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 studies – great examples

It’s true that ‘unconventional’ studies of any kind don’t get published as readily as conventional RCTs even if those studies are under-powered, have errors in their construction and don’t tell us much of anything. Grrr. Publishing studies from my PhD has been fraught because I chose a form of grounded theory that doesn’t conform to the conventional constructivist or Straussian approach. What, then are we to do?

Two things strike me: first we always need to select a research method to give us the best answer to our research question, not something that will ‘get published’ easily. There are many research questions and RCTs simply don’t answer them all. A quantitative method doesn’t lend itself to ‘why’ questions and inevitably require assumptions about the factors thought to be relevant, the measurement strategy, the underlying theory explaining what’s going on. This doesn’t really help us when we have a new field of study to look at, where there is no clear theoretical explanation, where measures don’t measure what’s relevant. Hence drawing on different designs like mixed methods and qualitative approaches. From a pragmatic perspective, the numbers needed for an RCT are much greater than most clinicians can find unless they’re working in a large research setting (and have a bit of funding!). Nevertheless, ‘pilot’ studies using RCT methods do get published even when they don’t have huge explanatory power, partly because they’re familiar to the reviewers.

The second thing that strikes me is: we need to have good exemplars. These give us a template of sorts to learn how to conduct good research, how to communicate why a particular ‘unconventional’ method is the best way to answer the question, and how to write the results/findings in a way that is compelling.

I’ve written before about the failure of much research in human behaviour and experience to understand that ergodic theorum is violated in grouped statistics. This means we can deeply question the results as they apply to the person we see in the clinic. Ergodicity implies that all people in a group will ultimately follow the same trajectory, develop in the same way over the same time, respond to treatment in the same way and follow the same processes. But clinicians know that some people respond very quickly to a component in a programme, while others don’t.

I recently found this example from Tarko (2005) and cited in Lowie & Verspoor (2019)

OK, ’nuff said. Ergodicity matters.

Choosing the right research strategy begins with having a good research question, and most clinicians have a very good research question: what is the best treatment I can offer this person presenting in this way at this time? The follow-up question is: is this treatment helping? or… to be more precise, which component of my treatment/s are helping?

It’s this question that N=1 or single case experimental designs are intended to answer, and they do it very well.

Here are some great examples of published studies using intensive repeated measures – and we need more of these!

Lydon-Staley, D. M., Zurn, P., & Bassett, D. S. (2020). Within-person variability in curiosity during daily life and associations with well-being. Journal of Personality, 88(4), 625-641. https://doi.org/10.1111/jopy.12515

I included this one because it’s not about pain! And yet it sheds light on something important in pain management. Curiosity is about being intrigued by novel, unfamiliar situations. Curiosity doesn’t flourish when a person is anxious, but does when people are wanting to increase their knowledge and skills, and it’s associated with greater well-being. So it’s something clinicians might want to foster – especially for someone who has become afraid to rely on their body and body sensations. In this study, people were asked to complete a daily diary and do some internet browsing (yay! my favourite thing to do!). After some fairly complex statistical analysis (described in good detail in this paper), the results from 167 people who completed 21 days of daily diary measures and a one-off set of measures showed that being consistently curious is associated with feeling good – AND that doing physical movement practices might enhance curiosity via improving mood. Now that’s worth knowing.

Mun, C. J., Thummala, K., Davis, M. C., Karoly, P., Tennen, H., & Zautra, A. J. (2017). Predictors and social consequences of daily pain expectancy among adults with chronic pain. Pain, 158(7), 1224-1233. http://dx.doi.org/10.1097/j.pain.0000000000000903

Now this study is a big one – 231 people in study one, and 220 people in study two. Cutting to the chase, these researchers found that people who expected high pain in the evening experienced greater pain the next day, even when controlling for current pain intensity. The study also found that morning pain predicted next afternoon social enjoyment but not social stress. And what this means is…. clinicians need to promote joy/fun/positive affect, and to help people reduce their expectations that their pain will inevitably increase or ‘be bad’ – it’s anticipation that seems to influence pain intensity and avoidance. These study designs allow researchers to tease apart the factors contributing to experiences over time. We need more of them!

