‘Pacing’ or Quota

Interrupted by Pain


If there’s one thing I loathe, it’s being interrupted when I’m in the middle of something. There I am, working away at something, in the flow, knowing where I’m going and what I’m doing then BANG! something gets in the way!

I wasn’t aware, but there is a science of interruptions – mainly studied within ergonomics or human factors research (the study of work and humans) – and this science has begun to unravel some of the issues associated with interruptions. Interruptions are not only annoying, they’re also a good way to provoke mistakes!

Pain is, as Geert Crombez and others have shown, a stimulus we find difficult to ignore. It interrupts what we have planned, and orients us towards finding ways to escape the stimulus. Of course, when pain doesn’t stop, as in chronic pain, people learn to deal with the interruptive effect of pain so they can get on and do things that are important – but at the same time, because part of our brains must deal with the pain in some way, our performance can be degraded.  Essentially, to continue doing something important when pain is also present requires us to deal with goal conflict. 

What happens when a person becomes aware of his or her pain while working on another goal?

Well, initially, the goal pursuit remains strong – our brains are very good at prioritising what we want to do, except when the new stimulus is salient (relevant), novel (new) and intense. Pain is (usually) relevant (it’s a threat!), is experienced as something new or different about our bodily status, and varies in intensity. So in the context of a task, people may remain focused on the task until the pain is intense enough, or meaningful enough, or new for it to capture the attention.

So, pain gets in the way, and we attend to the threat and the threat reduces.

After some time, we return to what we were doing – but the time that it takes to get back to what we were doing differs depending on a bunch of things.

Those things include

  • the threat value of the pain,
  • how readily it resolved,
  • how close to the end of the original activity we were,
  • how quickly we oriented towards the pain (the more quickly we do, the less easily we return to doing what we were originally doing, perhaps because we don’t have time to code the need to return to it into our memory before we move on to address the pain),
  • whether there are cues in the environment that help us remember to get back to the original activity

and a bunch of other things as well.

Some interesting facts have emerged about interruptions – if we have many interruptions, it’s easier to adapt to them and get back to the original task (which is possibly why mothers are known to be good at multi-tasking!); unpredictible interruptions are more difficult to recover from, they’re more disruptive; interruptions that last a long time make it more difficult to return to the original task.

In the case of chronic pain, pain is usually present to at least a certain degree all the time. It’s when it is intense, or the character changes, or it is particularly salient, or perhaps our overall coping is less, that pain interrupts more. So, for some people, it’s possible to delay being taken off task to attend to pain because these people might have learned that it’s “nothing unusual”, it isn’t a threat, it will subside of its own accord, or it’s just less important than the goal they’re working on.

For those of us who do deal with chronic pain, the aspect that may still trip us up is getting back to the activity we were working on before we needed to take a break because of our pain. If we need to take a long break, if we stop the original activity without having clearly planned to stop, if we don’t give ourselves cues to return to the activity, we might find it more difficult to remember (a) where we were in the activity, and (b) that we actually were working on something!

The relevance of interruptions becomes very important when, as therapists, we suggest to people that they consider using activity pacing.

While the definitions of pacing are not clear and still being debates, essentially it means interrupting what a person is doing to take a break, regain energy or maintain pain at a reasonable level. I’m sure many of you will remember the old-fashioned programmes on the computer that used to flash up a screen telling you to STOP! and do a break or stretch. You could “ignore” it a few times, but eventually it would lock your computer so you couldn’t use it until you’d taken the predetermined break. I LOATHED it! I’d be halfway through writing something and it would stop me and get in the way. So I deleted the programme.

That’s one of the problems of these kinds of approaches to activity management – they may stop you “overdoing” something, but they often stop you from completing a task, and completely disrupt your thinking!

My preferred way of helping people to use “pacing” was to suggest “activity chunking” where, at the completion of some chunk of an activity, the person could take a quick break to do a body scan or stretch or something. I found that people used this strategy more often, complained less often, and consequently relaxed a lot more!

After reading about pain and interruptions, I can now understand why this strategy was a little more effective – because at the end of a chunk of activity there are cues established in the memory to remind us that we’ve got a task to complete. These breaks were planned and expected, so they were easier to anticipate, and therefore accommodate.  Eventually, as people got good at them, they become habitual and no longer seem to get in the way of doing the original task.

Pacing, interruptions and pain. People with chronic pain are chronic multi-taskers. We know multi-tasking isn’t good for cognitive efficiency, accuracy or even energy (see the references below), so quite apart from the added burdens we as clinicians might give to people with chronic pain by suggesting “pacing”, people who have chronic pain are chronically stretched cognitively.

My suggestion for managing the demands of pacing and pain is to use planned breaks, preferably using chunks – or, as I’ve been doing recently, using Pomodoro technique to plan and schedule my activities and breaks. I also use mindfulness when my pain begins to get noticeable. By doing this I can remain “on task” rather than distracted.

