What do people want from pain management?

The short answer is often “take my pain away” – and we’d be foolish to ignore the impact of pain intensity on distress and disability. At the same time there’s more than enough research showing that if treatment only emphasises pain intensity (1) it may not be achievable for many, especially if we take into account the small effect sizes on pain intensity from exercise, medications and psychological therapies; and (2) even if pain is reduced, it may not translate into improvements in daily life.

The slightly more complex answer lies behind the desire to “take my pain away.” We need to be less superficial in our responses to this simple answer – and take a hard look at what people believe pain represents to them, and what they want to be able to do if pain is reduced.

A paper in the current issue of Pain piqued my interest as the authors explored what people with ongoing pain chose as treatments when given the choice. The paper itself is a systematic review of research papers using discrete choice experiments to determine preferences of people with pain when deciding on treatment.

Discrete choice experiments assume that treatments can be described by their important features, such as where therapy is administered, how often, the target outcome, adverse effects and so on. The approach also assumes that people make choices based on their personal weighting or the value they place on those features. As the experiment progresses, participants are asked to weight each attribute and choose their preferences as they gradually narrow the number of choices. (This open access paper outlines DCE in health in a little more detail – click, or you can take a look at this YouTube video summarising DCE – click).

Now there are some issues I have about this approach, because it also assumes that people make logical choices, that they have freedom to choose independently of other influences (like medico-legal requirements or cultural factors), and it also assumes that people make decisions in the same way that economic modeling finds – and I’m not so sure of that! Having said this, the methodology does shed some light on what people might value provided these assumptions hold true.

Following a systematic search of the databases, the authors identified 51 studies with a total of 4065 participants included, and were published between 2004 and 2021. Most of the studies looked at low back pain and/or osteoarthritis (high prevalence = lots of participants = easy to access). When analysing the attributes participants were asked to choose from, the authors identified the following (not all listed):

• Capacity to realise daily life activities – walking, domestic activities, social activities, activities of daily living, difficulties doing daily tasks etc
• Risk of adverse events – side effects, cardiovascular events, upper gastrointestinal problems etc
• Effectiveness on pain reduction – maximum pain intensity, improvement in pain, pain intensity, reduction in pain etc
• Out of pocket costs – direct payment, premium reduction, cost etc
• Treatment frequency – schedule, frequency, time
• Onset of treatment efficacy – waiting time for effect, time before able to exercise
• Design – individual, group, supervised
• Travel time
• Relapse risk
• Duration of effectiveness

What did they find?

Unsurprisingly, they identified that reduced pain was highly desired, and again, unsurprisingly, they found that the risk of adverse events was pretty darned important. What might be surprising is the capacity to realise daily life activities was the third most frequently rated attribute! In other words, while pain reduction and not having harmful effects was important, the capacity to do what matters is absolutely crucial!

Something I found rather interesting, though, is located deep in the manuscript: neither psychological interventions nor manual therapy have been investigated with this methodology. Now that is odd. And something that sorely needs to be examined because, at least in New Zealand, ‘psychology’ for pain is (almost) obligatory for pain programmes, at least those provided under the auspices of our national compensation organisation. What this means is, we don’t know whether people would choose psychological approaches over other forms of treatment for pain… and isn’t it time we did?

The authors point out that IMMPACT (Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials) recommends six core outcomes when evaluating the effectiveness of treatments for chronic pain. These are pain, physical function, emotional functioning, participant ratings of global improvement and satisfaction with treatment, adverse events, and participant disposition. Interestingly, there’s no specific mention of enhanced capacity to do daily life – it’s assumed, I suppose, that improved physical and emotional functioning translate to improved daily life, but they’re not a direct equivalent (it’s an assumption, right?). Given the differences found between what people do in a treatment setting, vs what they do do in their own life contexts, maybe this is something we should pay far more attention to.

I also note that the attributes don’t include in the need to adopt lifelong changes in routines, choices, activities, participation. Things like exercise, for example, along with medications, often need to be carried out over long periods of time – years, even. And research doesn’t manage to follow people over long periods because it’s very expensive and people drop out. And yet – this is exactly what people with pain must do.

Sensitively, the authors also point out that people at different life ages and stages may make different choices. If I’m nearing the end of my life, I might be more willing to ‘take the risk’ of an adverse event over the need to make long-lasting changes to my daily routine – the quick fix beckons! Concurrently, I’m curious that something clinicians consistently complain about: the desire people have for ‘quick fixes’ or immediate results ranked relatively low on the frequency table – at 1/3 of the ranking frequency. It’s the hope that treatment will enable people to do what matters in their life that seems so important! Who would have guessed…

Now my question is: do currently popular treatments (at least in New Zealand) like exercise and ‘psychological therapies’ have a useful impact on what people with pain rate so highly? Do they actually translate into enhanced capacity to engage in what matters to individuals? If they do – how is this measured? Does a ‘disability’ measure capture what’s important? Does a ‘quality of life’ measure do that well? When I value being able to do some things that really matter to me, but don’t matter to my partner or my next-door-neighbour, are we measuring these individual differences? And in what contexts? I might be happy to compromise on my ability to walk quickly over rough ground in the weekend, but what about my willingness to compromise on my walking at work? How about my ability to sit? What if I’m OK sitting with a soft cushion under my butt at home, but can’t carry that thing around with me to work or the movies or the restaurant or church?

Daily life activities are THE area of expertise of occupational therapists. If being able to do daily life is what people want, why oh why are so few occupational therapists included in pain programmes – even a tertiary level provider here in my home city? Come on, let’s get real about what occupational therapists know about! (end of rant!).

Zhu, M., Dong, D., Lo, H. H., Wong, S. Y., Mo, P. K., & Sit, R. W. (2022). Patient preferences in the treatment of chronic musculoskeletal pain: a systematic review of discrete choice experiments. Pain. 164(4). 675-689. https://doi.org/10.1097/j.pain.0000000000002775

“N-of-1” research – A clinically relevant research strategy!

I’ve been banging on about single case experimental research designs (SCED) ever since I studied with Prof Neville Blampied at University of Canterbury. Prof Blampied (now retired) was enthusiastic about this approach because it allows clinicians to scientifically test whether an intervention has an effect in an individual – but he took it further with a very cool graphical analysis that allows multiple cases to be studied and plotted using the modified Brinley Plot (Blampied, 2017), and I’ll be discussing it later in this series. Suffice to say, I love this approach to research because it allows clinicians to study what happens especially when the group of participants might be quite unique so RCTs can’t readily be conducted. For example, people living with CRPS!

Krasny-Pacini & Evans (2018) make the case that SCED are useful when:

1. Evaluating the efficacy of a current intervention for one particular patient in daily clinical practice to provide the best treatment based on evidence rather than clinical impressions;
2. Conducting research in a clinical rehabilitation setting (outside a research team) with a single or few patients;
3. Piloting a novel intervention, or application/modification of a known intervention to an atypical case or other condition/type of patients that the intervention was originally designed for;
4. Investigating which part of an intervention package is effective;

5. working with rare conditions or unusual target of intervention, for which there would never be enough patients for a group study;

6. Impossibility to obtain a homogenous sample of patients for a group study;
7. Time limitation (e.g. a study needing to be completed within 8 months, e.g. for a master degree research. . .) or limited funding not allowing recruitment of a group.

So let’s think of how we might go about doing a single case experiment in the clinic.

First step, we need to think hard about what we want to measure. It’s not likely you’ll find an already-developed measure that is tailored to both the person and the treatment you want to use. There are key characteristics for this measure that you’ll need to consider (these come from the SCRIBE guidelines – see Tate, et al., 2016). You’ll want to look for target behaviours “relevant to the behaviour in question and that best match the intervention as well as accurate in their measurement”; “specific, observable and replicable”; “inter-observe agreement on the target behaviour is needed”.

You’ll also want to think of the burden on the person completing the measures, because mostly these will be carried out intensively over a day/week or even a therapy session.

