridget J. (2013). Early life course pathways of adult depression and chronic pain. Journal of Health and Social Behavior, 54(1), 75-91. Goosby, Bridget J. (2013). Early life course pathways of adult depression and chronic pain. Journal of Health and Social Behavior, 54(1), 75-91.

Lacey, Rosie J., Belcher, John, & Croft, Peter R. (2013). Does life course socio-economic position influence chronic disabling pain in older adults? A general population study. European Journal of Public Health, 23(4), 534-540.

McParland, Joanna L., & Eccleston, Christopher. (2013). “It’s not fair”: Social justice appraisals in the context of chronic pain. Current Directions in Psychological Science, 22(6), 484-489.

old man willow

Should we take their word for it? Patient-reported vs observed functional outcomes


Pain is a subjective experience. There’s no direct means to measure what it is like to be in pain. Disability, or the impact of pain on what we do in daily life is, on the other hand, able to be observed as well as reported on by people with pain. A question that has always fascinated me is the relationship between what an individual says they can or can’t do, versus what they can be observed to do.

One of the more common ways to determine disability by observation is the “functional capacity evaluation” – and readers of my blog will know that I’m not especially fond of them when they’re used to determine “work fitness”. There are instances though, where they make sense – particularly if the individual with pain is able to gain confidence about what he or she can do. Just don’t use them to predict whether a person can carry out a full working week.

Alternatively, and for reasons of convenience and cost, self-report measures of disability are often used. These are thing like the Oswestry Disability Index (Fairbank & Pynsent, 2000), or the Oxford Scale for hip and knee function (Dawson, Fitzpatrick, Carr & Murray, 1996).  These pen and paper assessments are completed by patients, have excellent psychometric properties, and are often used for both assessment and outcome measurement.

The question is: do they represent the real world experience of the person with pain? How accurate are they, really?

In the Orthopaedic Surgery Department where I work, physiotherapists conduct a functional assessment of all people who have been referred for hip and knee joint replacement. The activities used are aligned with the Oxford hip and knee questionnaires. What’s interesting is how poorly the two are correlated. Physiotherapists recognise that many people report difficulty performing things like going up steps, kneeling and so on, but when they are asked to do those same movements in the clinic, they have excellent motor function and manage them well. Why? and which version of the “truth” do we use?

I don’t have the answer, because physical performance and self-reported disability are influenced by many different factors, but I am interested that in a recent study conducted by the IMPROvE Study Group in Denmark, researchers found that using AMPS (Assessment of Motor and Process Skills – an assessment approach developed and used by occupational therapists) and the SF-36 Mental Composite Score showed distinct differences in outcomes six months after a two-week interdisciplinary pain management programme for people who met the 1990 American College of Rheumatology classification for fibromyalgia.

What does this mean?

The first point is that the programme these people attended demonstrated good outcomes in the things that matter most: daily activities, self care and motor performance. Participants became more able to do the important occupations that you and I need to do each day.  Group content doesn’t look any different from the pain management programmes I’ve seen around the world. Lots of information, sharing experiences with one another, exercise including how to increase daily exercise, developing ways to return to usual activities of daily living, and some psychology sessions as well as an opportunity to meet with the rheumatologist. Interestingly, two weeks is not enough time to develop changes in muscle strength – yet function and activity levels increased. It’s not a “training” effect, at least not physical training. Two weeks, 35 hours a week, is not an enormous amount of time in which to deliver a programme of this type – but it’s clear it can and does make a difference for people who had fibromyalgia diagnosed roughly 1 – 3 years ago.

The second is that the two outcome measures are not measuring the same thing.  Using the SF-36, change was minimal, and not clinically significant, neither were changes at six months statistically significant. Using AMPS, however, individuals demonstrated a clinically relevant improvement in performance in both motor ability and process ability (ADL). Interestingly, the researchers report that there were large interindividual differences – something that grouped data cannot show.  Self-report measures show what the person believes he or she can do.  AMPS provides external validation of performance, or what the person will do, or does do when observed. And from this study, it looks like AMPS is more sensitive to change, and to individual differences, than the well-known SF-36. AMPS also provides information on the quality of performance, something that is missing from the SF-36.

In terms of the research design, the assessors, all occupational therapists trained in AMPS and who had just recently been recalibrated (checking to see how consistent and how closely they remain true to the original training) did not know which of the two groups individuals had come from (control or programme).

From this study, I draw a couple of conclusions:

  1. Using both observed performance and self-report gives a broader picture of the impact of pain on daily life. That the two measures don’t correlate well is fine – they’re measuring different things. It’s good to be reminded that what a person says they have trouble with doesn’t necessarily reflect what they can do in usual setting, nor the quality of the performance. Both measures are useful, and it might be worthwhile using both. An unanswered question, of course, is what the participants thought. How did they view their performance? It would have been nice to see something like the Canadian Occupational Performance Measure included in the outcome measures.
  2. While group analyses may not show much difference, within the group, some individuals responded very well. It’s worthwhile considering some different analyses that can show the variation within a group – and then start the search to find out the characteristics of those people who responded well, and this is another reason I like the single subject experimental design approach to clinical outcome measurement.
  3. Occupational therapists, trained to understand occupation made a significant and unique contribution to this study. Many disciplines fail to recognise the specialist expertise of occupational therapy: this study shows that by assessing and focusing on activities that matter to individuals, and directly measuring the impact of interventions on occupation, a more detailed analysis of progress is achieved. Time to wave the occupational therapy flag I feel!

In answer to my question, should we take their word for it? I think the answer is – not exactly. We need to spend time understanding the differences between self-report and observed performance, not as a way to ‘catch a person out’, but as a way to more adequately assess what matters to people who experience chronic pain.

