“You’re just being a hypochondriac” – health anxiety & chronic pain

I think that label has to be one of the most feared amongst the people I see with chronic pain.  To be judged as being obsessed about nonexistant illnesses when actually having pain every day must be incredibly difficult to cope with.  At the same time, being anxious about health and having mistaken beliefs about the meaning of symptoms can be part of both having chronic pain and having health anxiety (the condition previously known as hypochondriasis).  And the temptation some health providers have to say “Oh just go and pull yourself together and stop worrying”  is both unhelpful and part of the problem!

I’ve been reading about health anxiety as I look at ways to identify and work with people who are fearful of experiencing pain while at the same time have been told, and to a certain extend believe, that they’re not harming themselves.

One of the major contributors to a cognitive behavioural understanding of health anxiety is Salkovskis , Professor of Clinical Psychology and Applied Science at the Institute of Psychiatry, Kings College, London.  I was lucky enough to attend a health anxiety workshop based on his work last year, and some of the strategies I learned there were really helpful. I’ll discuss them later this week.

The model he proposes for health anxiety is fairly similar to those for obsessive compulsive disorder and panic disorder.  It’s also not that different from the ‘fear-avoidance’ or pain-related anxiety and avoidance model that so many of us are familiar with.  In it, there are two main characteristics that need to be addressed to help the person cope with their anxiety about body sensations.

1. Misinterpreting body symptoms as something indicating a serious or threatening health problem
2. Using ‘safety-seeking behaviour’ to cope with this anxiety, but in fact maintains it

An example might help.

Joe Bloggs, (not his real name!) experiences a queasy stomach, often just before he eats.  He is certain this means he has a stomach ulcer, or that if he eats, he will vomit.  As a result, he delays eating and only eats once a day and then only tiny amounts of food.  As he swallows, he monitors the feeling of the food passing down to his stomach, and his stomach feels full and tight.  He starts to feel nauseous.

Does this look a bit familiar?
At the top is the belief that, for example, ‘these symptoms should not be there, they mean something horrible is happening to me’, this leads to hypervigilance, or scanning the body for possible symptoms of ill health, and this leads to misperception of normal symptoms as if they’re something abnormal. In ‘Joe’, you can see that it’s normal to feel a bit queasy if you haven’t eaten all day, but to him it’s a sign that he’s unwell and should avoid eating. He’s also very aware of the sensation of food as he swallows, and interprets this as abnormal rather than how food normally feels!

The symptoms that are noticed then generate anxiety and uncertainty about what is going on in the body, leading to ‘safety seeking behaviours’. In ‘Joe’, this has lead him to restrict his food intake to once a day, making him even more likely to feel queasy and to experience stomach cramps and bloating after he’s eaten. By restricting his food intake, he believes he is preventing or avoiding the strange symptoms when in fact he’s more likely to experience them – and he’s monitoring his internal state all the time. When he does experience these sensations, he takes this as confirmation that he was right to avoid food during the day, and there must be something wrong with his digestive system.

In the same way, people with chronic pain can misinterpret not just their pain symptoms, but also physiological arousal (such as nausea, sweating, heart racing and breathing changes, cold extremities and feeling nauseous) as definite signs ‘something is wrong’.  It’s especially noticeable in people with noncardiac chest pain, but it’s present in many people with pain in other parts of their body.

By monitoring their body all the time, and being afraid of what they find, people with high health anxiety confirm their worst fears – there is something strange going on!

Some of the other ‘safety behaviours’ people with health anxiety use are:

• not moving much
• seeing doctors who then give them investigations, maybe MRI, CT, X-ray, nerve conduction
• checking their bodies all the time
• palpating various body parts for pain
• examining body parts for colour change, temperature change
• asking other health providers to examine them
• going onto the internet (!) and reading forums, web pages, searching for syndromes that ‘explain’ what is going on

Reassurance doesn’t reassure!  In the case of health anxiety, it serves just to reinforce that something strange is going on – after all, the symptoms are there.

There are several ways to assess for health anxiety.  One is the Short Health Anxiety Inventory, described in the paper by Abramowitz, Deacon and Valentiner (2007), and also in Salkovskis, Rimes, Warwick & Clark (2002) where it appears in full.  Another is the Beck Anxiety Inventory.  Remember: don’t use these if you’re not going to learn what they mean and how to interpret them!

I’m still mulling over whether they tap into the areas I’m concerned about in the people I see.  I’m not sure – but I can see how this model applies in some people with chronic pain, and how the strategies I learned might be useful.  Stay tuned and I’ll discuss those strategies and how I’ve used them in my sessions with people.