Conard, M.A., & Marsh, R.F. (2014). Interest level improves learning but does not moderate the effects of interruptions: An experiment using simultaneous multitasking. Learning and Individual Differences, 30, 112-117.
Finley, J.R., Benjamin, A.S., & McCarley, J.S. (2014). Metacognition of multitasking: How well do we predict the costs of divided attention? Journal of Experimental Psychology: Applied, 20(2), 158-165.
Gatzounis, R., Schrooten, M. G. S., Crombez, G., & Vlaeyen, J. W. S. (2014). Interrupted by pain: An anatomy of pain-contingent activity interruptions. PAIN®, 155(7), 1192-1195. doi: http://dx.doi.org/10.1016/j.pain.2014.03.017

Katidioti, I., & Taatgen, N.A. (2014). Choice in multitasking: How delays in the primary task turn a rational into an irrational multitasker. Human Factors, 56(4), 728-736.
Munneke, J., Fait, E., & Mazza, V. (2013). Attentional processing of multiple targets and distractors. Psychophysiology, 50(11), 1104-1108.
Sanjram, P.K. (2013). Attention and intended action in multitasking: An understanding of cognitive workload. Displays, 34(4), 283-291.

 

Working inside the envelope – or pushing the boundaries


ResearchBlogging.org
There is something very satisfying about reading a well-designed and beautifully written research paper. Not only can it produce some helpful answers (and usually pose multiple questions!), but the process that is followed means it’s pretty easy to see how the researchers arrive at their conclusions. This paper by White, Goldsmith, Johnson, Potts, Wolwyn, DeCesare, et al., is just one of those papers.

Why am I writing about research into four treatments for chronic fatigue syndrome?  Well, the treatment options used in this trial are exactly the same treatments used in chronic pain management (cognitive behavioural therapy, graded exercise therapy, adaptive pacing therapy and specialist medical care). And it poses the question: does ‘working inside the envelope’ of energy help people achieve better mood status and better functional status than challenging the assumption that ‘this is as good as it gets’?

On with the method.  This study examines four different treatments carried out in parallel, it’s an unblinded/masked randomised trial designed to establish the effectiveness of these treatments as well as the adverse events associated with each treatment, and reviews the outcomes up to one year after treatment ended.

Participants were carefully selected to meet the criteria for a diagnosis of chronic fatigue syndrome, and it’s interesting to see that only 28% of the people initially recruited actually met these criteria, and of this group, only 71% or 641 people actually progressed through to treatment.  Thankfully the CONSORT trial profile included in the paper shows very clearly who was ‘in’ and who was ‘out’ – and why!

Clinicians were carefully trained, supervised regularly, and treatments were monitored for adherence to the treatment type, the manual used, and that sufficient number of sessions were carried out.

A number of outcome measures were used – primary outcome measures of fatigue and the SF-36 physical subscale, with secondary outcome measures covering a range of variables including the ‘I think you look better’ clinical global impression scale, the six minute walk test, and the number of chronic fatigue symptoms remaining, along with a couple of others.

So what exactly were they testing in this study?

Adaptive pacing therapy is based on the idea that people with chronic fatigue have a limited amount of energy available, and that this is fairly static with limited potential for improvement.  People are asked to monitor their fatigue, and plan their days according to their energy levels, avoid ‘overdoing’ things, prioritise and therefore achieve what is important, and set the scene for natural recovery, if that occurs.  The strategies include looking at daily activities to identify links between activity and fatigue, becoming aware of ‘early warning signs’ of fatigue, regularly using rest and relaxation and generally attempting to ensure that no single activity exceeded ‘70% of the energy envelope’.  Participants could participate in more activities provided they felt they could and as long as their symptoms didn’t get worse.

Cognitive behavioural therapy is based on the idea that chronic fatigue is reversible, and that fear of activity (cognitions) and avoidance of activity (behaviours) influence physiology and perpetuate the problem.  By changing the appraisals of symptoms and introducing approach behaviour rather than avoidance within ‘behavioural experiments’, participants can test the usefulness of their beliefs and gradually, in a planned way, increase their activity level.  This is delivered within the context of identifying important activities and problem solving through obstacles that could get in the way of engaging in these activities.

Graded exercise therapy is based on the idea that people with chronic fatigue are, at least in part, deconditioned and intolerant of activity.  By gently extending the level of activity, participants can reverse the physiological changes that perpetuate chronic fatigue, and gradually return to participate in everyday activities.  Participants develop a baseline level of activity, then in planned increments of time rather than symptoms, start to increase the amount of time they spent in exercise.  Target heart rates and time exercising were set collaboratively, and most participants started with walking.

Specialist medical care consisted of education about chronic fatigue, prescription of symptom-alleviating medications (mainly for sleep, pain and mood), and general ‘self help’ advice.

What happened?

Well, surprisingly, both the specialist medical care and the adaptive pacing therapy achieved similar results across the outcome domains.  And both CBT and graded exercise therapy achieved similar results over the domains, with CBT improving mood slightly more than GET, and GET improving physical activity slightly more than CBT.  What was incredibly surprising is that both of these therapies were more effective than pacing and specialist medical advice.  And even more surprising was that the rate of adverse events was pretty similar – with CBT having the least number of events than those in adaptive pacing or graded exercise therapy.  None of these adverse events was considered, according to predetermined criteria, to be a ‘serious’ event, and adverse events generally were quite common.

How does this study finding apply to chronic pain management?

I think the underlying hypotheses of the treatments used in this study are pretty much the same as those used in chronic pain management.  The question is – do we help people ‘live within their limits’, or do we help people extend beyond those current restrictions and progress towards doing things they think they can’t?  It’s a question that some clinicians don’t even consider because the focus in chronic pain management has so often been on curing or fixing the pain.  And then there are clinicians like myself who want to help people live well despite still experiencing pain.