Amris, Kirstine, Wæhrens, Eva E., Christensen, Robin, Bliddal, Henning, & Danneskiold-Samsøe, Bente. (2014). Interdisciplinary rehabilitation of patients with chronic widespread pain: Primary endpoint of the randomized, nonblinded, parallel-group IMPROvE trial. PAIN®, 155(7), 1356-1364. doi: http://dx.doi.org/10.1016/j.pain.2014.04.012

 

Dawson J., Fitzpatrick R., Carr A., Murray D. (1996). Questionnaire on the perceptions of patients about total hip replacement surgery. Journal of Bone and Joint Surgery, 78:185-90

Fairbank JCT & Pynsent, PB (2000) The Oswestry Disability Index. Spine, 25(22):2940-2953

crossing paths

Pacing – Activity management concepts (a longer than usual post)


In the literature recently there’s been a flurry of activity around pacing as a concept. When I first wrote about pacing I couldn’t find very much that had been published, and I ended up writing something that made sense to me at the time. Today I hope to add to that by summarising a few of these recent papers, and discussing some findings from my PhD research.

Firstly, what is pacing?

Pacing isn’t well-defined. In one of a few recent papers on pacing, Nielson, Jensen, Karsdorp, & Vlaeyen (2013) suggest that pacing should be defined as “…the regulation of activity level and/or rate in the service of an adaptive goal or goals” (p. 465).  Gill & Brown (2009) point out that because pacing is poorly defined, and despite the term being used widely and most especially in the mid 20th century (and related to the “3 P’s” of planning, positioning and pacing used for rheumatoid arthritis), there are a diverse range of articles mentioning pacing, but no consensus as to what it might include.

Jamieson-Lega, Berry and Brown (2013) scanned the literature and sought feedback from stakeholders from a range of disciplines, and developed a concept map for the term. Concept mapping involves identifying the use of the concept in the literature, defining the attributes of the concept and developing a model case (a “pure” example), and both borderline and contrary cases (incorporating none or only some of the concepts). Antecedent and consequent outcomes associated with the concept of pacing were also defined, and empirical referents, or phenomena that show how the concept has occurred.

Key criteria for pacing, drawn from the literature by Jamieson-Lega, Berry & Brown (2013) show that pacing has five consistent attributes:

  1. Action – pacing involves intentional behaviour
  2. Time – pacing occurs over time and involves attending to time
  3. Balance – weighting activity and rest in accordance with intended outcomes
  4. Learning – pacing needs to be learned, it requires an effort
  5. Self-management – the process of using pacing involves independently integrating the practice once the skill has been developed.

The definition proposed by this group is therefore slightly different from Neilson and colleagues:

“Pacing is an active self-management strategy whereby individuals develop self-efficacy through learning to balance time spent on activity and rest for the purpose of achieving increased function” (p. 209).

When would someone need to develop this skill and what might happen if they use it successfully?

Janieson-Lega, Berry and Brown (2013) suggest that there are prerequisites for the need to develop pacing.  These involve activity disruption secondary to pain, imbalance between activity and rest, patient’s lack of pain self-management knowledge and having pain. When an individual successfully uses pacing, the expected outcomes are pain management, self-direction and improved self-efficacy, avoidance of pain exacerbation, balanced activity/rest, increased functional ability, and increased knowledge and skills in activity planning and prioritising (p. 210).

Therefore, if a person with chronic pain isn’t able to engage in what they want to do, finds it difficult to have sufficient rest or activity, lacks self-management knowledge and has pain, they could expect that pacing would enable them to manage their pain more effectively, become self-directed and more confident, minimise flare-ups, have a balance between activity and rest, be able to do more, and know more about what is important and how to achieve what is valued.

What does the literature suggest?

Despite the problems with defining pacing, and consequently having no real measure of pacing, there have been several studies examining the relationship between pacing and other important variables. The first study I saw of pacing was McCracken and Samuel’s 2007 paper looking at the relationship between avoidance, pacing and other activity patterns.  Surprisingly, these authors found that pacing was associated with both activity avoidance and disability. From this study, the authors suggested that avoidance activity may resemble healthy coping (and from this I deduced that pacing is considered “healthy”).

Murphy, Smith & Alexander (2008) conducted a small pilot study of activity pacing in women with lower limb osteoarthritis. This study used actigraphy to monitor movements, and correlated this data with self-reported pain and fatigue. This study found that “high pacers” had more severe, escalating symptoms, and activity pacing was related to lower physical activity. Karsdorp & Vlaeyen (2009) found that activity avoidance but not activity pacing was associated with disability, and challenged the notion that pacing as an intervention is essential in pain management.  van Huet, Innes, & Whiteford (2009) on the other hand, found that “graduates” from a pain  management programme continued to use pacing strategies years after completing a programme, but made no comments as to the effect on outcomes although they did comment that “the application of pacing tended to be individualised, with the use of self-selected time increments and novel strategies providing structure to limit over-activity” (p. 2036).

Andrews, Strong & Meredith (2012) completed a systematic review of activity pacing in relation to avoidance, endurance and functioning.  This study found that pacing was linked to better psychological functioning but more pain and disability, but couldn’t comment on the direction of this relationship.

What about people with chronic pain, what do they think?

People with chronic pain indicate that they use pacing in studies within the qualitative literature. The problem is that these describes rarely include definitions of pacing.  van Huet, Innes and Whiteford’s study from 2009 provides quotes from graduates of pain management programmes who describe pacing as “doing things in bursts of 20 minutes and half an hour, then changing what I’m doing, then go back”; “you don’t have to do the whole lawn at once”.

From my study of people who cope well with pain, participants were selective about their use of pacing. Many of them indicated that pacing was not used when they had an important goal to achieve, while using “chunking” or breaking activities into smaller units was used from time to time – what was interesting is that pain intensity wasn’t used as an indicator for when to stop. Patients I’ve worked with in the past have described using pain intensity or fatigue as the indicator – they always stopped before their pain or fatigue “got out of hand”.

Where does this leave us?

My take in pacing as it currently stands is that there is a great deal of confusion on the matter. My personal opinion, and from both the literature and my own experience with my fibromyalgia, is that pacing can be useful in several ways – but can also be unhelpful.