Abramowitz, J., Deacon, B., & Valentiner, D. (2007). The Short Health Anxiety Inventory: Psychometric Properties and Construct Validity in a Non-clinical Sample Cognitive Therapy and Research, 31 (6), 871-883 DOI: 10.1007/s10608-006-9058-1

Fear of pain, not always fear of harm

I know it’s actually Friday Funnies day, but before I go there I want to explore something I’ve been observing for a while.  Over the past four or five years, the TSK (Tampa Scale for Kinesiophobia) has been a really popular instrument for identifying and monitoring pain-related anxiety and avoidance.  It has been found to have a two-factor structure, ‘harm’ and ‘activity avoidance’, and has been used as both a predictive measure and an outcome measure that is strongly associated with disability.

What I’ve seen though, is that many patients have a fairly low score overall on the TSK, particularly characterised by a low score on the ‘harm’ scale.  At the same time, these patients have been among the most fearful of the patients I see of experiencing pain and most avoidant of specific movements.  Something is missing here.  I should add that the TSK is not administered alone, it’s included in a battery of questionnaires, and that along with the questionnaire responses, interview, observation and functional assessments are also carried out.

What I seem to see is that this group of people don’t *think* they’re fearful of harm – in fact, they almost all say they’ve been told, and accept that they’re not doing any damage to their body, but at the same time they’re strongly avoidant of movements that provoke their pain.  When I ask them what might happen if they do the movement they’re avoiding, often they’ll say something like ‘I don’t want to increase my pain, it hurts too much, and I’ll never sleep’.  Yeah, catastrophising.

Some of the other measures do correlate with their avoidance – disability measures, of course; low mood quite often; low pain self efficacy; and very often high catastrophising on a couple of the other measures we use.

What I think I’m seeing is that in a group of patients who often have had prior pain management input, there is a ‘head knowledge’ (ie they’ve had ‘information’ or ‘education’ about hurt vs harm), but they haven’t developed at least two things:

1. Self efficacy for coping with activities despite pain
2. Experience of successfully and consistently carrying out activities despite fluctuations in pain, and especially doing activities that provoke pain

And importantly, their underlying level of catastrophising doesn’t seem to have been addressed.  Or at least that’s one hypothesis.

A measure I used to use a lot, but seems to have fallen out of favour is the Pain Anxiety Symptoms Scale (especially with ACC in New Zealand publishing a ‘Compendium of Pain Measures’ that seems to have ranked questionnaires on somewhat arbitrary factors).  The PASS is a scale originally developed by McCracken and colleagues, and has four factors: cognitive anxiety, fearful appraisal, activity avoidance and physiological arousal.  There is a shorter version recently used by Carleton & Asmundson (2009).

This was a useful measure to me because it helped to identify the way in which anxiety about experiencing pain might be affecting the individual, and suggested some ways to address this.  For example, if the person scored very high on cognitive anxiety, it might be difficult for them to think of coping strategies during pain flare-ups.  If the person indicated high physiological arousal, helping them develop effective relaxation strategies often gave them tools to manage the situation with feeling ill.

It might be helpful to use the PASS with these patients who don’t believe they’re fearful of pain, but do avoid.  But I’m still not sure that this taps into exactly what underlies the avoidance behaviour.

Why am I worried about this? Well, if I’m trying to identify who to select for specific exposure therapy, the TSK has been suggested as a useful screening tool – and one that can demonstrate change over time.  But if the person doesn’t reach a certain ‘cut-off’ point, this approach might be overlooked.  If I use the PASS, I might identify the ‘what happens’ aspect, but I might not identify the avoidance component.  If I only look at catastrophising, I might reduce catastrophising, but fail to help the patient successfully engage in *real* activity despite pain.

I’ve pondered whether there is another way of approaching the assessment of fear and avoidance of pain – some combination of the activity avoidance subscale of the TSK or the PASS, with a measure of fear of pain.  Maybe something like Fear of Pain Questionnaire (Short Form), but I’m not sure.

In terms of what to do for treatment: I wonder whether the increasing emphasis on cognitive strategies, or ‘education’ about chronic pain has reduced the opportunity for behavioural approaches to be included in pain management.  For some psychologists, behavioural approaches like reducing pain behaviour and exposure therapy appear to have become a little passe.  This can leave physiotherapists and occupational therapists (who may not always have had the background knowledge about how to conduct exposure therapy) in the position of trying to help a rather reluctant patient start to do the very things they’ve been avoiding.  And while ‘just doing it’ is a behavioural strategy, good knowledge and skills about the cognitions the patient has and how to work with them is vital, or the response may be to reinforce the patient’s beliefs that they were indeed right to avoid those activities!

Exposure therapy is not the same as ‘graduated reactivation’. It’s also not the same as the approach used to reduce sensitivity in a CRPS limb – which should probably more appropriately be called ‘graded desensitisation’.