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

And from a large study to a much smaller one with – wait for it – 8 participants! That’s more like the numbers we see in clinic, right? This study examined whether it’s more fruitful to expose people to many activities they’ve previously avoided, or instead, to limit the number of activities each person was exposed to. This is SUCH an important component of therapy where people have avoided doing things that bother them because they anticipate either that their pain will go to untolerable levels (or interfere with other important things like sleep) or because they’re worried they’ll do harm to themselves. Why? Because doing things in one safe space is not life. We do lots of activities in lots of different spaces, and most of them are unpredictable and we don’t have a ‘safe person’ to rely on. It’s perhaps one of the reasons exercise carried out in a gym might not transfer into greater reductions in disability in daily life – and why involving occupational therapists in pain management as ‘knowledge translation experts’ is such a good thing.

Caneiro, J. P., Smith, A., Rabey, M., Moseley, G. L., & O’Sullivan, P. (2017). Process of Change in Pain-Related Fear: Clinical Insights From a Single Case Report of Persistent Back Pain Managed With Cognitive Functional Therapy. Journal of Orthopaedic & Sports Physical Therapy, 47(9), 637-651. https://doi.org/10.2519/jospt.2017.7371

Lucky last – a single case study exploring the process of change experienced by one person undergoing cognitive functional therapy. While recent meta-analyses suggest CFT is ‘no better’ than any other treatment for people with persistent pain, what meta-analyses can’t show is those for whom it’s highly effective. Why? Because individual responses don’t show up in meta-analyses, and the mean or even the confidence intervals don’t show those people who do extremely well – or those who don’t do well at all. And yet as clinicians, we deal with each individual.

Now I chose these four studies because they are all published in highly respected and ‘highly ranked’ journals. I don’t care a fig about the supposed rank of a journal, but there’s no doubt that getting into one of these journals requires research of a very good standard. And somehow these ones snuck through!

Am I suggesting that RCTs shouldn’t feature in research? No – but I do think a much more careful analysis of these is needed, so we can understand the golden question: what works for whom and when? And to answer these questions we need far more detailed analysis. Oh – and evidence-based healthcare has always been a synthesis of THREE elements – research yes, clinician’s experience AND the person’s preferences and values. ALL THREE not just ‘research’ and out of research, not just RCTs.

Lowie, W. M., & Verspoor, M. H. (2019). Individual Differences and the Ergodicity Problem. Language Learning, 69, 184-206. https://doi.org/10.1111/lang.12324

Tarko, V. (2005, December 29). What is ergodicity? Individual behavior and ensembles. Softpedia News. Retrieved from https://news.softpedia.com/news/ What-is-ergodicity-15686.shtml

What’s the relationship between pain intensity and functional limitations?

This question comes up from time to time as some commentators strive to “find the cause and fix the problem at all cost.” The argument is that if pain was gone, the person would simply return to their old life just as they were. And for what it’s worth, there’s certainly a relationship between pain intensity and disability, and pain intensity and distress – but it’s not simple.

One of the earliest papers I read when I was beginning my pain management career is one by Waddell, Main, Morris, Di Paola & Gray (1984). Gordon Waddell was an orthopaedic surgeon with an interest in low back pain – and an equal interest in what people do when they’re sore. In collaboration with Chris Main and others, he examined 200 people referred from family doctors for low back pain, and analysed psychological questionnaires administered to this same group. The process this team used to establish the results was rigorous by any standard, but especially rigorous at the time: they carried out pilot interviews and exams on 182 people, then carried out a further analysis of impairment and disability on a different group of 160 people, conducted this study with 200 people, and further cross-checked with a second group of 120 people.

What did the team find? Well, putting aside (for now*) the judgements about “inappropriate responses” to examinations and “magnified illness behaviour” they found that people who were highly distressed demonstrated more of these “inappropriate” and “magnified” behaviours. Makes sense to me as it did to Waddell and colleagues – their analysis was “They may develop as a largely unconscious and socially productive ‘cry for help’ but, unfortunately, in the absence of due help they may, in themselves, add to disability and become counterproductive.”** The table below (from p. 212 of this paper) shows that physical impairment was the most significant contributor to disability.

But hold on a minute! In the prestigious Volvo Award winning paper, Waddell (1987) then shows a wonderful graphic that encapsulates just how complicated this relationship is. In it, he shows that “objective physical impairment” (remember this is in back pain) has a correlation of just r=0.27 with pain, and r=0.54 with disability, while the relationship between pain and disability was only r=0.44.