Here’s how I think it can be useful:

  • When beginning to work towards an increased activity level – by setting a baseline level of activity, then titrating this level up by time or “chunk” increments rather than using pain or fatigue as a guide
  • When individuals are finding it hard to maintain activity levels over a day/week/month, pacing using time or quota as the guide can help extend activity levels over a longer period
  • When people are not sure of their symptoms and find it difficult to know what triggers an exacerbation, usually during the “making sense of pain” phase of adjusting to chronic pain
  • When engaging in routine activities that don’t need to be carried out all at once, such as mowing the lawn, doing the laundry, vacuuming the house. Things that need to be done, but might be carried out over a longer period of time than a single session. I used this approach to write my PhD using Pomodoro Technique.  I also use it when doing housework.

When might it be unhelpful?

  • When individuals continue to use pain as a guide to stopping activity, and “stop before it flares up”
  • When individuals monitor their pain intensity and seek to avoid fluctuations in pain
  • When working to a quota doesn’t help them reach goals and isn’t used to reduce distress, disability and isn’t progressed. A good example of this is the “5 minute break” I saw instituted in a data entry workplace. It was a computerised system that stopped the keyboard for five minutes with no over-ride. The “5 minute break” was obligatory for everyone every 45 minutes, there was no rationale for using it, it interrupted flow, and people HATED it. I’ve seen similar things used when people are returning to work – “work for 15 minutes then stop for 5″, maintained for weeks without being reviewed and without establishing effect.

Next steps?

Having arrived at a reasonable definition, I think it’s time to see how people use pacing in daily life, within the context of the ebb and flow of normal activities. I’d like to see an ecological momentary assessment approach to see what triggers use of pacing, how well do people return to their activities, how long is a break, and whether there is an impact on both disability and distress.

 

Andrews, Nicole E., Strong, Jenny, & Meredith, Pamela J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Gill, Joanna R., & Brown, Cary A. (2009). A structured review of the evidence for pacing as a chronic pain intervention. European Journal of Pain, 13(2), 214-216. doi: 10.1016/j.ejpain.2008.03.011

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18(4), 207-213.

McCracken, Lance, & Samuel, Victoria. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain, 130(1), 119 – 125.

Murphy, S. L., Smith, D. M., & Alexander, N. B. (2008). Measuring activity pacing in women with lower-extremity osteoarthritis: a pilot study. American Journal of Occupational Therapy, 62(3), 329-334.

Nielson, Warren R. PhD, Jensen, Mark P. PhD, Karsdorp, Petra A. PhD, & Vlaeyen, Johannes W. S. PhD. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

van Huet, Helen, Innes, Ev, & Whiteford, Gail. (2009). Living and doing with chronic pain: Narratives of pain program participants. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(24), 2031-2040. doi: 10.3109/09638280902887784

middle earth

Coalface conversations


Knowing about something doesn’t hit the heart or mind nearly as well as doing it. As regular readers of my blog will know, I teach various aspects of pain management to postgraduate health professionals who come from a wide range of disciplines. Hopefully I can guide people towards thinking about the range of factors that can influence what goes on between delivering a treatment and the eventual outcome. It’s difficult, though, because much of what I need to do is based on giving access to information rather than opportunities to practice and then integrate this material.

I thought about this the other day when I met with a new patient. He comes to me with a history of seeing lots of health professionals, and learning lots of skills, but still essentially having the same struggle as he’s had throughout his lifetime. What can I possibly add to his ability to cope when he’s already had such a lot?

One of the conversations I often have with new patients is the relevance of psychosocial factors in their situation. It’s a conversation many health professionals fear – and then avoid. I’ve heard people say that they’re worried that their patient will think they’re saying “it’s all in your head”, or that their problem isn’t taken seriously. That comment is certainly something I’ve heard from patients as well.

So, when I met with this patient I decided to use what he had already learned to find out what he thought was going on, and to help us both discover more about what I could offer. This is essentially Socratic Questioning. Socratic questioning is styled after the teaching approach of Socrates and written about mainly by Plato.  It’s an approach where questions are asked after each answer, and through doing this, people discover the underlying beliefs or “truths” for themselves, rather than being told what to think. It’s a process of discovery – and when I use it with a patient or client, I use it so we can BOTH discover something.

It’s not easy to describe how to use Socratic questioning without coming up with a pat series of responses, but I’ll have a go. In reality, Socratic questioning is a subtle series of responses that can summarise, clarify and then probe behind the superficial to access deeper insights for both parties. If the clinician “knows” what the answers are, and uses this line of questioning to simply show the client something, it can end up being a process to show off how brilliant he or she is, subsequently missing the point of this approach.

Here’s an excerpt (as far as I can remember it):

B:       Tell me what’s been going on since we last caught up.

P:       Well, I’ve had a few flare-ups and I’m struggling a lot with the effort it takes to keep going even on a bad day.

B:       You look defeated when you say that. Do you feel defeated?

P:       Yes. I’m no good. I haven’t got what it takes.

B:      What do you mean “I haven’t got what it takes?”

P:       I haven’t got the strength, or the commitment to keep going. I’m just not good enough.

B:       Has something happened to lead you to this conclusion, or have you felt this way for a long time?

P:        It’s just got clear to me this last week.

B:        So this is a change in your thinking?

P:         Yes. I spent the weekend with my family and saw how happy they all are, and here am I doing nothing and sitting on the sidelines. If my kids were with my brother, they’d be so much better off.

B:        So…because you care about your kids, you decided you’ve let them down, you haven’t got what it takes.

P:        That’s it. If I didn’t have this pain, if I could fight it more, I wouldn’t let them down and they’d be happier.

B:        You said this was a change in your thinking. You’ve had your back pain for quite a while now, and you’ve been around your family lots of times. What did you think about yourself in the past?

P:        I think I was feeling better about myself because at least I was trying and my pain wasn’t in the way as much. Trying hard isn’t enough.

B:        I don’t think I quite follow. Why is trying not enough?