But in a large number of support groups, the whole idea of learning to do more seems invalidating.  To want to change from being seriously disabled to living pretty much normal lives means giving up some of the ‘being disabled’ identity.  It can mean no longer being given special consideration, or having the limitations of choosing what to do and when to do it acknowledged by others.

I’m not sure that I give enough time and attention to helping people mourn these losses as we try to push the boundaries.  At the same time as making space for mourning though, I want to give hope that life can be good, and better, than what is current.  Time to push the boundaries – but gently does it.

White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O’Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M, & PACE trial management group (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet, 377 (9768), 823-36 PMID: 21334061

Establishing routines and baselines: Recording daily schedules


ResearchBlogging.org
I don’t know about you, but I’m not the world’s best at noting down every activity I do during a day.  I get engrossed in the thing I’m doing and I often get interrupted, so it’s not very easy to record my activity moment-by-moment.  Yet, for many of us, this is something we ask for from the people we’re working with.

Luckily, there is some research on daily diary methods.  Unluckily for most of us, the best ones (ie most accurate and least intrusive) are electronic!  Useful if you’re funded for some research, less helpful if you’re trying to do this in your everyday clinical setting!  Basically, the research findings show that an electronic, automated and usually random alarm that reminds the participant to record their activity (and usually pain) then-and-there provides more complete data than a paper diary.

I’m definitely no computer programming expert (actually I don’t know anything about programming – I just use the darned things), so I don’t have access to either the technology or the programming to be able to use an electronic diary.  One day perhaps.  So I rely on paper recording.

Various diary formats are available, and it depends on what you’re wanting from the diary recordings as to the best format to use.  The main things to remember are:

  • Not everyone follows the instructions! If the effort of completing any daily recording is too high, you’ll see the person quickly scribbling in the diary in the waiting room – not quite what you hope for!
  • Keep the demands reasonable.  If you would find filling a diary of everything that you do difficult, it’s likely the person you’re working with will too.  In practical terms this means making the purpose of the diary very clear (so importance is high), and the recording process as simple as possible (so confidence that it can be done is high).
  • Cuing the recording to regular activities helps.  So it’s a good idea to anchor filling out the diary to mealtimes, for example.  Of course if the person doesn’t have regular mealtimes, this isn’t going to be easy – but just by tying the recording to specific times of the day may be sufficient.
  • Tickboxes are easier than writing words.  If you can, make the recording process as simple as possible – it’s easier to tick a box for a category of activity, for example, than to write down “Grocery shopping”.
  • Recording something draws attention to it. And is this what you’re wanting? If you ask a person to record pain intensity, and you’re really aiming to increase activity, you’re focusing the person’s attention onto pain rather than onto whether they’ve completed the activity.  I personally rarely record pain intensity, and I don’t talk much about pain intensity after the first session.  I don’t aim to alter pain intensity, so I don’t focus on it.  If I want to focus on distress or thoughts or ‘up time’ – these are what I’ll ask the person to record.

With someone who finds it difficult to record anything, the initial focus could be on simply recording how often a target behaviour occurs.  For example, I’m working with a woman who has very low confidence for managing painful flare-ups, so she does very little on high pain days.  She’s also quite low in mood and becomes highly distressed.

I’ve worked with her to identify two activities that she can do everyday – putting on makeup, having coffee with her children.  We’re only recording (with a tick!) the number of times in a week that she completes these two activities.  By focusing on an activity she wants to do, and only recording when she is successful, her attention is on what she is doing (rather than the entire list of things she’s not doing), and she gradually seeing only the successes, rather than recording her failures.  We add the total number of days in a week that she’s been successful, and increasing that running total is our goal.  I’ve limited the number of activities she’s recording – too many, and she’ll be overwhelmed and feel demoralised.  Once she’s managed these two activities consistently every day, we’ll add another activity to the list.

Another approach is to use the ‘Plan to, Did do’ diary.  In this approach, popularised by Sullivan in the Progressive Goal Attainment Programme (PGAP), the participants make a plan for the day either the night before, or in the morning.  At the end of the day, they note down their actual activity pattern beside their planned ones.  At the bottom of the sheet, some of the strategies the person used to do their activities can be listed – both the planned ones, and the ones they actually used.

And my final adaptation is to use a colour coding arrangement on a spreadsheet with one client.  To help her identify the balance of activities she carried out during each and week, she completed her daily activities in a spreadsheet, and used colours for ‘self care’, ‘family’, ‘paid work’, ‘exercise’, ‘relaxation’, ‘household management’.  By doing this she was quickly able to review her week to see how closely she’d followed her planned allocation of activities over the week.  This allowed her some flexibility within each day, with the focus on her weekly balance rather than her daily schedule.

I’ve listed some interesting papers on the use of electronic recording

Allen, K. D., Coffman, C. J., Golightly, Y. M., Stechuchak, K. M., Voils, C. I., & Keefe, F. J. Comparison of pain measures among patients with osteoarthritis. The Journal of Pain, 11(6), 522-527.

Kristiansen K, Lyngholm-Kjaerby P, & Moe C (2010). Introduction and Validation of DoloTest(®): a new health-related quality of life tool used in pain patients. Pain practice : the official journal of World Institute of Pain, 10 (5), 396-403 PMID: 20384966

Palermo, T. (2004). A randomized trial of electronic versus paper pain diaries in children: impact on compliance, accuracy, and acceptability Pain, 107 (3), 213-219 DOI: 10.1016/j.pain.2003.10.005

Schiavenato M, & Craig KD (2010). Pain assessment as a social transaction: beyond the “gold standard”. The Clinical journal of pain, 26 (8), 667-76 PMID: 20664341

Establishing routines and baselines: Baseline recording


One of the problems novice clinicians often complain about is that journals and research papers rarely examine or provide practical approaches to daily problems that are encountered when working with people who have chronic pain.