In other words, if pain and disability were directly related, there would need to have a relationship of 1:1 between pain intensity and functional limitations. There is not – so “other things” intrude or influence the relationship between pain and disability. Again in this paper, Waddell shows that there is little difference in pain intensity between people who go and see a health professional for low back pain, and those who don’t (and seeking healthcare is a pain-related behaviour, or illness behaviour) – because what we do about pain depends a great deal on what we think is going on, and on what we think a health professional can do for us.

Now because these papers are old, they’ll likely be discounted so I dipped into the enormous literature on pain and disability. I thought I’d ask if having a successful surgery that removed pain led to a “return to normal.” A 2010 paper by Bade et al., found that in knee replacement surgery “Compared to healthy older adults, patients performed significantly worse at all times for all measures (P<.05), except for single-limb stance time at 6 months (P>.05). One month postoperatively, patients experienced significant losses from preoperative levels in all outcomes. Patients recovered to preoperative levels by 6 months postoperatively on all measures, except knee flexion range of motion, but still exhibited the same extent of limitation they did prior to surgery.” So that’s a study using boring old functional assessments and disability measures: what if the person was getting surgery so they could do something they enjoy, perhaps golf? Jackson et al., (2009) found that only 57% of golfers returned to golf after total knee arthroplasty, with 81% golfing as often, or more, than before their surgery – but only 14% walked the course after surgery. And these were keen golfers with no pain after their knee replacements!

Kovaks et al., (2004) also found that “Clinically relevant improvements in pain may lead to almost unnoticeable changes in disability and quality of life. Therefore, these variables should be assessed separately when evaluating the effect of any form of treatment for low back pain.” The two important tables showing how correlations changed over time are below. On day 1, a 10% increase in VAS (ie pain intensity) increases disability by only 3.3%, and quality of life by 2.65%. On day 15, a 10% increase in VAS increases disability by 4.99% and quality of life by 3.8%.

Now I’m not reporting a large number of studies because – well, there are a LOT of them. Suffice to say that while there is a relationship between pain intensity and disability, it is not straightforward, and simply reducing pain does not mean a person will return to what they love doing, even golf! I’ve chosen older studies because it’s kinda helpful to look at older research to show that these ideas are not new. This poor relationship between pain intensity and function is something we should know already. We should have been taught this in our training. So catch up with the literature please!!

The factors that influence disability are many, and they’re not just biological. They include fears (of reinjury, of pain flare-up), they include other peoples’ responses to them (advice from health professionals, workplace requirements, family responses). They are real and mean that even once there is an effective treatment for forms of persistent pain (and we’ll be waiting a while for these), rehabilitation from a whole person perspective is crucial. In fact, in the golfing study, all the physical measures (strength, ROM etc) were fine – so it’s not about physical fitness, nor about pain intensity, it is about people being people. So we also need to be people working with other people.

*We cannot detect malingering in people with pain because we have no objective measure of pain. Psychometric measures don’t measure malingering (see Tuck, N. L., Johnson, M. H., & Bean, D. J. (2019). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. Journal of Pain, 20(2), 133-145. https://doi.org/10.1016/j.jpain.2018.07.002), and neither can we.

**For what it’s worth, if anyone suggests the “Waddell signs” can demonstrate who is malingering – go read Waddell’s own words, where he states unequivocally that these are indications only of psychological distress.

Bade, M. J., Kohrt, W. M., & Stevens-Lapsley, J. E. (2010). Outcomes before and after total knee arthroplasty compared to healthy adults. Journal of Orthopaedic Sports Physical Therapy, 40(9), 559-567. https://doi.org/10.2519/jospt.2010.3317

Jackson, J. D., Smith, J., Shah, J. P., Wisniewski, S. J., & Dahm, D. L. (2009). Golf after total knee arthroplasty: do patients return to walking the course? American Journal of Sports Medicine, 37(11), 2201-2204. https://doi.org/10.1177/0363546509339009

Kovacs, F. M., Abraira, V., Zamora, J., Teresa Gil del Real, M., Llobera, J., Fernández, C., & Group, t. K.-A. P. (2004). Correlation Between Pain, Disability, and Quality of Life in Patients With Common Low Back Pain. Spine, 29(2), 206-210. https://doi.org/10.1097/01.Brs.0000107235.47465.08

Waddell, G., Main, C. J., Morris, E. W., Paola, M. D. I., & Gray, I. C. (1984). Chronic Low-Back Pain, Psychologic Distress, and Illness Behavior. Spine 9(2), 209-213.