P:       Because no matter how hard I try, I can’t get around my back pain and my kids aren’t getting what they should from me.

B:       Is that what they say to you?

P:       No, but I can see my brother’s kids are so happy.

B:       And you’d like your kids to be happier.

P:       Yes.

B:        What things would you do differently if your pain wasn’t such a problem?

P:       I’d talk with them more, I’d encourage them, I’d play ball with them, I’d be there more for them.

B:       Are these things you could do even though your back pain is more than normal?

P:        Well… I couldn’t play ball with them.

B:       What about talking, encouraging them?

P:       Well, I suppose I could, but I’m scared I’ll just get angry with them.

B:       How would it feel just to try some new things anyway, even if you get irritable by the end?

P:       I suppose it would be a start, and they would at least see I tried. But I am still worried I’ll let them down.

B:      If you did let them down, would it negate having tried encouraging them at first?

P:      No, I guess it would give them a bit of the old me for a while.

There are roughly three steps in this exchange: (1) collecting information together; (2) examining this information together; (3)  inviting the patient to develop his own plans for doing something with that information. You’ll see that I didn’t attend to his pain, but instead focused on what he was afraid of – that his pain would make him grumpy, and that this would make his kids sad.  The conversation is all about discovering together, being curious and trying to learn about his experience from his perspective. By doing this together, we make long term changes because our clients learn how to discover what they’re thinking and doing, explore their thoughts and actions from a variety of perspectives, and generate their own answers.

Simply giving my patient/client the task to “do things differently” with his kids might have given him some homework, but it doesn’t help him learn about himself, nor about his main concern which is the effect of his back pain on his relationship with his children. This is definitely a psychosocial issue, but my patient didn’t reject what I had to say because we discovered it together and he gave me the information himself. It’s a very rewarding way to collaborate with someone.

Here’s a handout swiped from www.thebeckinitiative.org

A more in-depth web page of info on Socractic questioning and cognitive therapy is here

pastorale

Better ways to meet the needs of people with chronic pain


I’ve worked in chronic pain management in New Zealand for about 20 years. In that time I have never, ever heard of a chronic pain management centre without a waiting list. There are always more people than places for them to go. This situation hasn’t changed one iota, and it’s the same everywhere in the developed world. It’s also going to get worse because of the aging population with chronic health problems. Somehow, though, the urgency with which we need to address this problem just hasn’t reached health policy-makers and budget-holders. Chronic pain is still pretty invisible.

If tertiary care waiting lists are enormous, then who ends up taking on the majority of care? By and large it’s General Practitioners, who by their own admission don’t feel confident, and neither do they have sufficient time, to deal with the needs of people with chronic pain. There is conflict between the focus of a GP and that of the patient, and implementing back pain guidelines for example, has not been entirely successful (Breen, Austin, Campion-Smith, Carr & Mann, 2007; Coudeyre, Rannou, Tubach, Baron, Coriat, Brin et al, 2006; Williams, Maher, Hancokc, McAuley, McLachlan, Britt et al, 2010).

What can be done?

The strategy most commonly recommended is some form of stepped care approach. This begins with simple advice and simple analgesia. It’s usually carried out by a GP, or in some cases (such as accident patients in New Zealand), other primary care clinicians such as physiotherapists, osteopaths and chiropractors can also provide this – although not usually involved in prescribing.

When this approach fails, or after a certain length of time, the next step adds in  some sort of reactivation, involving a physiotherapist or similar, and perhaps a screening questionnaire to establish the presence or absence of risk factors.

When this fails, the person may then be seen by an interdisciplinary team or at a chronic pain management centre.

But someone this approach hasn’t worked – because, at least in Christchurch, people will have had their pain for roughly four years before finally being referred to the pain management centre. This delay might be because of limited chances of getting in to the service, or it might be because patients haven’t been to see their GP about their pain, or it might be because they’re still wending their way through the acute services in pursuit of a cure or cause for the pain. Whatever the case, it’s not good for people.

Some ideas rely on using technology to provide greater collaboration and communication between both the person with pain and his or her virtual team (Kroenke, Krebs, Wu, Yu, Chumbler & Bair, 2014). I think this idea has a good deal of merit, although in the article I’ve cited I think some opportunities were missed. In this study, participants were randomised into two groups – one group received usual care, while the other received automated symptom monitoring via voice-recorded phone calls or the internet, along with one face-to-face meeting with a nurse care management, who discussed medications with a pain physician, followed by a phone call to discuss the care plan, and two other calls, one at one month and one at three months. Additional calls were provided on the basis of symptom records.  Patients in the intervention group benefited, with reduced scores on pain severity and interference as recorded by the Brief Pain Inventory.

What this study missed doing was use clinicians to support increased functioning and manage emotional distress. While there would have been an increase in cost, the outcomes would have, I feel, justified this expense.

Who should deliver this kind of intervention? Well, for my money, I’d go for occupational therapists, physiotherapists, perhaps nurses, social workers and counsellors. People working at the limits of their scope of practice.

You’ll note I don’t think psychologists should be involved, and not because I don’t think psychologists are very good people – but in a stepped care approach, I think their skills should be reserved for people who also present with psychopathology, things like depression, anxiety, and so on. Let’s instead use clinicians who have skills specifically aimed at increasing engagement with normal activity (or occupation, if you want to be pedantic).

I think there are other ways allied health can be used, reducing the demand on medical time.

What about group clinics where people from two or three medical practices can meet together once a week with an occupational therapist and physiotherapist? A time when people can learn new skills, be encouraged to set goals, have social support and also have a chance to learn about their pain and how to live despite it. Combine this with the prescribing practices described in the Kroenke et al (2014) study, and I think you have a great beginning for a primary care approach for people with chronic pain. If you included the local pharmacist in the mix, you’d have a very effective approach that maximises the use of clinical skills amongst a group of people who sorely need help.

If individual patients needed extra help, they could arrange appointments at the group clinic, and be seen by clinicians who already know them, and who are in contact with the primary care GP.