It can take a lot of work to locate suitable approaches to things like:

  • ways to help a person who is not accepting that a cure for chronic pain is unavailable
  • ‘motivating’ a person to engage in activities that are anticipated to increase pain
  • how to develop a baseline and establish an appropriate rate of progression
  • how to establish a daily routine

It’s tempting to think that in the absence of evidence-based approaches, the clinical skills are artistic rather than scientific, but I’m not so sure about that.  Maybe it’s more a case of lack of systematic documentation about methods used, or lack of systematic examination of the ways in which these often non-sexy and very practical strategies might be improved (subtle hint to clinical researchers here!).

Anyway, there are a few approaches that I’ve collected for developing a daily routine and baseline.  To date I don’t have publications to cite in their defense, so you’ll need to join me in exploring how and whether these work to help people with chronic pain become aware of their activity patterns.  First up: Baselines

There is good evidence that simply by recording what happens on a daily basis, positive changes can begin to occur.   This is a basic behavioural approach that has been used in eating disorders, smoking cessation, exercise, diabetes blood sugar monitoring and treatments for OCD.  It’s the principle that by having feedback available about often habitual activities, we’re more aware of them, and can begin to recognise antecedents and consequences of the behaviours in question.

The process of recording what happens, when it happens, and what comes after is often called ‘establishing a baseline’.  Clinicians unfamiliar with psychological use of baselines use the term without realising that, for behaviour change, the natural variations in behaviour need to settle into some sort of pattern in order for it to be called a ‘baseline’.

Variations in activity levels, for example, may not occur over the course of a single day or even over the course of a week.   If we don’t spend the time exploring variations over time until they’ve settled into a recognisable pattern, it can seem as if there are no patterns and fluctuations occur in a totally random way.

Once a baseline is recorded, we can start to analyse the antecedent triggers or events might be (ie the things that come before a behaviour), and the consequences of each type of behaviour.  This can help us identify the type of situation the person has trouble managing effectively (or in a way that is aligned with the person’s values in the long term).

For example, we might notice that it’s often after a period of feeling relatively comfortable that the person suddenly starts increasing his/her exercise demands.  After a few days of increased exercise, he/she might suddenly stop.  It’s important to explore the reasons the person felt it was important to increase exercising – automatic thoughts about being ‘lazy’ for feeling OK but not making the most of it? or automatic thoughts that the pain has ‘gone’ and ‘I’m cured’ so it’s time to start doing things normally again? or did the person get ‘bored’ of doing the same old thing and seek something more stimulating and blow their energy budget?

There are loads of ways to record baseline activity – diaries similar to an appointment diary; recording sheets that have several things to track such as sitting time, distance walked, thoughts about situations – and for people with high-tech backgrounds, electronic diaries that ask the person to note their activity as they go just by clicking on a button on a phone or PDA or iPad.

There is some research on whether there are differences in the quality of information collected via pen and paper through the day, or whether an ‘end of day’ record is sufficient.  I think it depends on the purpose of your assessment, and it also depends on the ‘pen-and-paper-ness’ of the person you’re working with!  In other words, it’s going to be difficult for a heavy labourer with limited access to pen and paper and low literacy to complete a detailed activity diary throughout the day, but if you’re asking a busy executive who is used to carrying a PDA or iPad around with them to do the same activity electronically, it’ll probably happen.

One simple electronic method of recording ‘up-time’ is a simple pedometer.  Taped up so it can’t be opened, it can be worn for three or four days, then opened, the total number of steps recorded, divided by the number of days, and there is a rough measure of general activity level.  This can help when developing and monitoring activity level over a longer period, such as when you’re helping someone begin a walking programme, or to maintain an even level of activity each day.  Just by recording the number of steps over a fortnight or so, with a target of maintaining the same number of steps each day, the person has a target to aim for and it can act as feedback on their overall activity level and help shape their activity behaviour.

More on ways to establish routines next time!  If you find this interesting and want to know more, or have questions, don’t forget you can post a comment below, and I’ll do my best to help.  I’m also collecting some diary and other recording formats that I’ll post in my next post.

Pacing and avoidance in fibromyalgia


ResearchBlogging.org

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?

If you’ve enjoyed this post, and want to read more you can subscribe using the RSS feed link above. You can also bookmark and just visit! I write most days, love comments and usually respond pretty quickly. If you do make a comment, remember your comment will be public, so be aware of this. If you’d rather contact me directly, go to my ‘About’ page and send an email from there.

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.

Real world outcomes still matter: why medical and psychological is not enough in pain management


NB: The following rant does not reflect the opinions of my employers, colleagues, family or pets! It is MY opinion!

I feel rather weary today, having come to a realisation that although pain management as a field of work has become much more recognised, there are some serious differences of opinion around approach and priorities between various members of the health care team.  I could list my current gripes and take up more than one screen on this blog, but I’ll try and confine myself to whining about just one: the lack of recognition of  ‘real world’ functional outcomes.