Some examples, drawn from the Krasny-Pacini & Evans (2018) paper include:

• the number of steps a person does in a day
• time it takes to get dressed
• VAS for pain
• self-rated confidence and satisfaction with an activity
• Goal attainment scale (patient-specific goals rated on a scale between -2 and +2) – this link takes you to a manual for using GAS [click]
• the time a person heads to bed, and the time they wake up and get out of bed

You can choose when to do the measurements, but because one of our aims is to generalise the learning, I think it’s useful to ask the person to complete these daily.

You’ll also need to include a control measure – these are measures that aren’t expected to change as a result of your therapy but are affected by the problem and help to demonstrate that progress is about the therapy and not just natural progression or regression to the mean, or attention etc. For example, if you’re looking at helping someone develop a regular bedtime and wakeup time, you might want to measure the time they have breakfast, or the number of steps they do in a day.

Generalisation measures are really important in rehabilitation because, after all, we hope that what we do in our therapy will have an effect on daily life outside of therapy! These measures should assess the intervention’s effect on ‘untrained’ tasks, for example we could measure self-rated confidence and satisfaction on driving or walking if we’ve been focusing on activity management (pacing). We’d hope that by using pacing and planning, the person would feel more confident to drive places because they have more energy and less pain. It’s not as necessary to take generalisation measures as often as the target behaviour, but that can be an option, alternatively you could measure pre and post – and of course, follow-up.

Procedural data are measures that show when a person implements the intervention, and these show the relationship between the intervention and the target we hope to influence. So, if we’ve used something like a mindfulness exercise before bed, we hope the intevention might reduce worry and the person will wake feeling refreshed, so we’d monitor (a) that they’ve done the mindfulness that night; (b) that they feel less worried in the morning; and (c) that they wake feeling refreshed. All of these can be measured using a simple yes/no (for the mindfulness), and a 0 – 10 numeric rating scale with appropriate anchors (for less worry, and feeling refreshed).

If you’re starting to think what you could measure – try one of these yourself! Start by deciding what you’d like to change, for example, feeling less worried. Decide on the intervention, for example using a mindfulness activity at night. Add in a measure of ‘feeling refreshed’. Keep a notepad by your bed and each night, record whether you did the mindfulness activity, then in the morning record your level of worry 0 = not at all worried, 10 = extremely worried; and record your feeling of refreshment 0 = not at all refreshed, 10 = incredibly refreshed.

If you want to, you can set up a Google Docs form, and graph your results for each day. At the end of each day you could include a note about how stressful your day has been as another measurement to add to the mix.

For patients, using text messaging is really helpful – if you have a clinic SMS service, you could use this to send the text messages to your client and they can text back. Many of the SMS services can automatically record a client’s response, and this makes it easy to monitor their progress (and yours if you want to try it out!).

There are some other designs you can use – and remember I mentioned you’d usually want to record a baseline where you don’t use the intervention. As a start, do this for at least a week/seven days, but you’re looking to establish any patterns so that when you do the intervention you can distinguish between random variations across a week and change that occurs in response to your therapy.

Have a go – and let me know how it works for you!

Blampied, N. M. (2017). Analyzing Therapeutic Change Using Modified Brinley Plots: History, Construction, and Interpretation. Behavior Therapy, 48(1), 115-127. https://doi.org/https://doi.org/10.1016/j.beth.2016.09.002

Krasny-Pacini, A., & Evans, J. (2018). Single-case experimental designs to assess intervention effectiveness in rehabilitation: A practical guide. Annals of Physical & Rehabilitation Medicine, 61(3), 164-179. https://doi.org/10.1016/j.rehab.2017.12.002

Tate, R. L., Perdices, M., Rosenkoetter, U., McDonald, S., Togher, L., Shadish, W., Horner, R., Kratochwill, T., Barlow, D. H., Kazdin, A., Sampson, M., Shamseer, L., & Vohra, S. (2016). The Single-Case Reporting Guideline In BEhavioural Interventions (SCRIBE) 2016: Explanation and elaboration. Archives of Scientific Psychology, 4(1), 10-31. https://doi.org/10.1037/arc0000027

If a rose is a rose by any other name, how should we study treatment processes in pain management & rehabilitation?

A new instalment in my series about intensive longitudinal studies, aka ecological momentary assessment (and a host of other names for methods used to study daily life in real time in the real world).

Daily life is the focus of occupational therapy – doing what needs to be done, or a person wants to do, in everyday life. It’s complex because unlike a laboratory (or a large, well-controlled randomised controlled trial) daily life is messy and there is no way to control all the interacting factors that influence why a person does what they do. A technical term for the processes involved is microtemporality, or the relationships between factors in the short-term, like hours or days.

For example, let’s take the effect of a cup of coffee on my alertness when writing each day. I get up in the morning, feeling sluggish and not very coherent. I make that first delicious cup of coffee, slurp it down while I read the news headlines, and about 20 minutes later I start feeling a lot perkier and get cracking on my writing. Over the morning, my pep drops and I grab another cup or a go for a brief walk or catch up with a friend, and once again I feel energised.

If I wanted to see the effect of coffee on alertness I could do a RCT, making the conditions standard for all participants, controlling for the hours of sleep they had, giving them all a standard dose of caffeine and a standard cognitive test. Provided I have chosen people at random, so the chance of being in either the control group (who got the Devil’s drink, decaffeinated pseudo-coffee) or the experimental group was a toss of the coin, and provided we assume that anyone who has coffee will respond in the same way, and the tests were all equally valid and reliable, and the testing context is something like the world participants will be in, the results ought to tell us two things: (1) we can safely reject the null hypothesis (that there is no difference between decaffeinated coffee and real coffee on alertness) and (2) we can generalise from the results to what happens in the real world.

Now of course, this is how most of our research is carried out (or the ‘trustworthy’ research we rely on) – but what it doesn’t tell us as occupational therapists is whether this person in front of me will be in the very top or bottom of the bell curve in their response, and whether this will have any impact on what they need to do today.

For this unique person, we might choose another method, because we’re dealing only with this one person not the rest of the population, and we’re interested in the real world impact of coffee on this individual’s feelings of alertness. We can choose single case experimental design, where we ask the person to rate their alertness four or five times every day while they go about their usual daily life. We do this for long enough until we can see any patterns in their level of alertness ratings, and be satisfied that we’re observing their ‘normal’. During this time we don’t ask them to change their coffee drinking habits, but we do ask them to record their intake.

Then we get nasty, we give them the Devil’s decaf instead of the real deliciousness, but we do this without them knowing! So it looks just the same as the real thing, comes in the same container with the same labeling, and hope that it has the same delicious flavour. We ask them to carry on drinking as normal, and rating their alertness levels four or five times every day, and we do this for another two weeks. The only things we need to watch carefully for is that they don’t suspect a thing, and that their daily life doesn’t change (that’s why we do a baseline first).

Just because we’re a bit obsessed, and because we’re interested in the real world impact, we sneakily switch out the rubbish decaf and replace it with the real thing – again without the person knowing – and we get them to carry on recording. If we’re really obsessed, we can switch the real thing out after two weeks, and replace with the pseudo coffee, and rinse and repeat.

Now in this example we’re only recording two things: the self-reported level of alertness, and whether it’s the real coffee or not (but the person doesn’t suspect a thing, so doesn’t know we’ve been so incredibly devious).

We can then draw up some cool graphs to show the level of alertness changes over the course of each day, and with and without the real coffee. Just by eyeballing the graphs we can probably tell what’s going on…

Usually in pain management and rehabilitation we’re investigating the impact of more than one factor on something else. For example, we’re interested in pain intensity and sleep, or worry and pain intensity and sleep. This makes the statistics a bit more complex, because the relationships might not be as direct as coffee on alertness! For example, is it pain intensity that influences how much worrying a person does, and does the worry directly affect sleep? Or is it having a night of rotten sleep that directly influences worrying and then pain intensity increases?