Because, while its the person with pain we want to help, there are other goals as well – relieving the burden of care of GP’s, reducing the use of emergency departments for what is a chronic health problem, limiting the number of health professionals the person needs to see, and using what already exists in the community.

Another alternative is to regularly provide “education” sessions to people with chronic pain. Combine this with giving people a clear indication of what to expect from seeing each health professional, and leaving the responsibility to make an appointment with those professionals, and we have the beginnings of a system based on patient’s readiness. This has already been implemented in Western Australia.

The reason I focus on supporting GP’s and using allied health instead of medication management is that we know medication has a limited effect in many forms of chronic pain (Turk, Wilson & Cahana, 2011). We also know that even when pain is reduced, without addressing underlying fears and specific concerns, people may not return to normal activity. The majority of predictive factors for ongoing disability associated with chronic pain are psychosocial – pills don’t fix beliefs, entrenched behaviours, family situations and not having a job. And a seven minute consultation with a GP cannot possibly address these things either. What does help is skilled, effective and specialised help from clinicians who understand “doing”. People with chronic pain don’t need pills, nor do they always need mental health management – what they DO need is a focus on practical ways to get on with life. I think that’s a better way to meet the needs of people with chronic pain.

 

Breen, A., Austin, H., Campion-Smith, C., Carr, E., & Mann, E. (2007). “You feel so hopeless”: a qualitative study of GP management of acute back pain. European Journal of Pain: Ejp, 11(1), 21-29.

Coudeyre, Emmanuel, Rannou, Francois, Tubach, Florence, Baron, Gabriel, Coriat, Fernand, Brin, Sylvie, . . . Poiraudeau, Serge. (2006). General practitioners’ fear-avoidance beliefs influence their management of patients with low back pain. Pain Vol 124(3) Oct 2006, 330-337.

Kroenke, K., Krebs, E. E., Wu, J., Yu, Z., Chumbler, N. R., & Bair, M. J. (2014). Telecare collaborative management of chronic pain in primary care: a randomized clinical trial. Jama, 312, 240-248. doi: 10.1001/jama.2014.7689
10.1001/jama.2014.7689.

MacNeela, Padraig, Gibbons, Andrea, McGuire, Brian, & Murphy, Andrew. (2010). “We need to get you focused”: General practitioners’ representations of chronic low back pain patients. Qualitative Health Research, 20(7), 977-986.

Turk, Dennis C., Wilson, Hilary D., & Cahana, Alex. (2011). Pain 2: Treatment of chronic non-cancer pain. The Lancet, 377(9784), 2226-2235. doi: 10.111/j.1468-1331.2010.02999.x

Williams, C. M., Maher, C. G., Hancock, M. J., McAuley, J. H., McLachlan, A. J., Britt, H., . . . Latimer, J. (2010). Low back pain and best practice care: A survey of general practice physicians. Archives of Internal Medicine, 170(3), 271-277.

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How much attention to psychosocial issues?


I’ve been asked, from time to time, to give some sort of screening questions or questionnaires that medical practitioners can use in their practice, so that I can avoid covering so much psychosocial material, especially in my teaching job. I’ve struggled with this for many reasons, and have had a hard time pinning down why I’m not all that keen to do it. Now I don’t want to stop medical practitioners from considering psychosocial factors when they’re assessing pain, far from it – quite the opposite in fact! But at the same time I worry about developing a “Dummies Guide”.

Psychosocial factors can seem incredibly complicated and difficult to understand. Some practitioners think it’s well outside their scope of practice – yet they’re working in pain management where the biopsychosocial model is widely accepted. Some practitioners think it’s way too woolly to come to grips with, all this “soft” stuff about beliefs and emotions, yet some of the crunchiest statistical and neurobiological mechanisms are used to understand it.  Some practitioners still see psychosocial factors as relevant only as reactions to the real stuff going on in the tissues, which is a particular concept developed in the 1890’s by Strong, one of the American Psychological Associations presidents.

He divided the experience of pain into two parts: the physical sensation and the psychic reaction to this sensation (Strong 1895). Researchers maintained this view until the 1940’s, thinking that pain could be separated into the perception of pain, and the reaction to pain. In this view of pain, perception of pain was a neurophysiologic process involving relatively simple and primitive neural mechanisms while the reaction to pain was a complex psychophysiological process involving cognitive, learned experience, culture and other psychological factors to produce a variable reaction pain threshold (Bonica and Loeser 2001). While psychosocial factors were incorporated into the model, neurophysiological processes involved in transmitting “pain signals”, or nociception were believed to be the primary mechanisms. Thankfully Melzack & Wall (1965) began the revolution showing that pain is intimately connected with our brain’s way of determining bodily threat. Nervous systems including the brain are needed for pain to be experienced, but it’s a judgement call that is considered amongst the other competing goals relevant to the individual in that context.

There are some very good reasons, IMHO, for maintaining the complexity of the psychosocial concepts as we understand them today. These are my thoughts:

  1. Without truly grasping the idea that pain is an emergent experience and the sum of biological, psychological and social factors, it can become only too easy to focus only on psychological risk factors. By this I mean that although clinicians may learn about psychosocial yellow flags (risk factors for chronic disability), they way they’re construed is that they’re the reason for physical treatments failing. So, if the person doesn’t respond to usual treatment using physical modalities (including pharmacology and needles and exercises) then clearly the issue is now psychosocial – and that means “I don’t have to deal with this”. (Thanks to a very good physiotherapist for telling me that this is how she learned it until she studied more). This viewpoint clearly reverts to the Cartesian dualist model.
  2. By only considering psychosocial factors as risk factors, clinicians are likely to forget that everything that is said, done and even the treatment context has an influence on outcome. Risk factors may be what the person with pain brings with them into a treatment setting, but if clinicians forget that treatment is an interaction between at least two people, they may forget that they too have beliefs, come from a particular culture, have developed a clinical/professional persona, and that all of these things and including what they say and how they say it affect the patient. These things matter – they affect what the person with pain understands about what is happening to them, and also what might happen to them in the future.
  3. Sometime when risk factors alone are considered, clinicians can fail to recognise individuals bring strengths with them as well. After all, people who come to see a clinician have got themselves up, traveled to an appointment, and carried out the tasks of everyday even though they have pain: they have coped at least to a degree. If we only attend to risk factors, we probably don’t think about how well a person is doing, or what they can do to enhance their wellbeing, or build on what’s already working for them.
  4. Psychosocial factors are definitely complex. That’s not necessarily a reason to try to dumb them down. After all, human body systems are also complex, and we don’t see attempts to simplify things like motor control, or bone remodeling or neurobiological systems and their response to pharmaceuticals. I’m sure that if I asked a medical practitioner to sum up the “things I need to know about prescribing” in a “dummies guide” I’d be shot down in flames, and rightly so. Frankly there just are some complicated things we need to learn if we’re going to work effectively with people who have pain, and particularly people who have chronic pain.
  5. Finally, I’m loathe to simplify psychosocial concepts because I don’t know where the clinicians I teach (or blog to) practice. I don’t know their contexts, and I don’t know what they already know. I don’t think it’s right to assume that everyone works in primary care, or secondary care. I don’t want to assume that everyone has a team to refer to. I don’t think I should decide what is and isn’t relevant to a clinician. And I think clinicians are smart enough to work out what they want to do with psychosocial material. I also know from learning theory that by processing and using information, we begin to integrate that knowledge rather than treating it as some sort of “add-on” to daily practice.

The fact is that for most health professionals, with the exception of those working primarily in mental health, psychosocial concepts are not taught nearly as thoroughly as biological ones. I can assume that most clinicians working in pain management know anatomy, physiology of normal healthy bodies, understand concepts like inflammation or bone remodeling or nerve transmission.

Unfortunately, I can’t say that most clinicians remember Psych 101 from first year, and so I need to go through basics like operant and classical conditioning. I need to review things like measurement concepts. I need to help people recall attention and social learning theory and become familiar with self efficacy as a concept, along with internal and external locus of control. And that’s before beginning to look at constructs like catastrophising.

Because if I don’t do a good job, the idea of catastrophising, for example, becomes yet another pejorative label to give to someone who doesn’t respond to “normal” treatment. Another way to place the blame on the individual with pain rather than thinking about what and how clinicians do their job. I’d rather that people became more familiar with the complexity of pain and began to attend to what they do.

 

An apology to the Australasian Faculty of Musculoskeletal Medicine


Some months ago I wrote a blog post about fibromyalgia, and mentioned that a group of clinicians seem to believe that psychosocial issues are not important when nociception can be abolished.  A commentator took issue with my comment, and I very quickly amended the post. You can read the amended version here.

I also offered an invitation to the people who were offended by my statement that : if you’re able to demonstrate HOW you integrate biopsychosocial approaches in your practice, I’ll publish it. 

Today, however, I found out that the AFMM has written to the University and wishes me to be censured, and that I should apologise for that blog post.

I wrote that post pointing the finger at a specific group of clinicians, and I apologise for causing them offence.  I sincerely do not want to point the finger at any clinician who integrates biopsychosocial aspects of pain and pain management into their practice.

As I stated in my amendment to that post, it’s simplistic to suggest a single discipline is at fault, but any profession that does not address the person as a whole (person-in-context) and particularly the psychosocial factors (because they’re so strongly associated with longterm disability associated with pain), needs to take a good look at the broad pain literature.

The AFMM is aware that the post was immediately amended. The invitation to publish a post showing how the psychosocial factors are addressed by this group of clinicians remains open – I welcome open discussion because the practicalities of HOW to incorporate all three elements of the model needs to be discussed widely to help reduce the risk to people with pain, especially those who are at risk of developing ongoing disability associated with their pain.

That’s the beauty of social media – we can ALL contribute to the discussions, clinicians, academics and patients alike.  I’ve had a wonderful response to posts I’ve written over the years I’ve been blogging (since 2007). Over 1 million hits from all around the world in that time, many from patients but even more from clinicians.  I see blogging as a really useful way to extend the conversations beyond the closed doors of the clinic, and the offices in the ivory towers, and the associations and faculties and other regulatory bodies.  Some people don’t like what I post, others welcome what I write – whatever reaction in response to a blog post means people are thinking about chronic pain. And that is a good thing.

 

through the heavens

Complex regional pain syndrome: yes, it’s complex


ResearchBlogging.orgComplex regional pain sydrome or “CRPS” (pronounced CRIPS) is an enigma. It’s complex. It involves different body systems. It’s very, very painful, and it can be incredibly disabling. It has had lots of different names over the years – in 1982 when I trained it was called “causalgia” or “Sudeck’s atrophy”, but in 1993 the International Association for the Study of Pain developed guidelines for diagnosing and managing this complex pain problem.

Since then we’ve heard a lot about CRPS, at least those of us working in the pain management field have. I am not so sure that the general public, or even healthcare professionals who don’t deal primarily in pain will have heard nearly so much.

What is it?

CRPS is a pain problem that may develop spontaneously (roughly 10%), but more often develops after what seems to be a trivial kind of injury. I’ve seen people develop CRPS after a cat bite, an abrasion to an ankle, an undisplaced metatarsal fracture, and a rose bush scratch. It can also develop when a limb is immobilised (for example after a fracture or sprain), after surgery, and stroke. What people will experience is very high pain intensity (more than normally expected with a minor injury), changes in skin colour (either pale, blue, or red or mottled), swelling, hyperalgesia (increased pain with usually painful stimulus), allodynia (pain with usually nonpainful stimulus), and changes to movement. Pain doesn’t conform to a dermatomal or myotomal pattern, but might be like a glove, or a sock, it may spread far from the original insult, can even go to the other side of the body, and can lead to skin ulceration and tissue breakdown.