What I mean is this – we can have the widest range of self report questionnaires covering all the variables in the world from pain intensity, pain quality, pain location to self efficacy, depression, distress, thoughts and beliefs – but if we don’t see some sort of change in what a person does from day to day, then what is the point of our treatment?

I readily recognise how hard it is to measure real world functional change. It’s much easier to use a questionnaire to tap into a single variable like ‘how much pain do you feel?’ I also know that there are many reasons why someone might say they feel ‘better’ but make no changes in what they do – after all, multiple intervening variables influence even a simple thing like whether someone is sleeping better let alone whether someone needs less home help – but at the same time I can’t help thinking that a change of a couple of points on a self-report measure of kinesiophobia actually makes a lot of difference to a person’s life in the greater scheme of things.

Why is it important? Well, in the move to demedicalise much of pain management (although some of us would debate whether this has, in fact, occurred!), psychology has moved into ascension.  I love psychologists, know quite a few very well, and I even have a degree in psychology – but at the same time, psychological factors are only part of a person’s presentation when they’re having trouble with their pain.  Psychologists have contributed much to our understanding of pain and pain management – notably in the measurement of factors that are important in the experience of pain, and in expanding our understanding of psychosocial factors.

You may run the word ‘psychosocial’ together, as I am known to do, but the model we use for much of pain management is a cognitive behavioural approach, not cognitive behavioural therapy. And a cognitive behavioural approach refers to several assumptions about how people go about making changes in the face of adversity, and definitely includes behaviour.  In my dictionary, behaviour is all about what people actually do…or in other words, their function.  Measuring ‘real world’ behaviour has lagged somewhat behind the ever-expanding range of pen-and-paper assessments.  Maybe this is something occupational and physiotherapists could attend to as a matter of urgency.

Medical people are great too – they help determine any diagnosis (when there is one), they make sure anything ‘fixable’ is ‘fixed’, and often given that ‘white coat’ air of respectability to admonitions from other more lowly beings who say ‘it’s OK to move, you won’t harm yourself’.  At the same time, medical people can be amongst The Worst in a chronic pain management team at prolonging the use of pain reduction approaches (even to the point of quite invasive procedures such as injections and high-tech gadgets – spinal cord stimulator anyone?).

Medical people can be really unhelpful when they see someone who is experiencing a flare-up of pain and immediately start down the track of increasing medication, or reviewing medication or doing another investigation or suggesting another procedure.  I wonder sometimes if medical people are scared of allowing anyone to experience pain, as if people will perish if they have exacerbations of their pain .

The thing is, it’s not the pain intensity itself that is the problem.  Study after study shows that disability and interference from pain doesn’t vary systematically with pain intensity, what does have a great influence on function – is beliefs and attitudes toward having pain.  What our focus needs to be is on reducing distress about having pain – and then on doing important functional activities.

While psychologists and some medical people are pretty good at helping people develop greater tolerance to having pain – the people in the health care team who know the most about doing activity or being occupied are occupational therapists and physiotherapists.

If a person can tolerate their pain (by being less distressed about it) what is the point if they then can’t or don’t do more? At the very least they can do less of the not so good stuff like visiting doctors and using prn medications and being a patient!

I see there are some problems in the management of chronic pain at least in New Zealand.

  1. Firstly there continue to be medical practitioners who can’t resist ‘trying something more’ to reduce pain. And at the same time don’t measure whether pain reduction has changed anything except the frequency (or maybe volume) of complaints from the patient.  I think some medical practitioners are training patients to be afraid of having fluctuations in pain, and instead foster ongoing dependence, treatment seeking and not just polypharmacology, but also invasive ‘high-tech’ procedures.  Some doctors don’t accept that pain may not have a ’cause’ that can be ‘treated’ so the pain can be ‘abolished’.  Maybe some of these doctors haven’t accepted that the brain and central nervous system are always involved in the perception and maintenance of pain and disability.
  2. Secondly I think there are a lot of psychologists who like to do cognitive therapy, really enjoy talking with people, love helping people ‘understand’ themselves – but don’t really like challenging (or encouraging) people to do things differently. Maybe some of these clinical psychologists have not had any undergraduate (or even postgraduate) exposure to pain management, thinking that simply transferring their knowledge about CBT from mental health to chronic pain is enough (well it is enough to get a contract to provide pain management through ACC).  Some psychologists see the problem of function as ‘not my problem’, some see it as ‘far too complex’, and some may not even think about it at all.  After all, the questionnaires show that the person has made improvements, so they must be ‘better’.
  3. Thirdly, the focus on outcomes just is not there within our funding agencies or health care management, not even ACC or Ministry of Health – or, dare I say, DHB.  (These TLA’s are real, not made up!)  Not only this, but information infrastructure doesn’t allow us to describe patterns of referral, outcomes (real world or otherwise!), and what gets measured gets done, but the quality of what gets done is somewhat mysterious.  There is a mismatch between what gets paid for, and what might matter in terms of outcomes for patients/clients.

Now don’t EVEN get me started on the strange and unusual mix of skills that occupational therapists, physiotherapists (and other health people I haven’t yet griped about) bring to the mix… Suffice to say, I can and will point the finger at my own profession, my own practice and way of working!

In the end, while we can recognise the shortcomings of things like FCE, indeed ANY functional assessment, and we know that activity regulation (aka ‘pacing’) is not yet an evidence-based approach for pain management, what occupational therapists and physiotherapists really care about is function. It’s also what our professions know more about than any other profession – that blend of knowledge about biophysical, psychological and social that makes up the internationally recognised model of chronic pain.  We need the other professions (if they’d only do what WORKS!), but they NEED us too.