Anyway, back to my musings: my concern is that ACC in New Zealand is starting to specify the questionnaires that ‘should’ or ‘must’ be used in treatments.  And the risk is that on the basis of cut-off scores for the TSK, these highly disabled patients might not receive the sort of cognitive and behavioural input they need.  As well, there are few ways to measure progress over time, apart from the level of engagement in tasks.

As we all know well, there are many different reasons for people to fail to reduce their disability despite having had effective pain management – but for an eager case manager (and some ill-informed clinicians), failure to reduce disability can be attributed to ‘lack of motivation’, or ‘failure to comply with treatment’, or something equally unhelpful.  Without a good clinical model, effective measurement instrument, well-conducted treatment and adequate support, I worry that we risk focusing too much on the measurement properties of the TSK in our clinical practice, and that the pain-related anxiety and avoidance (Fear-avoidance) model doesn’t always explain the situation for our patients.

As usual, more research required – someone’s PhD I hope! In the meantime, I’m hoping to carry on pondering, and wandering through the research papers to find out if anyone else has come up with a model and/or measurement tool that might be useful.  If you’ve got one – drop me a line, I’d love to know!

McCracken LM, Zayfert C, Gross RT: The Pain Anxiety
Symptoms Scale: Development and validation of a scale to
measure fear of pain. Pain 50:67-73, 1992

CARLETON, R., & ASMUNDSON, G. (2009). The Multidimensionality of Fear of Pain: Construct Independence for the Fear of Pain Questionnaire-Short Form and the Pain Anxiety Symptoms Scale-20 The Journal of Pain, 10 (1), 29-37 DOI: 10.1016/j.jpain.2008.06.007

Ostelo RW, Swinkels-Meewisse IJ, Knol DL, Vlaeyen JW, & de Vet HC (2007). Assessing pain and pain-related fear in acute low back pain: what is the smallest detectable change? International journal of behavioral medicine, 14 (4), 242-8 PMID: 18001240

More on anxiety and pain – pain-related anxiety

It seems obvious that something unpleasant is something to be avoided – and if we’re meant to avoid it, we’re likely to be just a little bit afraid of it. Yesterday I talked about health anxiety in general, and today I want to touch on a specific sub-group of health anxiety – pain-related anxiety.

Many people will be familiar with pain-related anxiety and avoidance, the model of so-called ‘fear avoidance’ that is a compelling explanation for how so many people become deactivated and disabled when they have persistent pain. It might be a surprise to some that the term ‘fear avoidance’ is actually not technically correct! There are two parts to the phenomenon: fear (or really, pain anxiety) and avoidance. It’s possible to be fearful or anxious about something but not avoid it – and it’s the avoidance part that creates the disability, which is why we are so keen to get people to DO things, even if they’re afraid.

If we look at yesterday’s post about anxiety, and review Beck’s cognitive model of anxiety, we can see that it’s really about how a person perceives a situation rather than the facts of a situation that is the problem in health anxiety. With an increased perception of the probability that something horrible will happen, multipled by the ‘awfulness’ factor we can begin to understand how some people will be really afraid of having pain. This is modifed by their personal resources and ‘rescue’ factors which might be things that other people do to reduce the person’s distress or decrease the ‘awfulness’ factor.

Pain anxiety is somewhat more problematic, IMHO, than general health anxiety. The reason being that so many conflicting messages are available in the community about having pain. It’s all around us that to have pain means ‘something is wrong’ – we’ve all grown up with this belief, developed through our own experiences with acute pain, and the media and almost all health care pushes the idea that we should not have to experience pain. Which is all very well except that it creates an unrealistic expectation for people who have persistent pain that doesn’t respond to pharmacology, surgery, injections or anything else that is ‘done to’ the person. Because like it or not, we don’t yet have all the answers to all the health care problems – just think of the common cold!

In the case of classic health anxiety, there is usually a nice clear-cut statement from a medical person that ‘there is nothing wrong’, health investigations are clear, there is nothing sinister going on, the person is not going to die from something nasty. In pain? Well all around us there are messages saying that ongoing pain is not OK, and it only takes one practitioner to suggest that there is some removable cause for their pain that will take the pain away for a person to start to worry again about their pain (and start looking for ‘the cure’).

It’s understandable. Pain isn’t pleasant – that’s part of the definition of pain! But people don’t die simply from having chronic pain. It can be depressing, distressing, and invade much of life, ruining the quality of life in many spheres – but many many people do cope well despite having pain, and have rewarding, fulfilling lives even though they have persistent pain.

The difference between being anxious about pain and living well with pain? Not so certain actually. We do know a lot about people who have pain and look for treatment. In fact, we know heaps about these people. We don’t know very much about people who don’t look for treatment simply because they don’t turn up at treatment centres. As a result, we don’t really know how people who live good lives despite their pain actually do so.