That’s in the worst case, of course. Many CRPS begin with fairly vague symptoms that can quickly become severe, while others will begin with very severe symptoms but rapidly resolve. It usually begins, however, with a burning, tingling, electric shock type of pain (neuropathic type pain).

It’s hard to identify the number of people who develop CRPS partly because it can resolve very quickly in some people, and partly because it’s a complex problem to diagnose – not the least because it can occur in acute treatment settings where perhaps clinicians are not fully aware of the potential for a chronic pain problem to develop. The open source paper I’ve cited indicates that two studies show an incidence of 5.4 – 26 per 100,000 people, and a prevalence of 20.57 in 100,000, with a female:male ratio of 3.4-4.0:1. Two more recent studies found 3.8% of 1549 people with wrist fracture developed CRPS within four months, while another 7% of 596 people with wrist, scaphoid, ankle, or metatarsal fracture.

What this means is there are a lot of people who experience CRPS after what usually looks like a simple fracture. And of course, many of these cases resolves spontaneously, and it’s not yet known why some fail to resolve and can turn particularly nasty.

What are the mechanisms?

Here the contenders: ” disturbances involving abnormal response to tissue injury, peripheral and central pain sensitisation processes, neurogenic inflammation, endothelial dysfunction, disturbed sympathetic-afferent coupling, hyperalgesic priming, somatosensory cortical reorganisation, genetic predisposition, and even some degree of autoimmunity”.

That’s quite a few! No wonder it’s called “complex”!

What do we do about it?

Unfortunately, even though there have been many studies looking at ways to treat CRPS in a recent Cochrane review the conclusion was that most approaches are not very strongly indicated. In other words, the field is wide open.

Moseley and associates in Adelaide have certainly made waves about using “brain training” to address cortical reorganisation with CRPS, but an overview of recent meta-analysis found that graded motor imagery (asking an individual to imagine progressively more complex movements of their affected limb), laterality training (asking an individual to identify left or right hands/feet or other body parts amongst more and more complex settings) and mirror training (using a mirror to reflect the unaffected limb, to “fool” the brain into seeing it as the affected limb but not experiencing pain), were somewhat useful when compared with “usual care” (whatever that is!), that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo, and low quality evidence that physiotherapy and occupational therapy have positive effects but after one year, have limited effect when compared with social work support (O’Connell, Wand, McAuley, Martson & Moseley, 2013).

What does this mean? Well, we don’t have very much to go on.

Here’s my take on managing CRPS based on my clinical experience and reading this literature.

All treatment is a balance of risks and benefits. The risks associated with having substances put into a body are well-known, and the findings from O’Connell’s review suggest that there are adverse affects with all of the pharmaceutical approaches, along with some benefits. The studies weren’t methodologically strong on the whole, and many of them didn’t use patient-oriented outcomes, particularly quality of life measures (remember this!). I think if I had CRPS I’d be happy to try some of the infusions – but I’d want to have an end-point in mind. If it didn’t change my pain so I could engage in using my body part I’d be likely to stop within a month.

Because graded motor imagery, laterality and mirror therapy are all non-invasive, I’d be happy to try these. I would need to be prepared for some weird effects – having put my hand into a mirror box already and experiencing some odd perceptual effects I’d be prepared for these to be far greater if I had CRPS. I’m also pretty slow at laterality identification. Once again I’d be keen on establishing, from the outset, a time frame for response – but these approaches appear relatively safe. I have to say that patients I’ve worked with have reported increased pain at times, and “feeling weird” or slightly disoriented.

I would also be ready to try a treatment that wasn’t included in this review – and I think it didn’t feature because it was a very, very small sample size, a repeated measures “N = 1″ trial using single subject experimental design. This was a graded exposure in vivo (not graded imagery) following Vlaeyen’s fear-avoidance approach. In contrast with GMI and mirror therapy, this approach addresses avoidance rather than pain intensity (deJong, Vlaeyen, Onghena, Cuypers, den Hollander & Ruijgrok, 2005) .  In the study, people were asked to develop a hierarchy of feared and avoided tasks, and were introduced to those tasks beginning with the least feared. The aim wasn’t to reduce pain but instead to reduce avoidance and increase use of the affected limb.

Why would I try this? Because the thing I’m most worried about is being confident about doing things. Pain is often not able to be reduced – it happens in many chronic pain conditions. Pretty much all the other interventions are aimed at reducing pain, and my experience with working with people who have pain reduction as the focus is that this can (not always) lead to a delay in “getting on with life as it is now”. Instead, people invest a lot of energy and time into trying to “get back to normal”.

Of course it’s a personal question: how long do you wait before deciding it’s more useful to get on with life as it is, or stay looking for a chance to go back to “normal”. I can’t answer that for anyone else except myself – but I wonder if people are given a fair chance to think about the possibility that a person CAN live well with their pain?

 

de Jong, Jeroen R, Vlaeyen, Johan WS, Onghena, Patrick, Cuypers, Corine, Hollander, Marlies den, & Ruijgrok, Joop. (2005). Reduction of pain-related fear in complex regional pain syndrome type I: the application of graded exposure in vivo. Pain, 116(3), 264-275.

Fukushima, F.B., Bezerra, D.M., Villas Boas, P.J.F., Valle, A.P., & Vidal, E.I.O. (2014). Complex regional pain syndrome BMJ, 348 (g3683 )

O’Connell Neil, E., Wand Benedict, M., McAuley, James, Marston, Louise, & Moseley, G. Lorimer. (2013). Interventions for treating pain and disability in adults with complex regional pain syndrome- an overview of systematic reviews. Cochrane Database of Systematic Reviews, (4). http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD009416.pub2/abstract doi:10.1002/14651858.CD009416.pub2

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Managing pain is an experiment


I’ve been thinking a lot about clinical reasoning recently.  There’s been a lot written about clinical reasoning, but not as often applied to pain management, which is a shame.  One definition of clinical reasoning is that it is a “complex process that uses cognition, metacognition, and discipline-specific knowledge to gather and analyse patient information, evaluate its significance, and weigh alternative actions” (Simmons, 2009).  It’s often used synonymously with with decision-making and clinical judgment. It’s not diagnosis alone, although it includes diagnostic reasoning, and it includes decisions made how to assemble the information collected into a form that can be used to make decisions. Got that?!