Whew! got that off my chest.  But wait: there will be more.  Looking forward to seeing the comments flying in!

Correlation (even multivariate analysis) is not causation


ResearchBlogging.org
I’ve been reviewing some of my PhD proposal (it has to be submitted by the end of this week), and considering the topic of coping.  Coping refers to ‘the strategies people use to manage pain and
its impact.’  It is one of the two main topics researched in psychological contributions to the pain experience, with the other being beliefs.

Although coping has been studied extensively, it has primarily been studied in people who are seeking treatment for their pain – and conclusions drawn about what constitutes effective coping is drawn from outcome studies looking at disability scores and correlations between the strategies used.  My question is whether that is the most adequate way of viewing the use of coping strategies, maybe it would be good to look at what people who have never had formal CBT treatment for chronic pain and see what they use.  Anyhow, this editorial by Mark Jensen reviews the tendency for even really experienced researchers to be tempted to use language that suggests causation when a conclusion can only be drawn about the tendency for two (or more) variables to systematically vary in relationship to each other.

He is discussing the findings of Karsdorp and Vlaeyen who examine the associations among psychological variables in a large sample of patients with fibromyalgia. They conclude that two types of avoidance strategy independently predict disability in this cohort of patients.

Jensen states ‘Psychological models of pain often hypothesize causal and mediational associations between different psychological factors or domains’ – the problem with this is that given the close relationships between some of these psychological variables, a ‘multivariate analysis that (1) estimates the associations between these variables and important criterion variables that also (2) controls for other psychological variables, will likely underestimate the importance of the psychological factor(s) being examined.’

What this means is that, in this study, two variables – catastrophising and pacing – were found not to predict disability when each was controlled for the other.  The authors of the study concluded that neither were significant predictors of disability – but what if the two varied systematically with each other because of some unidentified third variable?  Jensen suggests that perhaps depression may influence the use of both catastrophising and pacing, making it seem as though neither were individually significant, but actually confusing the finding because depression was not considered to be a mediating variable.

Jensen suggests ‘In short, negative results from studies that use analyses that control for psychological variables should not be used to draw strong conclusions about the lack of importance of any one variable.’

He finishes by stating ‘their finding that active avoidance is uniquely important in the prediction of disability when controlling for other psychological factors is an important one… but at the same time, one must be constantly vigilant to avoid viewing the findings from correlational studies as suggesting the presence of causal associations’.

He goes on to say  ‘the true (causal) importance of a psychological variable is best identified by experiments that systemically alter the variable in question, and then determine the subsequent effect of a change in the variable on measures of important outcomes.’

This is a timely reminder for us as consumers of research – we really do need to know about research methodology, or we may well skip to the ‘Discussion’ and miss the important details of how the researchers drew those conclusions.  Only then can we decide how much weight we put on the findings.

Jensen, M. (2009). Research on coping with chronic pain: The importance of active avoidance of inappropriate conclusions Pain DOI: 10.1016/j.pain.2009.07.036

Activity levels – a ‘budgeting’ approach


Unlike most of my posts, this one doesn’t have specific research to back it up. I guess this reflects the lack of research in the area of applied pain management! After discussing activity levels, especially over-doing activity, I thought it might be helpful to review some of the ways I’ve worked with people to develop an optimal level of activity that works for them.

My first metaphor is about developing a ‘budget’ of activity. Other words to use might be template or framework, or even timetable! I like the idea of a budget because it suggests that there is a fairly set amount of energy to work with, and while it’s possible to over-spend – usually you have to make that deficit up at some point! Having said this, you can top-up your fund by doing things that can expand your energy level and gradually ‘grow’ your budget over time.

I think the first thing I do is work out what the person’s activity pattern is like.

  • How do they organise their day (do they organise it at all?!).
  • Are they typically over-doers, avoiders or a combination of both?

Then I’m keen to draw on a model such as the pain-related anxiety and avoidance model of Vlaeyen’s to establish some of the factors that may be influencing their activity level. The problem with over-doers and ‘boom and bust’ patterns is that there isn’t a very clear model to use, so it’s much more a case of working through an individualised formulation to determine what the various factors might be influencing their activity pattern. To do this I use a generalised cognitive behavioural model such as Tim Sharp’s CBT modelsharp-model

As you can see, it’s complex and covers almost all of the psychosocial factors involved in the pain experience! Back to activity…

Then I ask the person what they need to achieve in each time period (depending on what we’re working on – days, weeks, hours?). This is where the person’s own sense of what is important to him or her is critical. I may at this point ask why certain activities are so important, especially if there is a deficit of energy available for them to complete everything that they want to.

Every day we make choices about what we can achieve. It’s no different for a person with chronic pain then for someone without chronic pain -except perhaps the expectations and constraints might be a bit different. I’m someone who habitually has ‘things to do’, so I’m inclined to overload myself and expect more from myself than I can actually do. It’s an ongoing learning curve for me to rein myself in to be a little more realistic, to use words like ‘I could do…’, ‘it would be nice to do …’, rather than ‘I must do…’, or ‘I should do…’.

So with a person who has chronic pain, I also work through their underlying thoughts, beliefs and attitudes about how much they have on their ‘to do list’.