Maybe this group of people have developed ways of viewing their pain that reduces the ‘awfulness’ factor, maybe they have more resources, maybe they can be flexible about how they go about achieving what is important in their lives, maybe their goals are different, maybe they don’t have some of the vulnerability factors discussed in the paper I’ve identified today.

The fact is, we simply don’t know. Almost all our research on pain and coping is on people who are worried about their pain, anxious about it, and want it gone. Our treatments are based on models like Beck’s and Vlaeyen’s, that are developed from our understanding of people who don’t live well with their pain. So we focus on reducing the level of catastrophising, reducing the use of ‘safety behaviours’ and ‘checking’ and ‘reassurance’, increasing the use of active coping, help people confront what they fear and find out that it doesn’t make life unbearable and intolerable.

This paper by Carleton, Abrams and colleagues identifies that pain-related anxiety might be a separate type of fear that exists alongside other anxiety types – blood/needle phobia, panic, OCD and so on.

It might have taken a while to recognise it, but maybe it’s important to recognise that for a reasonably large group of people, having pain, or anticipating that pain will be experienced, is such an anxiety-provoking problem that this fear needs to be treated rather than the pain itself. This is why simply removing the pain doesn’t solve the problem – in the case of a simple phobia, just not being able to see a spider doesn’t remove the fear of there possibly being spiders under the bed, in the garden, in the shed! In fact, reassurance that there are no spiders doesn’t actually help if the person still looks for one. In the same way, removing pain through anaesthetic blocks or medication or even surgery doesn’t help if the person still fears having the pain – because they’ll be checking their body, any investigations and probably any other body sensations to try to make sure there is nothing going wrong. You can be sure that any slight change in body sensation will be monitored, and in someone who is anxious about having pain, be evidence that there is something wrong, eliciting all those worries and leading to avoidance.

What to do? Not sure yet – while we can help individuals, it only takes one person to re-establish that fear by inadvertently suggesting that ‘something is there’, or that pain ‘must be’ abolished – and the whole anxiety process starts again. More on this tomorrow!

Carleton, R., Abrams, M., Asmundson, G., Antony, M., & McCabe, R. (2009). Pain-related anxiety and anxiety sensitivity across anxiety and depressive disorders☆ Journal of Anxiety Disorders, 23 (6), 791-798 DOI: 10.1016/j.janxdis.2009.03.003

Pacing and avoidance in fibromyalgia

The recent emergence of study into ‘pacing’ or activity regulation in pain management is a welcome addition to our knowledge of this coping strategy. Although pacing has been described and included in many self-help books as well as clinical texts as an effective strategy for people with chronic pain to use, the research base for its use is pretty skinny (see Gill and Brown, 2009). McCracken and Samuels (2007) found that increased use of pacing was associated with higher disability and less acceptance, while Nielson and Jensen (2004) found that it was associated with lower disability in people with fibromyalgia.

The study I’m looking at today, by Karsdorp and Vlaeyen, looked in whether pacing specifically was different from ‘other behavioural strategies assessed with the Chronic Pain Coping Inventory (CPCI), such as guarding, resting, asking for assistance, relaxation, task persistence, exercise/stretch, seeking social support, and coping self-statements.’ The second part of this study looks more closely at whether ‘pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI.’

The methodology was pretty simple: a random sample of around 400 patients from the Dutch Fibromyalgia Association responded to being sent a set of questionnaires, a response rate of 68%. 388 women; mean age = 47.58 years, SD = 10.18, range 18–75 years. The mean duration of pain was 160 months (SD = 116.79). Thirty-four percent of the patients had a job and 39% of the patients received income from a disability income insurance.

The questionnaires used were the Chronic Pain Coping Inventory (Jensen, Turner, Romano & Strom, 1995). CPCI comprises 70 items measuring 9 behavioural strategies: Guarding (9 items), Resting (7 items), Asking for Assistance (4 items) , Relaxation (7 items), Task Persistence (6 items), Exercise/Stretch (12 items), Seeking Social Support (8 items), Coping Self-statements (11 items), and Pacing (6 items).
Pain intensity was measured using VAS, catastrophising was measured using the Pain Catastrophising Questionnaire (Sullivan, Bishop & Pivik, 1995), functioning was measured using a fibromyalgia specific Fibromyalgia Impact Questionnaire (FIQ-PH) (Burckhardt, Clark & Bennett, 1991), and the Pain Disability Index (Pollard, 1984) were used. Note: these were translated into Dutch for this study.

Thank goodness for statistics! Multiple regression analysis was undertaken – two hierarchical regression analyses were conducted with physical functioning or disability as the dependent variables. The first step included gender, age, and education, pain intensity, and pain catastrophizing. At the second and third step, the 8 CPCI subscales and the pacing subscale were entered, respectively.