Waddell, G. (1987). 1987 Volvo Award in Clinical Sciences: a new clinical model for the treatment of low-back pain. Spine, 12(7), 632-644.

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

Persistent pain and movement practices

Here I go, stepping into “the bio” to write about movement. Oh dear, what am I doing?

Movement practices of various kinds are part and parcel of pain management. In fact, to read some of the material in social media-land, exercise is the be-all and end-all of pain management, maybe with a dash of psychology. Can we please stop doing this?

I’ve said it often, for many forms of persistent pain, especially the most common forms – nonspecific chronic low back pain, fibromyalgia, and osteoarthritic pain – movement is a good thing, but the effect sizes are small for both pain intensity and disability (eg Jayden, et al., 2021). I’ve reproduced the author’s conclusions below:

We found moderate‐certainty evidence that exercise is probably effective for treatment of chronic low back pain compared to no treatment, usual care or placebo for pain. The observed treatment effect for the exercise compared to no treatment, usual care or placebo comparisons is small for functional limitations, not meeting our threshold for minimal clinically important difference. We also found exercise to have improved pain (low‐certainty evidence) and functional limitations outcomes (moderate‐certainty evidence) compared to other conservative treatments; however, these effects were small and not clinically important when considering all comparisons together. Subgroup analysis suggested that exercise treatment is probably more effective than advice or education alone, or electrotherapy, but with no differences observed for manual therapy treatments.

So for chronic low back pain, short-term pain intensity reduction is clinically significant, but neither functional limitations nor pain intensity reductions over the long-term reached clinical significance. Ouch! This means that we must not oversell the usefulness of exercise as a panacea for chronic pain.

Some missing bits in this meta-analysis: how many people carried on doing their exercise programmes? Why did they keep on going if they didn’t experience reduced pain or better function? How many people dropped out from follow-up?

But my biggest question is “Why does increased physical fitness and reduced pain not translate into better function in daily life?” And of course, my next question is “What might improve the daily life outcomes for people with pain?”

I might also ask why there is so much emphasis on exercise as an approach for chronic pain? Why oh why? One reason could be the assumptions made about the reasons people have trouble with daily life activities. A reasonable assumption might be that people are unfit. Another might be that people don’t have confidence to move. But if these assumptions were true, we’d see better results than this. Perhaps we need to be much more sophisticated and begin to explore what really does impact a person’s daily life activities? My plea therefore is that we cease doing RCTs comparing exercises of various forms to placebo, no treatment or usual care. Please. We know movement is a good thing, and with the enormous number of studies carried out, surely we can stop now?!*

Here are some clinical reasoning pointers when employing movement practices. I’m being agnostic with respect to what form of movement practice [insert your favourite here].

• Find out what the person enjoys doing for movement/exercise. Aim to do this, or build towards doing this. Start low and build up intensity, load and frequency.
• Find out why the person has stopped doing their movement/exercise practice. If pain has stopped them, be curious about what they think is going on, what they think the pain means, what happens if they experience pain doing their favourite movement practice, and find out how long and how much they’ve done before pain stops them. Then address unhelpful beliefs, re-set the starting point and progress in a gentle graded way.
• If the person hasn’t ever been a movement/exercise person, be curious about why. Explore this in detail – beliefs about movement, movement practices they’ve tried, time available, cost, all the things that might get in the way of doing a movement practice. You might find it was a high school physical ed. practice that totally put them off – but look beyond “exercise” or “sports” and remember that movement includes walking, dancing, gardening, playing with the dog, fishing, kayaking….

When you’re starting to generate a movement practice programme, for goodness sake ask the person when they’re going to find time to do it, and don’t make it too long! Explore when might be the most convenient time, and what might make it easy to do. Use low cost, low-tech practices. Find out what might get in the way of doing the movement practice, and do some problem-solving – anticipate what goes through a person’s mind and together, come up with counter-arguments or better, think of some really important values that might underpin the reason to do what is undoubtedly difficult for this person in their life.

Think about life-long habits and routines. How might this person explore options that could fit into their life as they get older? What might they do if the weather is bad, or they have an addition to the family? How many different movement practices can you and the person think of? And remember, if it’s OK for a person at a gym to do “leg day” one day, and “arm day” another, it’s perfectly fine for someone to do gardening one day, and go for a walk up the hill the next. Don’t be boring! Invite exploration and variety.