To begin with however, occupational therapists could spend some time considering single case experimental designs with a very simple strategy such as I’ve described above. It’s not easy because we rarely ‘administer’ an intervention that doesn’t have lingering effects. For example, we can’t make someone forget something we’ve told them. This means we can’t substitute ‘real’ advice with ‘fake’ advice like we can with coffee and decaf. The ‘real’ advice will likely hang around in the person’s memory, as will the ‘fake’ advice, so they’ll influence how much the person believes and then acts on that information. There are strategies to get around this such as multiple baseline designs (see the Kazdin (2019) and Kratochwill et al., (2012) article for their suggestions as to what this looks like), and for a rehabilitation-oriented paper, Krasny-Pacini & Evans (2018) is a great resource.

If you’re intrigued by this way of systematically doing research with individuals but wonder if it’s been used in pain management – fear not! Some of the most influential researchers in the game have used this approach, and I’ve included a list below – it’s not exhaustive…

Next post I’ll look at some practical ways to introduce single case intensive longitudinal design into your practice. BTW It’s not just for occupational therapists – the paper by Ruissen et al., (2022) looks at physical activity and psychological processes, so everyone is invited to this party!

Selected Pain Rehab SCED studies (from oldest to most recent)

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

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

de Jong, J. R., Vlaeyen, J. W., Onghena, P., Cuypers, C., den Hollander, M., & Ruijgrok, J. (2005). Reduction of pain-related fear in complex regional pain syndrome type I: the application of graded exposure in vivo. Pain, 116(3), 264-275. https://doi.org/10.1016/j.pain.2005.04.019

de Jong, J. R., Vlaeyen, J. W. S., Onghena, P., Goossens, M. E. J. B., Geilen, M., & Mulder, H. (2005). Fear of Movement/(Re)injury in Chronic Low Back Pain: Education or Exposure In Vivo as Mediator to Fear Reduction? Clinical Journal of Pain Special Topic Series: Cognitive Behavioral Treatment for Chronic Pain January/February, 21(1), 9-17.

Onghena, P., & Edgington, E. S. (2005). Customization of pain treatments: single-case design and analysis. Clinical Journal of Pain, 21(1), 56-68.

Lundervold, D. A., Talley, C., & Buermann, M. (2006). Effect of Behavioral Activation Treatment on fibromyalgia-related pain anxiety cognition. International Journal of Behavioral Consultation and Therapy, 2(1), 73-84.

Flink, I. K., Nicholas, M. K., Boersma, K., & Linton, S. J. (2009). Reducing the threat value of chronic pain: A preliminary replicated single-case study of interoceptive exposure versus distraction in six individuals with chronic back pain. Behaviour Research and Therapy, 47(8), 721-728. https://doi.org/doi:10.1016/j.brat.2009.05.003

Schemer, L., Vlaeyen, J. W., Doerr, J. M., Skoluda, N., Nater, U. M., Rief, W., & Glombiewski, J. A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behaviour Research and Therapy, 108, 58-67. https://doi.org/https://doi.org/10.1016/j.brat.2018.07.002

Caneiro, J. P., Smith, A., Linton, S. J., Moseley, G. L., & O’Sullivan, P. (2019). How does change unfold? an evaluation of the process of change in four people with chronic low back pain and high pain-related fear managed with Cognitive Functional Therapy: A replicated single-case experimental design study. Behavior Research & Therapy, 117, 28-39. https://doi.org/10.1016/j.brat.2019.02.007

Svanberg, M., Johansson, A. C., & Boersma, K. (2019). Does validation and alliance during the multimodal investigation affect patients’ acceptance of chronic pain? An experimental single case study. Scandinavian Journal of Pain, 19(1), 73-82.

E. Simons, L., Vlaeyen, J. W. S., Declercq, L., M. Smith, A., Beebe, J., Hogan, M., Li, E., A. Kronman, C., Mahmud, F., R. Corey, J., B. Sieberg, C., & Ploski, C. (2020). Avoid or engage? Outcomes of graded exposure in youth with chronic pain using a sequential replicated single-case randomized design. Pain, 161(3), 520-531.

Hollander, M. D., de Jong, J., Onghena, P., & Vlaeyen, J. W. S. (2020). Generalization of exposure in vivo in Complex Regional Pain Syndrome type I. Behaviour Research and Therapy, 124. https://doi.org/https://doi.org/10.1016/j.brat.2019.103511

Edwin de Raaij, E. J., Harriet Wittink, H., Francois Maissan, J. F., Jos Twisk, J., & Raymond Ostelo, R. (2022). Illness perceptions; exploring mediators and/or moderators in disabling persistent low back pain. Multiple baseline single-case experimental design. BMC Musculoskeletal Disorders, 23(1), 140. https://doi.org/10.1186/s12891-022-05031-3

References

Kazdin, A. E. (2019). Single-case experimental designs. Evaluating interventions in research and clinical practice. Behav Res Ther, 117, 3-17. https://doi.org/10.1016/j.brat.2018.11.015

Krasny-Pacini, A., & Evans, J. (2018). Single-case experimental designs to assess intervention effectiveness in rehabilitation: A practical guide. Annals of Physical & Rehabilitation Medicine, 61(3), 164-179. https://doi.org/10.1016/j.rehab.2017.12.002

Kratochwill, T. R., Hitchcock, J. H., Horner, R. H., Levin, J. R., Odom, S. L., Rindskopf, D. M., & Shadish, W. R. (2012). Single-Case Intervention Research Design Standards. Remedial and Special Education, 34(1), 26-38. https://doi.org/10.1177/0741932512452794

Ruissen, G. R., Zumbo, B. D., Rhodes, R. E., Puterman, E., & Beauchamp, M. R. (2022). Analysis of dynamic psychological processes to understand and promote physical activity behaviour using intensive longitudinal methods: a primer. Health Psychology Review, 16(4), 492-525. https://doi.org/10.1080/17437199.2021.1987953

Pain concepts for practice: Occupational therapists

Registration opens 11 Feburary 2023, click here for more details – click

Numbers limited to 20 to ensure a great learning experience.

Fundamental concepts for clinical practice including pain neurobiology, assessment, formulation and therapy.

New year, new you! 10 Steps to Change Your Life!

Are you setting goals for this year? Did you decide to get fit? Eat healthier? Spend more time with your family? Be more mindful? Read on for my famous 10 steps to change your life!

Bah, humbug!

Reflect for a moment on what you’ve just read. Head to Google and do a search using the terms “New Year” and see what you come up with. My search page showed, amongst all the horrific news of car smashes and events for the holiday season, topics like “New Year Bootcamp: Get rid of your debt”, “cook something new every week”, “read more books”, “create a cleaning schedule you’ll stick to”…

Ever wonder why we do this? Every single year?

First, we buy into the idea that our life right now isn’t good enough. There are improvements we can [read ‘should’] make.

Then we decide what “good” looks like. Better finances, healthier diet, less time on devices, cleaner and tidier house…whatever.

We then read all the things we should do – apparently, improving body, mind and soul is good for… the soul.

The popular “experts” then tell us to use a planner, tick off daily fitness goals, and tackle small actions frequently.

Betcha like anything most of us will fail. Even if we begin with the best of intentions.

This year, I’m not doing “goals” – I’ve bought into the over-use of SMART goals for too long, and I’m rejecting them. Why? Because life begins to look like a whole bunch of tick boxes, things to do, keeping the “eye on the prize” at the end. But when is “the end”? Is it a set of “yes! I’ve done it” achievements? Little celebrations? Or do we feel coerced into setting yet another goal? Can goals prevent us from being present to the intrinsic nature of daily life? I think so, at least sometimes. A goal focus can take us away from appreciating what we have right now, while also detracting from the process of going through each day. We can lose the joy of running, for example, if we’re only looking to the finish line. We can forget the pleasure of fishing in beautiful natural surroundings if we’re only looking to hook a fish!