The next step is to establish a lower limit of activity to be done in a day – if the person is a habitual under-doer, this is set just a little higher than what they expect to do on a ‘bad day’. If the person is typically an over-doer, setting a realistic activity level is a real challenge – so I might start with scheduling brief rest breaks. The challenge from here in is working with their thoughts, emotions and behaviours to develop a regular and reasonably consistent level of activity each day.

Now you might see I’ve left out the ‘boom and bust’ pattern from the section above. This is because one of the first things to work out is whether there is any ‘boom’ in that pattern at all!! It may be that the person believes they have a boom and bust pattern, but over time the over-activity cycle is actually not very high at all, and instead they’re really deactivated and avoidant. If they really are over-active then under-active, I think the process is about working out the factors that lead to over-activity and scheduling a quote-based level that is above the ‘recovery’ level of activity but below the higher level.

Most people hate this process! I do myself! I’d much rather not have to acknowledge that I’m not super-human (I’m not really!!), that I do have limits, that I have interest and motivation in lots of things but I simply can’t do them all. The factors that lead me to do this include getting a bit of a ‘high’ from being productive, that I’m curious about lots of things and get interested in them which can lead me astray from recognising my fatigue/pain levels and curbing my activity. I’m also not especially good at saying no to others, or myself. And I’m sure I get lots of rewards for being busy. Perhaps at times I feel uncomfortable ‘doing nothing’ – being ‘lazy’.

I don’t think regulating activity levels is at all easy – after all time management courses are one of the more popular ‘self help’ courses in work life! So carefully working through not just the allocation of activities through the day, but also the underlying beliefs and attitudes – and rewards – is a critical part of the process.

Having a ‘budget’ of activity means that it’s possible to ‘borrow’ from another time period
(the next hour, the next day) on the odd occasion, provided that the loan is repaid. Taken to the extreme this can lead straight to that boom and bust pattern, and if that’s continued it’s not an especially great way to live. A bit like living off a credit card! So some sort of prioritising process needs to happen – I think identifying values is one way of doing this. Why is this activity important? What is important over time in the person’s life? Over a week, how much of what they do is aligned with what they really value?

And finally, I really like Steven Covey’s ‘four quadrant’ approach to prioritising. This takes into account the ‘urgent’ and ‘important’ things that happen in life, but encourages a much less stressful ‘important’ but ‘not urgent’ – and very planned – approach to every day.

Fine tuning activity levels


ResearchBlogging.org

A couple of days ago I wrote about activity patterns, and a study from Maastricht University that looked at the variable levels of activity that people with chronic pain can engage in. The study was designed to look at the pattern of activity from day to day, and found ‘… that for most of the participants, their activity levels varied from day to day, with high activity levels interspersed with low activity level days.’

Huijnen, Verbunt, and colleagues suggested that ‘for patients with chronic pain this could represent an activity pattern characterised by interfering involuntary rest stops due to pain. The high level of fluctuations could be a representation of the sawtooth pattern in their activities. Patients go on with their activities till the activity is finished and afterwards they have to take rest to recover.’(2009) While the overall (mean) activity level may be fairly ‘normal’ and not directly associated with their reported disability level, the higher their disability level the higher the peaks and troughs of activity. The conclusion was that ‘patients who have a disabling fluctuating pattern in their activities, [may] benefit more from learning strategies to fine tune their activities during the day instead of increasing their activity level.’

Many self-help books and resources developed for professionals to use contain the concept of activity ‘pacing’ – this is typically about setting a baseline level of activity, and gradually building up activity tolerance until the desired level is achieved. The problem with this concept is that when you ask a person what pacing is, they invariably say something like ‘break the activity up into smaller chunks’ or ‘take breaks in the middle of an activity’ – which can actually lead to pain being the guide and overall lower levels of activity. I wrote about this some time ago when I discussed the lack of evidence for pacing, and a paper by McCracken and Samuels found that it loaded on to a set of ‘passive coping strategies’ used by patients, rather than being an ‘active’ coping strategy (2007).

Perhaps the problem is, as Huijnen & Verbunt et al suggest, one of ‘fine tuning’ activity levels. And maybe the term ‘pacing’ needs to be banished! I suggest calling it either a ‘quota’ system, where a pre-determined amount (either time or portion of an activity) is used, or calling it ‘activity regulation’ – where the amount of activity is regulated just as we regulate emotions, physiological arousal and exercise.

I’m keen to get some sort of definition around this term because while the name itself isn’t important, the pervasive view from both therapists and patients is that pacing involves slowing down how much should be done at one time – and it almost always leads to pain being used as the guide.

In practical terms I think what can happen is this: a person starts on a certain amount of activity, say 10 minutes vacuuming, then 5 minutes dusting, back to vacuuming for 10 minutes, and so on. On a good day, this is manageable – or maybe a little too easy, so the person decides to do a little more – 15 minutes vacuuming. By the end of that day, pain intensity has risen, the person sleeps badly (I’ve written about the relationship between pain intensity and poor sleep – poor sleep leads to increased pain intensity which leads to poor sleep and so on). So the next day, instead of doing 10 minutes of vacuuming, the person does 5 minutes, and sits down to rest in between.

Or perhaps all goes well for a day or two, then a ‘high risk’ situation arises – someone is coming to visit! The person decides to go all out and vacuum furiously and do the whole house, collapsing by the time the visitor arrives. Next day, the person is too sore to do anything.