What did they find?
At step one in the regression analysis, the demographic variables, pain intensity, and pain catastrophizing explained a significant amount of variance in physical functioning.

Older patients, patients with more severe pain, and patients who tended to catastrophize about pain reported greater physical impairment and more disability.

At step two, the 8 CPCI subscales without the pacing scale reduced the effect of age and pain catastrophizing to zero and significantly explained an additional amount of variance in physical functioning.

At step 3, the pacing subscale did not explain a significant additional amount of variance in physical functioning, leaving, in the final model, patients who avoided physical activities and asked for assistance to manage their pain reported greater physical impairment and more disability, even when controlling for demographic variables, pain intensity, pain catastrophizing and the other behavioural strategies.

So, what does this mean?
Remember, the first question was whether pacing forms a separate scale within the Chronic Pain Coping Inventory, and it seems to – at least in this Dutch version of the CPCI. Pacing is different from guarding, asking for help, avoiding and so on.

The second question was whether pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI. The reason for testing this hypothesis was to ascertain whether ‘activity pacing is an adaptive behavioural strategy that could be taught in pain management programs to improve adjustment in FM.’

Zero-order correlations revealed that patients using more pacing strategies reported greater physical impairment and more disability as opposed to less physical disability, so perhaps not such a great strategy to use – but wait: regression analysis demonstrated that pacing did not significantly contribute to physical functioning and disability over and above demographic variables, pain severity, pain catastrophizing and other behavioural strategies reported in chronic pain.

This means that the present study suggests that helping patients to increase pacing strategies in pain management programs may not be a key element in diminishing disability in FM. The authors suggest that the context in which pacing is used may determine whether it’s adaptive or not. Some patients may use pacing as an avoidance strategy, while others may use it, along with graded activity, to increase their ability over time.

The two strongest predictors of disability in this study were guarding and asking for assistance, which are likely to be dysfunctional strategies in FM. This shouldn’t be surprising, as these findings fit with the fear-avoidance model of disability.

Now, some caveats when interpreting this study. Don’t ever confuse correlation with causation – this is a correlational study, so there could very well be some intermediate factor that moderates the effect of activity pacing and disability. The authors quite rightly identify this. Longitudinal and experimental designs are needed to explore the relationship between activity pacing and disability in much more detail. Observational studies are needed to counter the self-report nature of the study instruments in this study. (Of course, we know how difficult observational studies are to carry out!).

Nevertheless, the authors suggest (and I agree based on my experience) pain management programs targeting activity pacing or behavioural strategies in general may not be effective in FM. Instead, therapeutic interventions based on fear-avoidance models specifically targeting paradoxical safety behaviours are likely to be useful in FM. I’m not sure we do exposure therapy as well as we might – and I’m certainly not sure we identify safety behaviours well at all. Perhaps something to explore in the future?

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Karsdorp, P., & Vlaeyen, J. (2009). Active avoidance but not activity pacing is associated with disability in fibromyalgia Pain DOI: 10.1016/j.pain.2009.07.019

J.R. Gill and C.A.A. Brown, Structured review of the evidence for pacing as a chronic pain intervention, Eur J Pain 13 (2009), pp. 214–216.

L.M. McCracken and V.M. Samuel, The role of avoidance, pacing, and other activity patterns in chronic pain, Pain 130 (2007), pp. 119–125.

W.R. Nielson and M.P. Jensen, Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome, Pain 109 (2004), pp. 233–241.

Pain-related anxiety and avoidance: a practical application of theory and research to clinical practice

In 1995 I started work at the Burwood Pain Management Centre.  It wasn’t my first foray into pain management, but it was the first time I had worked in a fully integrated interdiscipinary team environment.  It was also significant because of the use of the words ‘fear-avoidance’, ‘guarding’ and ‘anticipatory anxiety’.

What the team had observed was that there were a specific group of patients who were not just worried about experiencing pain, but were also showing the signs of increased physiological arousal, avoidance of specific activities, and firm beliefs about harm, reinjury, or doing further damage.

At the time we used an operant conditioning model (based on Fordyce, 1971 & 1976), along with graded reactivation using a physical conditioning model, to help these people learn to be more functional.  We had some successes – but a number of less successful responses too.

Towards the end of the 1990’s, a new model started to emerge.  It was the ‘fear-avoidance’ model proposed firstly by Lethem et al (Lethem et al. 1983), then elaborated on by Vlaeyen and colleagues (1999, 2000).

This model proposed that people demonstrating avoidance of activities may be developing a ‘phobic’ response to their situation: based on catastrophic interpretations of their pain, beliefs that their body will be dangerously harmed by movements, increased physiological arousal in response to these beliefs, avoidance of situations the same as or similar to those that provoke their beliefs, and subsequent reward of this avoidance by negative reinforcement (ie, by avoiding a negative experience, they increase the avoidance behaviour).