So, as a start to this year, I’m sitting still. I’m noticing my Monday morning routine as I slurp my coffee and sit at my computer to write my blog. I’m making a choice to be present with my thoughts and ponderings. I’m looking back at the blog posts I’ve made since 2007 – all 1262 of them! – and feeling proud of my accomplishment. I’m revisiting my “why” or the values that underpin my writing. I’m acknowledging that I’ve chosen to put my voice out there, whether others read what I write or not (FWIW readership is low compared with the heady days of 2008 and 2009!). These choices aren’t in a weird pseudo-spiritual mindful sort of way, just a nod to my habits and the underlying reasons for doing what I do.

I’ve been pondering the drive clinicians have to set goals with patients, and to record achievements. As if these exist outside of the person’s context and all the other influences on what a person can and does do. There are even posts declaiming patients for not “doing the work” even after the explanations and rationales are presented, as if the only factor involved in doing something is whether it has a good enough reason for it to be done. This attitude is especially pertinent when a person lives with persistent pain, and is embroiled in a compensation system with expectations for recovery.

I suppose I’m looking for more attention to be paid to strengths people demonstrate as they live with persistent pain. More awareness of the complexity of living with what persistent pain entails (see this post for more). And for us as clinicians to be more content with what is, despite limitations and uncertainty, ambiguity, frustration and limited ‘power’ to make changes happen.

Contentment is at the heart of “fulfillment in life” (Cordaro, et al., 2016). It’s an emotion with connotations of peace, life satisfaction, and, again according to Cordaro and colleagues, “a perception of completeness in the present moment.” In English, contentment invokes a sense of “having enough” and a sense of acceptance whether the situation is desirable or undesirable (Cordaro, et al, 2016, p.224). Contentment, in contrast to happiness, is considered a low arousal state: that is, when we feel content we experience reduced heart rate, skin conductance and is associated with serotonergic activity, while happiness in contrast activates higher arousal states including dopaminergic responses (Dustin et al., 2019). The table below gives some interesting comparisons between the “reward” and the “contentment” states in humans – take it with a grain of salt, but it makes for useful pondering.

When we think about helping people with persistent pain, how often do we consider contentment as a long-term outcome? To be content that, despite all the hard work the person and their healthcare team and their family and colleagues, this person has achieved what they can. Do we even have this conversation with the person? Giving them the right to call it quits with constantly striving for more.

How can we develop contentment for ourselves and for the people we work with? Should we guide people towards activities that foster contentment? These will likely be the leisure activities that take time, that involve giving without a focus on receiving, that calm people, that invoke nurturing (plants, animals, people), and probably those that involve moderate intensity movement practices (Wild & Woodward, 2019). I hope we’ll draw on occupational therapy research and practice, because these activities will likely be long-term practices for daily life contentment, and daily life is our occupational therapy focus.

For ourselves, I suspect fostering contentment will be more difficult. Our jobs, often, depend on finding out what is wrong and setting goals for a future state, not ideal for those wanting to be OK with what is. We often work in highly stressful and demanding contexts with numerous insults to our moral ideals and values. We debate ideas and approaches to our work with vigour. We make judgements about our own performance and that of others. We often find our expectations aren’t fulfilled and that we can’t do what we think/know would be better.

I’ll leave you with a series of statements about contentment compared with other states that can be related to contentment (Cordaro et al., 2016, p.229). It helps clarify, perhaps, what we might do for ourselves in this new year. Happy 2023 everyone!

Cordaro, D. T., Brackett, M., Glass, L., & Anderson, C. L. (2016). Contentment: Perceived Completeness across Cultures and Traditions. Review of General Psychology, 20(3), 221-235. https://doi.org/10.1037/gpr0000082

Dustin, D. L., Zajchowski, C. A. B., & Schwab, K. A. (2019). The biochemistry behind human behavior: Implications for leisure sciences and services. Leisure Sciences, 41(6), 542-549. https://doi.org/10.1080/01490400.2019.1597793

Lustig, R. (2017). The hacking of the American mind: The science behind the corporate takeover of our bodies and brains. New York, NY: Avery.

Wild, K., & Woodward, A. (2019). Why are cyclists the happiest commuters? Health, pleasure and the e-bike. Journal of Transport & Health, 14. https://doi.org/10.1016/j.jth.2019.05.008

On making things easier…Occupational therapists and ‘compensatory’ approaches

If there is one part of occupational therapy practice that gets more of my middle-aged grumpiness than any other, it’s occupational therapists using compensatory approaches for managing pain. And like anything, it’s complicated and nuanced. So here’s my attempt to work my way through the quagmire.

Compensatory approaches consist of a whole range of interventions that aim to “make up for” a deficit in a person’s occupational performance (see Nicholson & Hayward (2022) for a discussion of compensatory approaches in “functional neurological disorder”). The rationale for compensatory approaches is that by employing these strategies, a person is able to do what they need and want to do in daily life: the raison d’etre for occupational therapy (WFOT, 2012). End of story, right? If the person wants to be able to use the toilet independently, then a piece of equipment (a rail, a toilet seat, a long-handled wiper, easily removed and replaced clothing) makes sense, surely?

Short answer is no, not always. And long answer is – well, it depends.

First of all, let’s take a quick look at compensatory approaches used with people experiencing pain. Remember that people seeing occupational therapists may have acute post-surgical pain (eg post arthroplasty pain) or they may have long-term pain from conditions like osteoarthritis, rheumatoid arthritis, multiple sclerosis etc. In an acute hospital setting, it makes sense for someone to be helped to leave the hospital ward by providing them with a safe way to manage important daily life tasks such as using a toilet, shower/bath, getting dressed, making a meal. The intention behind using a compensatory approach is to give short-term strategies to foster independence, or to provide strategies to “make up for” functional deficits the person may never overcome.

The strategies can include adaptive equipment – I’ve mentioned the ubiquitous raised toilet seat and rails, but there are also chair raisers, bathboards, commodes, kitchen trolleys and so on. Strategies can also include “ergonomic”* approaches intended to reduce biomechanical demands, and often applied in the workplace such as adjustable office chairs, wrist rests, monitor height adjustment, sit/stand desks, lighting etc. Occupational therapists might discuss task simplification, where people are encouraged to consider whether a task needs to be done, needs to be done in a particular way, needs to be done right now, or needs to be done by that person. Activity pacing could be added to the list: choosing when and how to carry out various daily life tasks over the course of a day, a week, a month. So far, so good.

The problems arising from this approach lie in its long-term use, or use in a rehabilitation context. Let me unpack why.

In rehabilitation, our aims are to support a person to go through a process of change (relating to their health and the impact of a disease or disorder) that aims to enhance health outcomes including quality of life (Jehanne Dubouloz, et al., 2010). The person’s capabilities are in a state of flux during this process, and our intentions are (usually) to improve the person’s ability to do daily life tasks. Early rehabilitation might occur in a hospital setting, but generally the expectation is that the person will end up doing their daily life in their own context. In many cases, people don’t get admitted to a hospital, but receive all their rehabilitation as an outpatient, or in their own home.

In persistent pain management and rehabilitation, there are often two phases: 1) the secondary prevention phase, where the focus is on reducing or ameliorating the impact of pain on daily life and often focusing on reducing pain, increasing function, reducing healthcare use, reducing distress and enhancing quality of life. 2) the tertiary prevention phase, where the focus is less on reducing pain (although this is still part of the picture) and much more on helping the person do what matters in daily life in the presence of pain, increasing function, reducing healthcare use, reducing distress and enhancing quality of life. Good examples of occupational therapy for persistent pain are in the literature, although like most interventions, the results are equivocal (eg Nielsen, et al., 2021). The main distinction between these two phases lies in how much attention is paid to pain reduction or elimination. Perhaps this is where so many of our conversations about pain management and rehabilitation come unstuck, because the point at which we (the person and his or her clinician) discuss the likelihood of pain persisting despite all of our best efforts is pretty opaque. We simply don’t know, and we have very little to guide us, and furthermore, both clinicians and people living with pain are loath to talk about what is a highly challenging topic. More about that some other time!