Work on translating the movement practices you and the person do in clinic into the daily life movements the person is having trouble doing. This might mean asking the person about their daily life and what’s most difficult for them to do right now. If it’s bending to load/unload the dishwasher, ask them what’s going on, what comes up for them when they do this? Is the problem about physical capability – or is it because it’s at the end of a long day at work, they’re tired and haven’t been sleeping and they’re worrying about how the pain in their back is going to affect their sleep tonight? If it’s the latter – guess what, physical exercise isn’t going to change this! So talk about what they can do to help with their sleep, or if that’s not your forte, talk to another team member (occupational therapist, psychologist) about what might help.

Note that as clinicians, we have no right to dictate what a person’s life looks like. This means we can’t judge a person for their choice of movement practice. We also can’t dictate how often or how intense their “workout” should be. It’s going to vary, depending on all the things this person in front of you values most. And we must respect this – don’t be judgemental, their values may be very different from yours, and this is perfectly OK. Just help them explore the good – and not so good – of their choices.

Finally, don’t be afraid to have fun with movement! Play a little. If disc golf is the person’s thing – go try it out! If jive dance is their thing, maybe it’s time you gave that a go. If they like hiking to a quiet spot to do a little bird photography, go with them and carry your own camera gear. If their life is so busy that movement practice gets squeezed out, work with them to find ways to get movement snacks into their day. Don’t be boring. And worry a little less about “prescribing” movement, and much more about experiencing your body as a living sensory being – get in the moment and enjoy what your body is able to do. That is really what we’re encouraging in movement practices for chronic pain.

*A couple of other guesses for why exercise gets seen as The Best Thing – it’s “cheap” in comparison with other options, people can do it reasonably easily after therapy, there are LOTS of physiotherapists and others who offer this, it appeals to our “simple” (but wrong) beliefs about pain, psychological approaches are more expensive (though don’t offer better outcomes), daily life occupational therapy approaches are really hard to conduct as RCTs….

Hayden JA, Ellis J, Ogilvie R, Malmivaara A, van Tulder MW. Exercise therapy for chronic low back pain. Cochrane Database of Systematic Reviews 2021, Issue 9. Art. No.: CD009790. DOI: 10.1002/14651858.CD009790.pub2. Accessed 18 December 2022.

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.

How much “pain ed” do people need? And what to do when someone is not convinced…

This post has been a long time coming. There’s no doubt that giving explanations about pain mechanisms is common, and that we’ve (health professionals) been doing it a looooong time. Yes, way back to the 1970’s! In the early 1980’s when I started working in this field it was already commonplace to offer people an explanation for chronic pain (and to explain why some pains are such pains, while others bother us less – even when they involve the same degree of nociceptive input). Of course, way back then we used Gate Control Theory (GCT) to explain the distinction between hurt and harm, to explore why attention and emotion matter, and to introduce the idea of counter-stimulation and TENS: suffice to say clinicians used these metaphors especially for people with persistent pain (Katz & Rosenbloom, 2015).

Then along came Moseley, Nicholas and Hodges (2004) with a nicely-designed RCT comparing “pain neurophysiology” education with “back anatomy and physiology” provided by “trained physical therapist educators.” The results of this study showed “Education about pain neurophysiology changes pain cognitions and physical performance but is insufficient by itself to obtain a change in perceived disability.” Somehow the lack of relationship between changes in pain cognitions and physical performance and perceived disability got lost in translation, but what happened next was an explosion of interest in the effects of providing explanations about pain mechanisms.

Today, the old adage “if you have a hammer, all you see are nails” seems to apply when it comes to “pain mechanism explanations.” Everyone gets an explanation, many of the explanations are exactly the same (sometimes down to the same book being used), and I wonder how people with pain feel about this. Like the way we feel at the end of Christmas Day feasting – noooooo! not another mouthful!

Recently I was asked “how much pain ed do people need?” and my first thought was “it depends.” That’s my answer to most things in pain! Suffice to say, I think we need sound clinical reasoning before we launch into any intervention, and this means we need to understand the rationale for giving someone a pain mechanisms explanation. This post attempts to shed some light on when it might be useful.