Case formulation – the next few steps

Over the past few days I’ve been writing about case formulation because in pain management, it’s rare to find only one single causal factor that is influencing either the pain or the disability. Most times we are looking at many factors coming from all three areas of the biopsychosocial model.

In each person, the relationships between and combinations of these factors will be unique. And that’s the value of a case formulation as opposed to a diagnosis, which is more like ‘shorthand’ for a group of symptoms that go together and are supposedly linked by a causal mechanism (in the case of non-mental health problems).

After identifying stable phenomena (symptoms that are present over time and in different places), the next step is to identify the underlying biopsychosocial causal factors that produce the phenomena we see, and the relationships between these factors as they interact.

Success! Why measuring outcome is so rewarding

Not a research post today, but a great experience that I hope will encourage anyone who is not already a fan of regular outcome measurement to get on with it!

I saw a person yesterday who has had pain for about 3 years.  Superficially she’d been managing quite well – still working, having a social life, managing all her household activities and in general, looking good.  BUT – and you knew there would be a ‘but’ – once I started to look a little deeper, it was absolutely amazing to see how much she had adapted her life to avoid specific movements.

I used the PHODA (photographs of daily activities) to assess the specific movements and activities she didn’t like to do.  I’ve blogged about PHODA (Kugler et al, 1999) before – a set of photographs of everyday activities in a variety of settings that can be used to identify and score fearfulness and avoidance.  The findings showed that although this woman was able to do things, the way she did them was to avoid ANY bending, twisting, reaching, jarring or lifting.  She was the original Gadget Queen with things to help her do everything WITHOUT bending.  An occupational therapists dream!

Working with a kinesiophobic person

One of the biggest challenges when working with someone who is fearful of pain and avoids movement is that although it’s very much like any sort of phobia, it differs on one essential point: people who are spider phobic, socially phobic, fearful of flying or heights or whatever are usually aware at some level that their fear is out of proportion to the ‘real’ risk. People who are kinesiophobic (kinesio – movement, phobic – fearful) are much more likely to believe that their fear is realistic and to have their concerns about moving despite pain reinforced both inadvertently and deliberately by others (including health professionals!).

So, to introduce the idea of beginning to move despite fear of pain or harm requires a bit of a delicate touch!

Some people advocate ‘just tell them’, and spend a good deal of time going through a psychoeducational approach about the difference between hurt and harm until they believe they have convinced the person that it’s OK to move. And sometimes this does reduce the ‘threat value’ of pain.
But just as the spider phobic person (and I was one!) is not reassured by the knowledge that in New Zealand we have very few poisonous spiders, and the one or two we do have are quite rare, the person who is afraid of moving when they are sore can remain unconvinced and continue to avoid moving despite the best ‘information’ or education available.

So, what can you do?
Well, let me tell you how I’ve started working with my current client. The man I’m working with is in his late 20’s, he has a slight disc bulge in his lumbar spine, with little evidence of nerve compression, and he has a 12 month history of low back pain.

His back pain started after he lifted some timber at work, and tripped, falling onto his side with the wood on top of him. He has had a very thorough orthopaedic examination, been seen by a neurosurgeon who doesn’t want to pursue surgery because of the somewhat equivocal findings both neurologically and on imaging studies. He’s now being seen by me and a physiotherapist, and having his low mood treated with pharmacology. He uses paracetamol for pain relief but no other medications.

Functionally, he still has good power in his lower limbs, has no neurological findings, but his activity level and movement patterns are extremely limited. He sits for about 3 – 5 minutes before getting up and slowly stretching. He walks (albeit slowly) to keep comfortable, and can stand for only a few minutes before leaning or stretching.

He has completed a set of questionnaires, including the short version of the Tampa Kinesiophobia Scale, and his score on this questionnaire was well above the cut-off we use to identify those a risk of kinesiophobia.

When I completed the 99 picture PHODA with him, he indicated he would not attempt nearly 70 of the pictures, including any pictures of bending forward, twisting his trunk, jarring (eg going up and down stairs, or riding a bike over a kerb or using a mini-trampoline), carrying anything, or reaching above his head. In his daily activities, he is not working, he makes his bed (he has a duvet only), carries out his personal activities of daily living, but is otherwise either inactive (lying down to rest), or he walks.

He is living with family who are doing all of the household activities, so his responsibilities are very low. In addition, he is quite depressed although starting to look more future-oriented, he has an unsupportive family who are quite critical of his limitations despite carrying out his household responsibilities, and he has broken up from a long-term relationship about six months ago.

I started with using a motivational interviewing approach, and suggested we review some of the areas that other people often find helpful when they are thinking about managing pain. Using a menu of options, he identified sleep, medication use, relationships and work as his main concerns.