For occupational therapists, offering compensatory equipment during the secondary prevention phase might be where we come unstuck. While they help the person do what matters to them, if they are not reviewed and gradually removed, they can foster remaining stuck with that technique or strategy with all its inherent limitations.

What are those limitations? Well, take the example of a raised toilet seat – great when it’s available for use in a person’s home, but pretty darned useless when that person is out doing the grocery shopping, visiting another family member, going to a restaurant or the cinema. Toilet seat raisers are not the easiest thing to carry around! Similarly with a cushion to make sitting easier: fabulous for reducing discomfort, but then you have to carry the thing around wherever you go!

My point is that when a person’s capabilities are changing, so must our solutions. Occupational therapists need to be responsive to changes in a person’s function, and change compensatory strategies accordingly. When this doesn’t occur, we risk working at odds with the rehabilitative approach used by other team members.

Am I saying don’t use compensatory approaches? Not at all! I’ll be very happy to use task simplification or a shower stool if I return home following hip or knee arthroplasty. And if my cognitive capabilities are limited as they were when I had post-concussion syndrome, I’m very happy to incorporate activity management, fatigue management and compensatory ‘aide memoirs’ (my ever-handy lists and diary!) as part of my life – until I don’t need them any more. Thankfully I had great therapists who helped fade or withdraw the range of compensatory supports I used as my recovery progressed.

Soon I’ll be writing about a framework occupational therapists (and other rehabilitation and pain management clinicians) can use to review their therapeutic approaches. In the meantime, it’s crucial for occupational therapists to take the time to understand the factors contributing to a person’s difficulty doing daily life. If those factors are able to be changed, and if the context is not constrained by “we must get this person out of hospital”, then perhaps we need to stop and think carefully about when, where and whether a compensatory approach is useful.

*I use the term “ergonomic” in quotes because technically, ergonomic approaches are not just about office equipment, but is actually a larger and almost philosophical practice of ensuring that work fits the person/humans doing the tasks. It sprang from work undertaken during the Second World War when it was found that dashboards on aeroplanes, and the machines that fabricated parts for them, did not work for most people. Essentially, it is a systems-based approach to ensuring human capabilities and limitations are considered during the design of workplaces to minimise errors, maximise productivity, reduce cognitive load, and enhance performance.

Jehanne Dubouloz, C., King, J., Ashe, B., Paterson, B., Chevrier, J., & Moldoveanu, M. (2010). The process of transformation in rehabilitation: what does it look like?. International Journal of Therapy and Rehabilitation, 17(11), 604-615.

Nicholson, C., Hayward, K. (2022). Occupational Therapy: Focus on Function. In: LaFaver, K., Maurer, C.W., Nicholson, T.R., Perez, D.L. (eds) Functional Movement Disorder. Current Clinical Neurology. Humana, Cham. https://doi.org/10.1007/978-3-030-86495-8_24

Nielsen, S. S., Christensen, J. R., Søndergaard, J., Mogensen, V. O., Enemark Larsen, A., Skou, S. T., & Simonÿ, C. (2021). Feasibility assessment of an occupational therapy lifestyle intervention added to multidisciplinary chronic pain treatment at a Danish pain centre: a qualitative evaluation from the perspectives of patients and clinicians. International Journal of Qualitative Studies on Health and Well-being, 16(1), 1949900.

World Federation of Occupational Therapists. Statement of occupational therapy. 2012. http://www.wfot.org/about-occupational-therapy.

What do occupational therapists add to pain management/rehabilitation?

Coming from a small profession that has side-stepped (more or less) a conventional biomedical model, I’ve found my inclusion in pain management and rehabilitation is not always easily understood by other clinicians. It doesn’t help that occupational therapists practice in very diverse settings, and what we do may look superficially like handing out raised toilet seats, playing with kids, doing work-site assessments or hand therapy!

Today I hope to remedy this a bit, and extend a challenge to clinicians from other professions to sum up what your profession adds in 25 words or less (the first sentence in this definition below is fewer than 25 just sayin’).

“Occupational therapy is a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement. (WFOT 2012)“

In occupational therapy, occupations refer to the everyday activities that people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to and are expected to do.

In other words, although we may often be found dragging adaptive equipment around a hospital, our work is really about what people need and want to do – every day, and in every way.

One of the major impacts of pain for people is on their capability for doing, whether this is short-term, or becomes a long-term change.

How and what we do in daily life is influenced by individual values, the various contexts we interact with, temporal changes over the days and as we develop and mature, our culture and what helps us express who we are. The choices of what we wear, how we spend our work life, what we do for fun and leisure, how we communicate, how we navigate health systems, what we choose to eat and how we prepare it – all of these reflect our self concept. Occupational therapists focus on helping people resume or develop ways to do all of these things, so when someone develops pain that interferes with daily doing, it’s our job to help them do what matters in their life.

Something that many clinicians seem unaware of is that occupational therapy training covers both physical health and mental health (not that I think it’s possible to divide them!). As a profession we’re able to use (almost) any therapeutic approach that we can use to enable participating in a person’s occupations. We also employ occupations as therapies – such as dog walking for exercise, or blogging to develop executive functioning skills, or going to the mall for graded exposure to sensory input, or preparing an evening meal as part of applying pacing skills.

In fact, given that daily life is occupational therapy’s “domain of concern”, one way you could define the profession’s contribution to pain management and rehabilitation is to call us knowledge translators. Our job is to help people embed what can often be “theoretical” concepts developed in physiotherapy or psychology, into the daily life contexts of people being seen. It’s an occupational therapist’s work to help establish whether pacing, for example, can actually be used in a conveyer-belt process job. It’s an occupational therapist’s job to look at when and where and how a person can integrate their home exercise programme in light of all the other responsibilities a person has. It’s an occupational therapist’s joy to help someone discover the many ways a father can “be a good Dad” even in the presence of low back pain that means playing rough and tumble isn’t a good thing right now.

What’s the evidence for occupational therapy? Well, one way to consider this is to think about how we might study what are bespoke solutions tailored to suit an individual in his or her home/work/leisure context. I personally don’t think RCTs are the best strategy because those individually-tailored solutions don’t lend themselves to being applied in a recipe-like way. I know that people may change their expectations (and therefore their goals) as they move through pain management, so the end point shifts, making standardised outcome measures especially of function/disability not especially useful.

Another way we can think about this is whether the techniques/strategies themselves require further research to validate their usefulness. Given the enormous literature on, for example, exercise for chronic pain, the conclusion I’ve come to is that the form of exercise is less important than that it gets done. And in the case of ongoing pain, we know that movement practices will need to be done – yep, for life! This means they need variety (plenty of options), they need intrinsic motivation (the “why” is so important), they need to be embedded into a person’s routines (so they get done), and there needs to be room for future change. And all of these are within occupational therapy’s scope of practice.

When it comes to dealing with the demoralisation, stigma and perhaps even low mood and sense of loss of self that’s associated with pain, doing what matters at the right level of intensity, complexity and expression is intrinsically part of therapy. Psychological therapies such as ACT, CBT, EMDR, graded exposure, trauma management, mindfulness, relaxation training, effective communication – these are all bread and butter for occupational therapists – in the context of taking the person from the clinic office into their daily life. After all, the most effective way to find out what’s going through someone’s mind when they’re starting to do movements they’ve been worried about is to – oh yeah, do it in real time in the real world. Similarly, doing things that help people feel productive, capable, creative and “back to normal” are all part of occupational therapy’s remit.