Or maybe even the person carries on with the paced level of activity, and after a week increases the amount of vacuuming as instructed, but this immediately increases pain intensity (which is expected), but the person forgets this – and adjusts the vacuuming level back to the original amount on the day following.

The key things that may help are these:

  1. Never ever let pain be your guide in setting activity levels!
  2. Do no more on a good day,  no less on a bad
  3. Work through cognitions that may trip you up ‘I must’, ‘I should’
  4. Especially work through ‘I can’t do this because my pain is too bad’
  5. Develop coping strategies for when the pain levels do increase (and they will!)
  6. Remind the person that an increase in pain is to be expected when increasing activity level – but that it will pass and the body will habituate to it
  7. When planning increases in activity level in a graded way, work through at least one increase successfully with the person before you stop your support – this way the person might just see that it’s possible to successfully increase activity without the world falling apart, even though pain levels do increase

Developing activity regulation is as much about thoughts and emotions as it is about planning, fitness, and physical ability.  It’s my belief that any therapist who is helping someone change their activity level either through exercise or daily activities (ie physiotherapists, occupational therapists, nurses, social workers, psychologists) need to actively help the person develop awareness of, and ability to challenge, their thoughts about fluctuations in pain.

HUIJNEN, I., VERBUNT, J., ROELOFS, J., GOOSSENS, M., & PETERS, M. (2009). The disabling role of fluctuations in physical activity in patients with chronic low back pain European Journal of Pain DOI: 10.1016/j.ejpain.2008.12.008

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity
patterns in chronic pain. Pain 2007;130(1–2):119–25.

Coping strategies survey – the results!


Over the next couple of days I’m going to review the coping strategies survey I’ve been running.  I’ve had 33 participants, so it’s not a large sample, but it does represent some of the professions working in the field of chronic pain.

Who responded?

12.5%   Social workers

4.2%     Nurse

29.2%  Occupational therapists

25%      Physiotherapists

12.5%  Medical practitioners

20.8% Psychologists (health or clinical)

plus 4 ‘others’ – students mainly.  You’ll see the total is more than 100% – rounding, or so I understand from SurveyMonkey!

The first set of questions related to defining three terms commonly used in pain management. I’ve just reviewed a paper about ‘pacing’, so it’s interesting to see how these participants defined it.


Question 1 – How do you define ‘pacing’?

15.2%  Working to a pre-defined quota of time or activity task despite fluctuations of pain

45.5% Breaking an activity into smaller pieces rather than completing the entire task

45.5% Starting with an achievable pre-defined quota and gradually increasing this over time despite fluctuations of pain

Other responses:
Breaking activity into smaller pieces, then taking breaks as needed between sections
Managing activity levels so as to be doing the optimal amount in terms of managing pain levels (e.g., not doing too little or pushing yourself too hard)

I’m interested that the concept of pacing is related to pain intensity, and that half the respondents thought it should involve breaking a task down to avoid flare-ups.  This definition would seem to confirm the place of pacing alongside passive coping strategies as McCracken & Samuels found, and the general lack of consensus that Gill & Brown identified in the literature (McCracken & Samuels, 2007; Gill & Brown, 2008).

Now I put this next question in as a bit of a red herring – I personally never use the term ‘task simplification’ with people.  It comes from around the era of the term ‘pacing’, so probably in the mid-1970’s, and is related to conserving energy as you might do for something like multiple sclerosis, or chronic obstructive airways disease – in other words, where the person is unlikely to regain fitness.  It’s been brought into pain management probably because of the relationship between early ways of coping with rheumatoid arthritis (in the same way as pacing was), although over time the management of rheumatoid arthritis has moved from reducing activity to maintaining activity despite flare-ups.

Question 2 – How do you define ‘task simplification’ to a client/patient?

42.4% Finding the most efficient way to carry out a task

3.0%   Deciding whether a task needs to be carried out at all

36.4% Breaking a task into smaller parts

18.2% Reducing the demands of a task so that it can be carried out without flaring pain up

Other responses:

I don’t – I think it infers avoidance.

Task persistence is a term that isn’t often used by patients in relation to managing their pain – but is one skill that health professionals might consider important.  I think it forms part of activity management because in order to increase overall activity tolerance, it’s necessary to persist over the existing ‘limit’ to a certain extent.  Task persistence often needs to be used within a work situation in order to meet a deadline, achieve an outcome, or make it through to the end of a working day!

Question 3 – How do you describe ‘activity persistence’ or ‘task persistence’ to a client/patient?

15.2%   Continuing with an activity until it is completed

51.5%   Continuing with an activity until the pre-determined quota is reached, despite fluctuations in pain

36.4%  Completing as much of an activity as is possible but not so pain flares up

Other Comments:
I don’t use this term
Pain may increase (within tolerance) but calms down on stopping activity

This is the first part of my survey – more tomorrow on when to use different types of coping strategy. If you’ve enjoyed reading this post, and want to know more – you can click on the RSS feed link above, or you can bookmark this blog and come on back!  Don’t forget to comment (I love them – it makes me feel wanted!), and let me know what you think or what you want more of.

J GILL, C BROWN (2008). A structured review of the evidence for pacing as a chronic pain intervention European Journal of Pain DOI: 10.1016/j.ejpain.2008.03.011

McCracken, L. M., & Samuel, V. M. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain Vol 130(1-2) Jul 2007, 119-125.