I asked him what he had found useful about previous therapies, and also what he had found not so helpful about those approaches. My aim was to help him identify that his previous attempts to control his pain by avoiding activities had not reduced his pain, and had increased the difficulties he faced living his life according to the values he holds.

I asked him whether he thought his movement patterns were helping him or whether there were some not so good features about the way he moved. He agreed that although sometimes it meant that he could avoid doing a movement that he thought increased his pain, for much of the time his pain remained and he had to keep on being ‘careful’ of any movements he did, and this was exhausting!

I then asked him how important it was to him to be able to return to normal activities even if it meant he needed to bring his pain along as well – and he indicated that it was very important. Using the ‘scaling questions’ (Why do you think it’s so important to you? Why give it a 9/10 and not a 6/10?), he told me that he thought his life was becoming very restricted, he wasn’t able to work, and he didn’t think there was going to be a medical way to reduce his pain.

I then went through his confidence that he would be able to carry out normal activities despite his pain, and he told me it was 3/10. Once again, using ‘scaling questions’, I asked him what it would take to help him move his confidence up a little, had he ever successfully made a change in his life despite it being quite hard, and he was able to talk about how he had worked his way up in the workplace despite not being a proficient reader, and that he knew he could make changes because if he took things one step at a time, he could see progress.

I then went through the PHODA pictures, and asked him which of the images he thought were most important for him to be able to do. He indicated that bending forward (eg to do dishes and clean teeth) was important, and also to put on shoes and pick things up from the floor.

I suggested to him that we weren’t sure why he thought he shouldn’t do these things, and asked him what went through his mind when he thought of himself doing these activities. He told me immediately that as he looked at photographs of people bending he could see himself falling forward and hitting the ground, or he could see his vertebrae grinding ‘bone on bone’ and see himself clutching his back because of the pain saying ‘I couldn’t cope with that sort of pain’.

Three things to note here:

1. the catastrophic image which generates an emotional response,
2. the misbelief that his vertebrae had no ‘padding’ so they were ‘grinding’ when he moved, and
3. the belief that he ‘couldn’t cope’ with high levels of pain

Each of these automatic thoughts/images are open to reappraisal, but unless they’re paired with actual movement, they are not likely to help him actually do things.

So – tomorrow I’ll discuss the next step in his programme: working towards ‘exposure’

A randomized controlled trial of exposure in vivo for patients with spinal pain reporting fear of work-related activities

DOI:10.1016/j.ejpain.2007.11.001

The complex question of whether to integrate experimental therapeutic interventions into daily clinical practice is one that has caught many therapists out. A case in point is the use of laterality and visualised movements for CRPS where, in one clinic, it was found that of the 10 participants recruited, only 4 had actually adhered to the treatment protocol, none of these demonstrated changes to their function or reported pain.

A treatment with more experimental support than laterality training for CRPS is graded exposure for pain-related anxiety and fear in people with low back pain.

This study by Linton, et al. (2008), is an excellent example of how careful description of process and equally careful monitoring and measurement can provide insights into how to transfer promising experimental findings into clinical practice. As the authors state: “Pain-related fear is a key factor in the perpetuation of back pain disability for a subgroup of patients with work-related pain problems (Asmundson et al., 2004; Leeuw et al., in press; Vlaeyen and Linton, 2000).” Previous studies by Vlaeyen and others have demonstrated the effectiveness of an exposure-based approach to reduce the fear and disability experienced by people scoring above >35 on the TSK (Boersma et al., 2004; de Jong et al., 2005a,b; Linton et al., 2002; Vlaeyen et al., 2001). The process involves assessing specific activities that the individual identifies as causing concern using the PHODA Photograph Series of Daily Activities (PHODA) (Kugler et al., 1999), developing a graded hierarchy of activities, then working through this hierarchy until the individual no longer experiences concern at these activities.

This study extends the research by employing a randomised controlled trial, with waitlist control group, and treatment as usual carried out at the same time as the graded exposure. Treatment as usual consisted of medication, contact with the GP and physiotherapy (the content of physiotherapy was not specified). Quite stringent criteria were used for inclusion, leading to a small treatment group (46 out of 223 potential participants), and a high drop-out rate also influenced results although this was controlled for using intention to treat methodology. The drop-out rate is similar to that found in other exposure-based treatments for other disorders (eg OCD), and probably reflects the difficulty of the task – facing very real fears is never easy!