Wondering about the training and competence? Some readers might be surprised that occupational therapy training is equivalent to physiotherapy, nursing, social work, and indeed any of the other allied health. Many occupational therapists hold occupational therapy master’s degrees, and there are a growing number of us with PhDs. We come from backgrounds including psychology, physiotherapy, nursing, teaching…What is most important, according to the OTBNZ, our NZ Regulatory Body, is that occupational therapists adhere to the requirements for competence. There are five broad areas, and every occupational therapist must undertake both supervision and maintain a Portfolio of ongoing learning and reflection. CPD “points” and “hours” are irrelevant: what matters is that occupational therapists reflect on what they learn and consider how it might influence their practice. Finally, in Aotearoa/New Zealand, our profession has embraced bicultural practice, and you’ll find occupational therapists equally at home calling themselves kaiwhakaora ngangahau. Whakaora means to restore to health and ngangahau is an adjective meaning – active, spirited, zealous. In choosing this translation, the Maori Language Commission is conveying the idea of reawakening, or restoring to health one’s activeness, spiritedness and zeal – occupational therapy.

My plea to clinicians working in pain management and rehabilitation is to take some time to listen to your occupational therapist colleagues. Understand where they’re coming from and why they offer what they do – and take up the challenge I made at the beginning of this post: sum up what you offer in 25 words or less.

Biopsychological pain management is not enough

I recently read a preprint of an editorial for Pain, the IASP journal. It was written by Prof Michael Nicholas, and the title reads “The biopsychosocial model of pain 40 years on: time for a reappraisal?” The paper outlines when and how pain became conceptualised within a biopsychosocial framework by the pioneers of interprofessional pain management: John Loeser (1982) and Gordon Waddell (1984). Nicholas points out the arguments against a biopsychosocial model with some people considering that despite it being a “holistic” framework, it often gets applied in a biomedical and psychological way. In other words, that biomedical concerns are prioritised, with the psychosocial factors relegated to second place and only after the biomedical treatments have not helped. Still others separate the relationships between “bio” “psycho” and “social” such that the interdependent nature of these factors is not recognisable.

Nicholas declares, too:

“… that cognitive behavioural therapy interventions that did not also include workplace modifications or service coordination components were not effective in helping workers with mental health conditions in RTW. That means, just like in the case of reducing time lost at school for children in pain, the treatment providers for adults in pain for whom RTW is a goal should liaise closely with the workplace. Unfortunately, as the studies from the systematic reviews examined earlier for a range of common pain therapies indicated, engaging with the workplace as part of the treatment seems to be rarely attempted.“

I find this confusing. In 1999 I completed my MSc thesis looking at this very thing: pain management combined with a focus on using pain management approaches in the workplace. The programme was called “WorkAbilities” and included visits to the workplace, liaison with employers and even job seeking for those who didn’t have a job to return to. The confusion for me lies in the fact that I’ve been doing pain rehabilitation within the workplace since the mid-1980’s – and that while today’s approach for people funded by ACC is separated from pain management (more is the pity), there are many clinicians actively working in pain rehabilitation in the context of returning to work here in New Zealand.

I’m further puzzled by the complete lack of inclusion by Nicholas of occupational therapy’s contribution to “the social” aspects of learning to live well with pain. This, despite the many studies showing occupational therapists are intimately connected with social context: the things people do in their daily lives, with the people and environmental contexts in which they do them. You see, occupational therapists do this routinely. We work with the person in their own environment and this includes home, work, leisure.

For those that remain unaware of what occupational therapists offer people with pain, I put it like this: Occupational therapists provide contextualised therapy, our work is in knowledge translation or generalising the things people learn in gyms, and in clinics, and helping people do these things in their life, their way.

An example might help.

Joe (not his real name) had a sore back, he’d had it for about three months and was seeing a physiotherapist and a psychologist funded by ACC (NZ’s national insurer). Not much was changing. He remained fearful of moving especially in his workplace where he was a heavy diesel mechanic and was under pressure from a newly promoted workshop manager to get things done quickly. Joe was sore and cranky, didn’t sleep well, and his partner was getting fed up. Joe’s problems were:

• guarding his lower back when moving
• fear he would further hurt his back if he lifted heavy things, or worked in a bent-over position, or the usual awkward positions diesel mechanics adopt
• avoiding said movements and positions, or doing them with gritted teeth and a lot of guarding
• poor sleep despite the sleep hygiene his psychologist had prescribed
• irritability
• thoroughly enjoying the gym-based exercise programme
• hating mindfulness and any of the CBT-based strategies the psychologist was offering him, because as he put it “I never did homework when I went to school, do you think I’m going to do it now? and this mindfulness thing doesn’t work!”

The occupational therapist visited Joe at home. She went through his daily routine and noticed that he didn’t spend any time on “fun” things or with his mates. His intimacy with his partner was scant because the medications he was on were making it hard for him to even get an erection, and his partner was scared he’d be hurt when they made love. Besides, she was fed up with all the time he had to spend going in to the gym after work when he wasn’t doing simple things around home, like mowing lawns, or helping with grocery shopping.

She went into his workplace and found it was a small four-person operation, with one workshop manager, two mechanics and one apprentice. The workshop was a health and safety hazard, messy and cramped, and open to the weather. The relationships between the team were strained with unpleasant digs at his failure to keep up the pace. The workshop manager said that he’d do his best to help Joe out – but in the end he needed to get the work out on time. The other mechanic, an old hand, meanwhile was telling Joe to suck it up and be a man, but also to watch out because Joe shouldn’t do as he’d done and shagged his back.

What did our erstwhile occupational therapist do? Absolutely nothing new that the physiotherapist and psychologist hadn’t taught Joe – but she worked out when, where and how Joe could USE the strategies they’d discussed in his life contexts. She went through the way he moved in the workshop and guided him to relax a little and find some new movement patterns to be able to do his work. She graded the challenges for him, and stayed with him as he experimented. She discussed alternating the tasks he did, interspersing tasks that involved bending forward with those where he could stand upright or even work above his head (in the pit). She discussed how he could use being fully present at various times during the day (mindfulness) to check in with his body and go for a brisk walk if he felt himself tensing up. She worked through communication strategies that they rehearsed and he implemented to let his manager know what he could – and could not – do.

They discussed his home life, and ways he could begin doing some of the household tasks he’d been avoiding, and she showed him how to go about this. They worked out the best time of day to do this – and to vary the exercise he did so that it wasn’t all about the gym. He started to walk over rough ground to get more confident for when he went fishing again, and he got himself a little stool to sit on from time to time. Joe and his occupational therapist talked about his relationship with his partner, and they met together with her so they could share what his back pain meant, the restrictions he had, what he could do, and how else they could be intimate. Joe was encouraged to rehearse and then tell his doctor about the effect of his meds on his sex life.

The minutiae of daily life, translating what is learned in a clinic to that person’s own world is, and always has been, the province of occupational therapy. It’s just a little sad that such a prominent researcher and author hasn’t included any of this in this editorial.

Just a small sample of research in which occupational therapists are involved in RTW.

Bardo, J., Asiello, J., & Sleight, A. (2022). Supporting Health for the Long Haul: a literature synthesis and proposed occupational therapy self-management virtual group intervention for return-to-work. World Federation of Occupational Therapists Bulletin, 1-10.

Berglund, E., Anderzén, I., Andersén, Å., Carlsson, L., Gustavsson, C., Wallman, T., & Lytsy, P. (2018). Multidisciplinary intervention and acceptance and commitment therapy for return-to-work and increased employability among patients with mental illness and/or chronic pain: a randomized controlled trial. International journal of environmental research and public health, 15(11), 2424.

Cullen K, Irvin E, Collie A, Clay F, Gensby U, Jennings P, Hogg-Johnson S, Kristman V, Laberge M, McKenzie D. Effectiveness of workplace interventions in return-to-work for musculoskeletal, pain-related and mental health conditions: an update of the evidence and messages for practitioners. J Occup Rehabil 2018;28:1–15.

Grant, M., Rees, S., Underwood, M. et al. Obstacles to returning to work with chronic pain: in-depth interviews with people who are off work due to chronic pain and employers. BMC Musculoskelet Disord 20, 486 (2019). https://doi.org/10.1186/s12891-019-2877-5

Fischer, M. R., Persson, E. B., Stålnacke, B. M., Schult, M. L., & Löfgren, M. (2019). Return to work after interdisciplinary pain rehabilitation: one-and two-year follow-up study based on the swedish quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 51(4), 281-289.