One reason given for “educating” people (please, no! “educating” someone sounds so like an info-dump, and focuses us on what WE do, rather than on the EFFECT this information is intended to have) – one reason is to reduce pain intensity. Education, however, doesn’t have an incredibly powerful action on my pain when I burn myself doing silversmithing. The effect of information on pain may be via appraisal: if I think my pain is not a direct measure of tissue damage, then I might not be as distressed by it (and indeed, this is one of the effects identified in the Moseley, et al., 2004 study – changes in the Survey of Pain Attitudes and the Pain Catastrophising Scale showing reduced catastrophising brought about by recognising that hurt isn’t equal to harm).

As a result of not being as distressed, a person doesn’t have to communicate their fear through a number on a 0 – 100mm VAS. Because remember, we don’t have a pure measure of pain intensity and the VAS is a communication device. Pain behaviour, or what we do about our pain, is at least partly about communicating to others (Hadjistavropoulos et al., 2011; Lackner & Gurtmann, 2004) – and we all know we’d never get prescribed analgesia in an Emergency Dept with 30mm pain on a 0 – 100mm VAS!

Similarly, if we’re not as afraid of what pain means, we’re less likely to be worried about moving – so I wasn’t at all surprised to see the changes in straight leg raising and other physical performance measures. I also wasn’t surprised to see no change to perceived disability because doing functional activities in the real world is a whole lot more scary than in a controlled, supervised clinical setting. Remember this, folks, when you’re prescribing movement practices: they do not directly transfer into confidence and performance in daily life!

So if giving an explanation is about reducing distress, maybe it’s also about reducing uncertainty. Zaman and colleagues (2021) found that uncertainty hasn’t been studied as much as I’d hope and worse, it’s often studied in experimental settings where there is certainty that the pain will end, and this in turn is quite unlike me and my fibromyalgia pain which is both unpredictable and not controllable. There’s no doubt that helping someone understand that their pain isn’t a dread disease (cancer, some weird inflammatory disease, a nasty neurological – oh wait, it IS a nasty neurological thing…!) will likely reduce their distress, and might even reduce uncertainty – because at least we know what it’s not! But uncertainty remains with persistent pain because no-one knows when/if it will end, often we don’t know why it gets set off, and we clearly don’t have a handle on why it goes on and flares.

It makes sense, then, to consider pain mechanism explanations when a person 1) is not sure what it all means, 2) worries that it’s something nasty, and 3) thinks it’s both a direct reflection of what has happened to their tissues and 4) that they personally can’t do much about it.

We might also think of giving someone some information about their pain if we want to help them understand why we might be trying something like mindfulness, relaxation, stress management, or even normal movement. We can employ the little we know about cortical processes and descending inhibition, and polyvagal theory and sympathethic arousal, as well as physiological responses to movement/exercise to explain the rationale for these interventions if we so choose.

BUT we don’t have to all the time. Why? Because we can do these things anyway and help the person explore their responses in vivo! This may be more powerful than giving any kind of ham-fisted explanation, whether it be a cookie cutter one, or a tailor-made metaphor.

A few posts ago, I wrote about McCracken and Scott’s (2022) paper exploring the potential problems of making sense. This showed that sense-making can impede a person’s readiness to engage in therapy if their desire to make sense means they reject explanations that don’t fit with their understanding or when they overthink what the explanations mean. In these instances, it makes much more sense for us (see what I did then?) to help them begin to do what matters in their life than continue looking for explanations.

My guidelines for working through “pain mechanisms”?

• If the person is a geek and likes to delve into learning about their body and responses – go for it! (ie, people like me :-))
• If the person asks for information, or has questions about specific aspects of their pain or treatment
• As part of generating a case formulation, where the person and you collaborate to develop a model of what’s going on for them. As a clinician you’ll be using guided discovery to work out the processes that occur in predictable patterns, and these patterns in turn can become the focus of where and how you might interrupt them.
• After asking the person for their understanding, and there’s something in their version that’s unhelpful for their progress. For example, if the person tells you that they think a scan will uncover “the real reason” for their pain, or if they’ve taken on board an unhelpful belief that their joints are grinding bone on bone… you know the sort of thing. After asking permission to explore these thoughts/beliefs, you might find it OK to offer an alternative – but if it’s not getting in the way of them engaging in therapy, then just go along with it and use guided discovery instead.

What to do instead of explaining mechanisms?