Something that this study included that other exposure-based studies have not, is attention to work-specific concerns. The basis for this is that many people with ongoing disability report their fear of being able to sustain activities at work, while they may continue to participate in home-based activities. The study does not specify the type of work these participants were engaged in, which is a short-coming, and the authors say ‘Because this study was not specifically designed to assess fear of work movements, future studies will be needed to ascertain whether fear may be specific to work movements as well as whether the addition of exposure for work movements/situations is of real value.’ The PHODA does not identify work-specific activities, but instead uses a range of daily home and community-based activities, and I can envisage some challenges in developing a research appropriate work task assessment tool similar to the PHODA simply because of the wide range of work activities. Phobia’s are incredibly personal, unique and specific fears, and stimuli for eliciting fear need to be just as unique, which will be a challenge for research. In my practice, photographs or video of the actual workplace has been used, which provides some degree of authenticity to the initial stimulus.

The results? Overall, it was found that exposure therapy did have an effect, but given both the limitations of a waitlist design, and the relatively high threshold for inclusion, it may be difficult to justify exposure therapy as a standalone treatment. It seems to have effect when included with treatments addressing family, employer, cognitive beliefs and other work rehabilitation barriers, alongside functional activity.

Perhaps, when occupational therapists and psychologists start to talk to each other, and trust each others clinical skills, both they and physiotherapists may be able to develop treatment protocols to help transfer exposure therapy into settings such as work – although I value the work of therapy in clinic, it seems that with treatment of phobia, it’s not enough to do this only in a clinic setting and the ‘real life’ setting of work, home and the community needs to be used as an integral part of therapy.

Asmundson GJ, Vlaeyen JWS, Crombez G. Understanding and treating fear of pain. Oxford, England: Oxford University Press; 2004.

Boersma K, Linton SJ, Overmeer T, Janson M, Vlaeyen JWS, de Jong. Lowering fear-avoidance and enhancing function through exposure in vivo: a multiple baseline study across six patients with back pain. Pain 2004;108:8–16.

de Jong JR, Vlaeyen JW, Onghena P, Cuypers C, den Hollander M, uijgrok J. Reduction of pain-related fear in complex regional pain syndrome type I: the application of graded exposure in vivo. Pain 2005a;116:264–75.

de Jong JR, Vlaeyen JW, Onghena P, Goossens ME, Geilen M, Tulder H. Fear of movement/(re)injury in chronic low back pain:education or exposure in vivo as mediator to fear reduction? Clin J Pain 2005b;21:9–17.

Kugler K, Wijn J, Geilen M, de Jong J, Vlaeyen JWS. The photograph series of daily activities (PHODA). The Netherlands: Heerlen; 1999.

Vlaeyen JWS, de Jong J, Geilen M, Heuts PHTG, van Breukelen G.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. Behav Res Ther 2001;39:151–66.

Vlaeyen JWS, Linton SJ. Fear-avoidance and its consequences in chronic musculoskeletal pain: a state of the art. Pain
2000;85:317–32.

LINTON, S. (2007). A randomized controlled trial of exposure in vivo for patients with spinal pain reporting fear of work-related activities. European Journal of Pain DOI: 10.1016/j.ejpain.2007.11.001

Are you afraid to push your patients?

We have all heard about fear avoidance, or pain-related anxiety and avoidance in patients (Vlaeyen & Linton, 2000). This model of pain disability has become increasingly prominent over the past 10 years and research has demonstrated its effectiveness in predicting those who will develop long-standing disability, as well as providing amodel for treatment approaches – the graded exposure approach being one (Vlaeyen, 2002; Leeuw, Goossens, van Breukelen, deJong, Heuts, Smeets, Koke, Vlaeyen, 2008)).

Shortly after the model was introduced, researchers posed the question – are we as clinicians fear avoidant? Do we avoid asking our patients to ‘push’ themselves – either into increasing pain, or possible harm? (Linton, Vlaeyen, Ostelo (2002) is a good example).

In this recent editorial, Ostelo and Vlaeyen (2008) ask the question: have things changed? Do we still limit our expectations of people who experience pain because of our own beliefs and attitudes? Do we project our own concerns onto our patients, and in so doing, increase their risk of ongoing disability?

Bishop, Foster, Thomas & Hay (2008) suggest in their study that indeed, our treatment behaviour is correlated with our personal beliefs and attitudes, and that this affects our expectations and recommendations for our patients. Although there are several criticisms of that study (low response rate, yet another questionnaire with relatively little cross-validation of the content, and the use of vignettes rather than observing actual clinical practice), it nevertheless raises questions that haven’t previously been asked about the influences on patients, rather than focusing only on patient beliefs and attitudes.

It’s not an easy area to study, but intriguing, and opens the fear avoidance model up to include more environmental factors than are currently included. So, a question for all of us: how do we feel about asking patients to persist with activities despite pain? What do we do – both intentionally in terms of recommendations, and unintentionally in terms of our verbal and nonverbal behaviour?

Ostelo R.W.J.G & Vlaeyen J.W.S.(2008) Attitudes and beliefs of health care providers: Extending the fear-avoidance model Pain (135:1-2), pp 2-3.