OK, so why do I think that managing pain is an experiment? Is it just trial and error?

Let me unpack some of this for you.

For something to be an experiment, we need to “perform a series of actions and carefully observe their effects in order to learn about something”, according to the Merriam Dictionary. It usually involves manipulating one or more variables, with the intention of influencing another dependent variable. There are often a number of unknowns, and other variables that need to be controlled to ensure that only the one variable is influencing the outcome. Of course, in people and in the real world, this is nigh on impossible. But the principles apply.

In chronic pain management, there are many factors involved – this is why we often work in interdisciplinary teams, because no single discipline can possibly attend to all the factors that may be present. Some of the variables are known. We know, for instance, that women are more often affected by chronic pain than men. Some of these are less well-known: we may not realise that some clinicians treat women with chronic pain differently from men with the same problems (Hirsh, Hollingshead, Bair, Matthias, Wu & Kroenke, 2013).

We arrive at a problem with ideas in our heads based on our training, our knowledge base, recent patients we’ve seen, new information from journals or conferences or blogs, striking experiences such as a person who reacted badly to a treatment, or someone who responded really well. We also bring our ideas of what matters in a clinical presentation in the form of a model. Models are simply representations of the relationships between variables thought to be important. We all carry them, whether we’re aware of them or not. This means that some variables are therefore thought to be less important, and are perhaps disregarded.

There are some certainties when working in acute pain management: we know, for example, that if we remove nociceptive or inflammatory input as soon as possible, most of the experience of pain reduces, leaving the person with memories and beliefs about what should happen if they ever have that kind of pain again. So, if a bone is broken, we know that if it’s aligned and stabilised, most of the pain disappears. If there’s an infection in a finger, we remove the splinter, get rid of the pus and the finger heals with pain subsiding. And person experiencing pain processes what has happened and assembles information about what should go on if a similar event happens again. People around that person also understand basically what is going on, and what to expect. And their idea of what they should do is also developed.

But chronic pain is different. Chronic pain doesn’t follow the rules of acute pain, and although there have been some strides forward in understanding it, we don’t have a simple mechanism-based approach to get rid of the pain and allow the person to get on with life, in most instances.

Instead we have a person who is experiencing something mysterious, something that doesn’t make sense, and doesn’t follow the rules. Additional variables become far more important than they are in acute pain, while some variables that are vital in acute pain become less significant.

What’s different and why does it matter?

Apart from the less clear-cut underlying neurobiological mechanisms involved in the pain experience, chronic pain affects people as they engage in normal occupation (see this wikipedia entry for more information about why occupation is important). Occupation, or the normal daily activities we do within the context of our lives, informs and is informed by our sense of self identity. When we can’t do the things we need or want to do in daily life, we become aware of losing something important: our sense of self. People experiencing chronic pain encounter challenges and threats to self identity as they do the normal things of daily life. They may find it hard to sit to read or watch TV, they find it hard to clean their teeth, they may have trouble attending work, they can have difficulty sleeping, or going out socially – all those things that people do that reinforce a sense of self and purpose in life.

While “taking the pain away” may help a person return to many of their usual occupations, it fails to address the underlying problem of loss of identity. Can this person trust that this threat to identity has really gone? How has this person changed as a result of this experience? What meaning has this person made of their experience?

This is far more complex than simply abolishing nociception and inflammation. It’s much more about considering the factors that help a person make sense of their pain, weave that meaning into their sense of self identity, abandon aspects of self that can no longer be sustained, generate new understanding of capabilities and purpose and go on to engage in what is important in their lives.

Because (a) there are so many variables, (b) each individual’s past learning is different, (c) each person’s sense-making is unique and (d) each person’s future and the way they express their sense of self is distinctive and particular to them, we as clinicians can never just apply the same reasoning as we have to another person.

This means we need to generate models that allow us to gather information across many different domains that may influence why this person is presenting in this way at this time, and then carefully tease out the relevant factors that will allow us to collaborate with that person to become less distressed and less disabled – and much more themselves. We need to carefully monitor “what happens” when we suggest an intervention. We can’t assume that the end point achieved for one person is the same as the end point for another. We need to travel from information collection right through to culmination of the experiment which isn’t just when we stop treating the person.

Managing pain is an experiment for everyone. We, clinicians and patients alike, DO NOT KNOW what will “work”. Being honest and transparent about this might help both to collaborate and avoid dogmatism.

 

Some interesting readings on gender, ethnicity, and depression on clinical judgement:

Bernardes, Sonia F., Costa, Margarida, & Carvalho, Helena. (2013). Engendering pain management practices: The role of physician sex on chronic low-back pain assessment and treatment prescriptions. The Journal of Pain, 14(9), 931-940.

Parsons, S., Harding, G., Breen, A., Foster, N., Pincus, T., Vogel, S., & Underwood, M. (2012). Will shared decision making between patients with chronic musculoskeletal pain and physiotherapists, osteopaths and chiropractors improve patient care? Family Practice, 29(2), 203-212.

Hirsh, A., Hollingshead, N., Bair, M., Matthias, M., Wu, J., & Kroenke, K. (2013). The influence of patient’s sex, race and depression on clinician pain treatment decisions. European Journal of Pain, 17(10), 1569-1579.

MacNeela, Padraig, Gibbons, Andrea, McGuire, Brian, & Murphy, Andrew. (2010). “We need to get you focused”: General practitioners’ representations of chronic low back pain patients. Qualitative Health Research, 20(7), 977-986.

Scott, N., Moga, Carmen, & Harstall, Christa. (2010). Managing low back pain in the primary care setting: The know-do gap. Pain Research & Management, 15(6), 392-400.