• Focus on helping the person move towards what matters in their life, even if it doesn’t always make sense to the person. Use their experiences to guide their understanding, it’s far more powerful than any kind of external “truth”.
• Use guided discovery, drawing from their own experiences and asking them to reflect on the effect of what they do and know on their experience. For example, ask the person what it’s like when they’ve been worrying about what’s going on in their OA knee, what do they notice about their overall stress level, what does that do to their pain, what effect might that worry have on sleep or fatigue and how this might influence their pain and doing what matters.
• Offer skills to help deal with uncertainty and worries such as mindfulness (but OMG not to reduce pain, puhleaze!), attention management, and cognitive defusion.
• Always draw a connection between what you explain and what this means clinically. For example, if you want to discuss nociplastic mechanisms, what this might mean is a tendency for “normal” injuries or tissue disruption pain to hang around a lot longer. It might also mean pain spreads out a bit more. It can help explain why many medications are ineffective. And it’s useful when another clinician has suggested that because “there’s nothing on your scan, therefore there’s nothing wrong.” But tread lightly because there is SO much we do not know!

I like to draw on the principles of motivational interviewing in my work with people. Respecting their autonomy and right to decide means I need to ask permission before I give information to them. I need to have a clear clinical reason for doing so – and this isn’t “because it reduces pain” – it needs to have specific indications for this person. Understanding how and why “pain education” can be helpful is critical, and always remembering that knowing “about” something doesn’t mean it changes behaviour. I’m still not keen on spiders even though I know we have no poisonous ones here in Aotearoa, and I’m much bigger than them!

Katz, J., & Rosenbloom, B. N. (2015). The golden anniversary of Melzack and Wall’s gate control theory of pain: Celebrating 50 years of pain research and management. Pain Research & Management: The Journal of the Canadian Pain Society, 20(6), 285-286.

Hadjistavropoulos, T., Craig, K. D., Duck, S., Cano, A., Goubert, L., Jackson, P. L., Mogil, J. S., Rainville, P., Sullivan, M. J., de C. Williams, A. C., Vervoort, T., & Fitzgerald, T. D. (2011). A Biopsychosocial Formulation of Pain Communication. Psychological Bulletin, 137(6), 910-939. https://doi.org/10.1037/a0023876

Lackner, J. M., & Gurtman, M. B. (2004). Pain catastrophizing and interpersonal problems: a circumplex analysis of the communal coping model. Pain, 110(3), 597-604. https://doi.org/10.1016/j.pain.2004.04.011

McCracken, L. M., & Scott, W. (2022). Potential Misfortunes in ‘Making Sense’: A Cross-sectional Study in People with Chronic Pain. J Pain. https://doi.org/10.1016/j.jpain.2022.09.008

Moseley, G. L., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. Clinical Journal of Pain, 20(5), 324-330.

Zaman, J., Van Oudenhove, L., & Vlaeyen, J. W. S. (2021). Uncertainty in a context of pain: disliked but also more painful? Pain, 162(4), 995-998. https://doi.org/10.1097/j.pain.0000000000002106

Frustration in the clinic

I’m prompted to write this post because it’s something I see in social media so often – a clinician gets frustrated. Things don’t work. The person getting treatment doesn’t respond in the way that was expected. The person doesn’t look like what the clinician usually sees. The evidence doesn’t fit with practice. All the things! So I thought today I’d write about emotions and thoughts that might turn up – and what might underlie those feelings. (For people living with pain – we also have frustration in the clinic. Things don’t work out. The therapist isn’t what we expected. I’ll write more about this soon!)

Emotions are a complex reaction pattern, involving experiential, behavioral and physiological elements (https://dictionary.apa.org/emotion). From a cognitive behavioural perspective, an event happens, we appraise it (judge it), and we experience an emotion – then we do something as a response. It’s much more complex than this, and each part interacts with the others – so we end up with a big diagram looking something like this: (from – https://www.researchgate.net/figure/Cognitive-behavioral-therapy-model-of-depression_fig1_338695579).

Instead of “depressive”, just put in “beliefs/expectations about who I am and what I can expect from myself”. This is a pretty generic model in CBT, and is well-established even if there are plenty of arguments about accuracy and adequacy!

Clinicians generally want to help. Yes, some are in it for fame or fortune (choose something else, kthx), but on the whole people enter a clinical profession because they think they can do some good, and people will “get better.” Our communities hold long-standing expectations about what seeing a health professional should entail: read Benedetti’s “The Patient’s Brain” for a much more detailed description of the historical and evolutionary basis for a therapeutic encounter.