Fischer, M. R., Schults, M. L., Stålnacke, B. M., Ekholm, J., Persson, E. B., & Löfgren, M. (2020). Variability in patient characteristics and service provision of interdisciplinary pain rehabilitation: A study using? the Swedish national quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 52(11), 1-10.

Ibrahim, M.E., Weber, K., Courvoisier, D.S. et al. Recovering the capability to work among patients with chronic low Back pain after a four-week, multidisciplinary biopsychosocial rehabilitation program: 18-month follow-up study. BMC Musculoskelet Disord 20, 439 (2019). https://doi.org/10.1186/s12891-019-2831-6

Marom, B. S., Ratzon, N. Z., Carel, R. S., & Sharabi, M. (2019). Return-to-work barriers among manual workers after hand injuries: 1-year follow-up cohort study. Archives of physical medicine and rehabilitation, 100(3), 422-432.

Michel, C., Guêné, V., Michon, E., Roquelaure, Y., & Petit, A. (2018). Return to work after rehabilitation in chronic low back pain workers. Does the interprofessional collaboration work?. Journal of Interprofessional Care, 32(4), 521-524

Nicholas, M.K. (in press). The biopsychosocial model of pain 40 years on: time for a reappraisal? Pain.

The demise of practical pain management

Cast your mind back to the last time you decided to create a new habit. It might have been to eat more healthy food, to do daily mindfulness, to go for a walk each day. Something you chose, something you decided when, where and how you did it, something that you thought would be a great addition to your routine.

How did it go? How long did it take to become a habit you didn’t need to deliberately think about? How did you organise the rest of your life to create room for this new habit? What did other people say about you doing this?

While we all know a reasonable amount about motivation for change – importance and confidence being the two major drivers – and as clinicians most of us are in the business of helping people to make changes that we hope will become habitual, have you ever stopped to think about what we ask people with pain to do?

It’s not just “do some exercise”, it’s often “and some mindfulness”, and “you could probably eat more healthily”, and “organise your activities so you can pace them out” – and “take these medications at this and this time”, “attend these appointments”, “think about things differently”… the list continues.

Now, for a moment, cast your mind back to the last few research papers you read, maybe even a textbook of pain management, the most recent course you went on, the latest CPD.

Was there anything at all on how people with pain integrate all of these things into their life?

Lewis et al., (2019) reviewed inpatient pain management programmes over 5 decades. They found 104 studies spanning from 1970’s to 2010’s. Unsurprisingly the content, format and clinicians involved in these programmes has changed – but you might be surprised at some other changes… Lewis and colleagues found that physiotherapy (primarily exercise) remained at similar levels over time, but programmes gradually became less operant conditioning-based (ie behavioural reinforcement with a focus on changing behaviour) to become more cognitive behavioural (working with thoughts and beliefs, often without necessarily including real world behaviour change), with reduced emphasis on reducing medications and less family involvement. While the same numbers of physiotherapists, doctors and psychologists remain, nurses and occupational therapists are decreasingly involved.

What’s the problem with this? Isn’t this what the research tells us is “evidence-based”?

Let’s think for a moment about effect sizes in chronic pain. They’re small across all modalities when we look at outcomes across a group. There are some gaps in our understanding of what, and how, pain management programmes “work”. We know that movement is a good thing – but effect sizes are small. We don’t know how many people maintain their exercise programmes even six months after discharge. We also don’t know how well movements taught in a clinic transfer into daily life contexts, especially where fear and avoidance are being targeted. We don’t know who, if anyone, carries on using mindfulness, cognitive strategies such as thought reframing or reality testing, and we don’t know many people leave a programme thinking they’ve been told their pain is “in their head” (though, to be fair, this is something we’ve had problems with for at least the 30 years I’ve been doing this work!).

So while assessment might be more “holistic” and outcomes more likely to be about quality of life and disability, the minutiae of how people with persistent pain integrate and synthesise what they learn in pain management programmes into their own life contexts is invisible. It’s not even part of many pain management programmes.

We could turn to the qualitative literature for some insights. Mathias et al., (2014) interviewed people two weeks after completing a programme. Munday et al., (2021) selected people toward the end of a three week programme. Farr et al., (2021) talked to people up to 24 months after a programme – but in the context of a peer-led support group (which, by the way, I think are marvellous!), Penney et al., (2019) interviewed veterans to identify outcomes, barriers and facilitators to ongoing pain management – but don’t indicate how long after a programme their participants were interviewed. So we don’t know what pain management strategies “stick” and remain in use, integrated into daily life.

So many questions come up for me! Do pain questionnaires measure what matters to people? Can a 0 – 10 response on an item of the Pain Self Efficacy Questionnaire (Nicholas, 2007) represent how someone draws on, and uses, coping strategies to do what matters? Does a response on the 0 – 10 Pain Disability Index (Tait, Chibnall & Krause, 1990) adequately capture how a person does their daily life? If we help people “do exercise” but they don’t continue with these exercises once they resume their own life – what is the point? Why are family members not included any more? How does this fit with New Zealand’s Te Whare Tapa Whā model of health?

The problem/s?

The health profession that entirely focuses on helping people do what matters in their life (occupational therapists use occupation or daily doing as both therapy and outcome) has had trouble describing our contribution. We don’t, as a profession, fit well into a medical model of health. We focus almost exclusively on the “Function” and “Participation” parts of the ICF – and we focus on daily life contexts. Researching our contribution using RCTs is difficult because we offer unique solutions that help this person and their whanau in their own context, and no-one’s daily life looks the same as another’s. We are about meaning, expressing individuality and self concept through the way we do our lives. This doesn’t lend itself to a clinic-based practice, or a hospital, or a standardised treatment, or treatment algorithms. Our contribution has been eroded over time. Very few pain management programmes incorporate occupational therapy – most are physiotherapy + psychology. This is especially noticeable in NZs ACC community pain management programmes.

Pain management is often based on the assumption that if a person is told what to do, perhaps gets to do it in a clinic with a therapist, this is sufficient. And for some people, especially those who view themselves in the same way as therapists (ie, individual responsibility), and people with the psychological flexibility and internal resources to just do it, they may do quite well. BUT consider the people we know who don’t. People from different cultures, lower socio-economic living, neurodiverse, those with competing values, lack of confidence, lack of personal agency – these are the people who don’t do as well in all of our healthcare, and especially those programmes relying on “self-management”.

Programmes also assume that what is done in a clinic can readily transfer to daily life. Clinics are contained, often purpose-built, usually regulated, and have a therapist handy. People are there for the one purpose. Daily life, on the other hand, is highly variable, holds multiple competing demands, other people question what you’re doing and why, is quite chaotic and messy. And there is no therapist. How does a person decide what to do, when, how, and why?

Remember your challenges with developing one new habit. How you had to stake a claim in your own life to create space for this new activity. How you sometimes forgot. How a change in one part of your life undermined you doing this new thing. How this was only one change. Only one. And what do we ask people with pain to do? And we don’t even bother to find out what is still being done 12 months down the track.

Practical pain management is about helping someone work out how to organise their week so they can add in this new exercise programme that might help, alongside having time and energy to be a good Mum, pick the kids up from school, sort the washing, do the groceries, oh and the car needs a new warrant, and I need a new prescription for my meds.

It’s about working out the best time of day to do some mindfulness – when will it do the most good? when can I fit it in? how do I deal with my partner wanting to get out and start the day while I’m meditating?

It’s about communicating to my boss, my colleagues and my customers that I need to get up and walk around – and maybe say no to some new projects at the moment. Perhaps I need to be more assertive about my own needs. Perhaps I’m worried I’ll lose my job because I need to make these changes….

In the rush to streamline pain management to the bare bones, I wonder if we have forgotten who it is all about. He tangata, he tangata, he tangata – it is people, it is people, it is people. Let’s remember that coping strategies and exercise and all the psychological approaches need to be continued for months, and even years. And this means helping people work out what our suggestions look like in their own life. Let’s not omit the profession that puts people and what their daily life looks like as its reason for being.

Tait, R. C., Chibnall, J. T., & Krause, S. (1990). The pain disability index: psychometric properties. Pain, 40(2), 171-182.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Medicine, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Lewis, G. N., Bean, D., & Mowat, R. (2019, Sep). How Have Chronic Pain Management Programs Progressed? A Mapping Review. Pain Practice, 19(7), 767-784. https://doi.org/10.1111/papr.12805

Mathias, B., Parry-Jones, B., & Huws, J. C. (2014). Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis. Psychology & Health, 29(3), 279-296. https://doi.org/10.1080/08870446.2013.845667

Nicholas, M. K. (2007, Feb). The pain self-efficacy questionnaire: Taking pain into account. European Journal of Pain, 11(2), 153-163. https://doi.org/http://dx.doi.org/10.1016/j.ejpain.2005.12.008

Penney, L. S., & Haro, E. (2019). Qualitative evaluation of an interdisciplinary chronic pain intervention: outcomes and barriers and facilitators to ongoing pain management. Journal of Pain Research, 12, 865-878. https://doi.org/10.2147/JPR.S185652

Rehab fails: What goes wrong in pain rehabilitation (1)

Well obviously I’m not going to cover everything that goes wrong – and certainly not in one post! But inspired by some conversations I’ve had recently, I thought I’d discuss some of the common #fails we do in rehabilitation. Things that might explain why people with pain are thought to be “unmotivated” or “noncompliant” – because if the rehab doesn’t ‘work’ of course it’s the person with pain who’s at fault, right? So for today, here goes.

Starting at the wrong intensity

One of the main things that happens when someone’s in pain is to reduce overall activity level. Pain has been called “activity intolerance” and it’s common for people to stop doing. So naturally when a clinician is developing an activity or exercise programme, the aim is often to simply increase how much movement a person does in a day. So far, so good. Muscles and cardiovascular systems improve when we use them.

But guess what? There’s a person inside that body! And people have minds. Minds with opinions about everything and in particular, anything to do with doing. There’s often a “should” about how much movement or activity to do. This rule might be based on “pain is a sign of tissue damage” so anything that increases pain clearly “should not be done”. There may equally be a “should” about how much exercise this person used to do, or wants to do, and often mental comments about “what kind of a person does this amount of exercise.”

I’ve heard good clinicians say that their patients “have unrealistic goals” – this is probably because the person’s mind has an opinion about what he or she “should” be able to do!

What can good therapists do about this? Well, firstly to ignore the person who inhabits the body is plain wrong. Secondly, flashy gadgets like coloured tapes or special elastics or foam thingies probably won’t do much for the person’s opinionated mind except to temporarily distract — oooh! shiny!!

Something I might do would be to ask the person what level they think they can begin at – beginning where the person is at, and moving at his or her pace is a solid foundation for developing a relationship where experimenting with movement becomes about the person and his or her relationship with their body. I think one of the aims of movement rehabilitation is to help the person develop trust in their own body and how it moves, so enhancing playfulness and experimentation can be a good start.

I might ask the person “what shows up when we begin doing this set of movements/exercises”? By “showing up” I’m talking about thoughts, images, sensations in the body that pop into a person’s mind (minds are soooo opinionated!). We might need to guide the person to notice quick thoughts or images, to put words to emotions and feelings, and to get in touch with fleeting sensations in the body.

Some of the things I’ve heard people say include: “only weak losers would call this exercise”, “I used to be able to lift 40kg sacks of cement and now all I can move is this pathetic 5kg dumbbell”, “he wants me to do what?! I hate boring exercises”, “but what am I going to feel like tomorrow?”

What do we do with these thoughts?

First: make room for them to be present. Don’t quickly deny them “Oh of course you’re not weak”, “5kg isn’t pathetic”, “exercise is great fun”, “you’ll be fine, you can do this”. Saying these sorts of things dismisses the validity of the person’s fears and won’t win you any friends.

Second: empathic reflection. Indicate that you’ve heard what the person has said, validate that this is their experience, their thoughts. Something like “it’s a long way from what you used to lift, and that’s hard”, “it’s tough beginning to build up again”, “you’re worried that this is going to be unrewarding”, “you’ve had pain flare-ups before, and it’s hard to deal with”.

Third: Ask the person where they’d like to begin, put them in control of the intensity. Then ask them “how do you think that’s going to pan out” – in other words, will their option get them to where they want to be? What’s good about it? What’s not so good about it? from their perspective not yours! The idea is to establish how workable the person’s starting point might be. It might be perfectly fine, even if it’s not your choice!

Fourth: Affirm that the choice is the person’s – and that this is an experiment that will be reviewed at the next session. You might say something like “So you’d like to try doing 5 minutes of walking instead of the treadmill that I suggested, because you think this shouldn’t flare your pain up as much. What’s your choice now that we’ve talked about the good and not so good? We can review it next time.”

Fifth: Review how it went at the next session! Note down the rationale the person had for the level of intensity they chose, and then review how well that intensity worked from this perspective. For example “you wanted to do 5 minutes of walking because it wouldn’t flare you pain up as much, what did you notice? What showed up? How well did it work?” Notice all the open-ended questions, the reminder that the person thought this intensity wouldn’t flare their pain as much, and the focus on workability. Because at the beginning of a movement or exercise programme, what you’re looking for is adherence, sticking to the level of intensity chosen. Habits take time to make, and often adhering to a programme is because the opinionated mind is having a go at the person, interfering with their willingness to stick with it. If we avoid that roadblock, we have at least one point on the board.

Your opinionated mind might now be telling you that “oh they’ll never make progress at that pace”, “they’ll do themselves an injury if they lift that much”, “this is just pandering to their lack of motivation”

Be careful! At this point you could reflect on what’s showing up for you. Are you worried their outcomes will reflect badly on you? Do you only have a few sessions with the person and need them to get somewhere or you’ll have failed? Make room for those uncomfortable feelings. Let them be present and listen to what your opinionated mind is telling you. Maybe remind yourself that outcomes don’t depend on you – they depend on the person sticking to the programme, and a programme that doesn’t start because the person’s mind tells them it’s not worth it is a #rehabfail Remember also that you’re aiming for the person to gain confidence in their body, learn to listen to what happens when they try something out – the repeated progress reviews you do with the person are the actual active ingredients in therapy, they’re the bits that help the person to reflect on what works, and what doesn’t. That’s gold.

ps The technique I’ve described above is – gasp! – a psychological approach, based on ACT and motivational interviewing. You won’t find a specific study examining this approach in journals (at least not in a cursory search like I did!), but it’s an application of well-studied approaches into a movement or exercise context. It’s the same approach I use in contextually-relevant occupational therapy. Reading Bailey et al, 2020, affirms to me that we have a way to go to define and measure adherence, so I feel justified in using these strategies!

Bailey, D. L., Holden, M. A., Foster, N. E., Quicke, J. G., Haywood, K. L., & Bishop, A. (2020, Mar). Defining adherence to therapeutic exercise for musculoskeletal pain: a systematic review. Br J Sports Med, 54(6), 326-331. https://doi.org/10.1136/bjsports-2017-098742

Eynon, M., Foad, J., Downey, J., Bowmer, Y., & Mills, H. (2019). Assessing the psychosocial factors associated with adherence to exercise referral schemes: A systematic review. Scandinavian Journal of Medicine & Science in Sports, 29(5), 638-650. https://doi.org/10.1111/sms.13403

Levi, Y., Gottlieb, U., Shavit, R., & Springer, S. (2021). A matter of choice: Should students self-select exercise for their nonspecific chronic low back pain? A controlled study. Journal of American College Health, 1-7. https://doi.org/10.1080/07448481.2021.1960845