Why does this matter? Because it sets the scene for how we think a therapeutic encounter should go.

Rules and assumptions about what “ought” to, or “should” happen often underlie emotions.

We’re happy when all the things line up and the patient does what we expect of patients while the clinician does things that work. When things don’t go to plan (ie our expectations are violated) that’s when we get some feelings, and they can be pretty big.

What do we expect from patients?

Despite moves towards person-centred care where patients are seen as people and clinicians offer options rather than dictate orders, our societies still hold expectations about the roles a patient and a clinician should play.

Patients are expected to seek help when they’re sick. They’re expected to be truthful about their symptoms, and tell clinicians everything that is relevant about their condition – AND about any other aspect of their health, even if it’s not immediately relevant to their current problem. Symptoms experienced by patients are expected to be what the clinician expects, and the disease a patient has should fit within “typical” parameters (usually based on males). Patients are also expected to follow instructions, not do things that go against instructions, and of course, to get better. Patients are meant to be grateful for their treatment, even if it’s disruptive, has unpleasant side effects, or isn’t 100% effective. Patients should do their best all the time.

As a corollary, clinicians have a huge number of expectations they take on (and are given!). Some of us have these explicitly handed to us during our training, while others find they’re an implicit set of assumptions that we adopt, perhaps in the guise of “being professional.”

What do we expect from clinicians?

Clinicians expect to be in control in the clinical encounter. We’re expected to know what to ask about, and from this, what to test for. We’re expected to have the answers, and be right. We’re also expected to be calm, caring and focused – even when our personal lives are topsy-turvy. We’re meant to know what the patient wants, and how to give that to them. We’re also expected to be up-to-date, do no harm, change our practice according to evidence (even when that evidence is contradictory, or just emerging), and to stay interested in our work even if we’ve been doing it for years.

We’re expected to know our scope of practice, but practice using a broad “whole person” framework even if we were never trained to do this. We think we should be compassionate and caring, even if we were selected for training on the basis of our academic prowess and not on emotional literacy. We must take on responsibility for outcomes, even though we’re not there to “make sure” the patient “does what they’re told” in their own time. We assume when we tell someone to do something, they’ll drop everything in their life to do it – because their health should matter most, and even when other things in their life matter more.

Clinicians can be expected to practice independently from the moment they qualify, and are either “right” or “wrong” and never shades of in between. Clinicians expect that if something goes wrong, and the person doesn’t get better, it’s either the person’s fault (they didn’t do what they should have done), or the clinician has done something wrong and made a wrong diagnosis, or chosen the wrong treatment (or the treatment was right but the intensity was wrong…. so just do it again). And clinicians shouldn’t ask for emotional help because that means they’re “too emotionally invested” or “not distanced enough.”

Expectations suck

We all have them. And the ones I’ve listed above, while not always present, often underpin the way we expect clinical encounters to go. Many of them are implicit, so we don’t even realise we hold them – until BAM! Something goes wrong.

When expectations are violated, we feel emotions and some of these can be pretty strong. Many are less strong, just little niggles, little irritations, a bit of cynicism, some disappointment, some frustration. And they go both ways: people seeking help, and people trying to help. Over time, violated expectations feel like your head hitting against a brick wall, or swimming against the tide, or just plain demoralisation or even burnout.

Ways through them

Some of us have professionally-endorsed support systems to help us. Occupational therapists and psychologists have mandatory clinical supervision with someone who is there for you, who supports your development as a clinician, who challenges your assumptions, who pokes and prods at your reactions, who encourages taking a broader view. Individual clinicians in other professions may also pick up on using supervision in this way.

Some of us don’t have that kind of support. So we seek it elsewhere – I suppose, in part, I started writing this blog those years ago to “find my tribe.” Social media is one way we get affirmation, validation and even (sometimes!) great ideas to help us shift our approach.

Some clinicians leave their profession, do something else that’s more lucrative and less emotional effort. Some move out of practice and into academia. Some use “outside work” interests to blow off steam, or give emotional space.

Some of us are a little fused with the assumptions we hold. It’s hard to create a little space around those assumptions, because they’re held so tightly (or they’re so deeply buried). When we do get a tap on the shoulder suggesting our beliefs are out of whack it can feel so terribly humiliating, so inherently WRONG that we shut off, or bite back.

Creating “wiggle room”

Slowing down is a good way to begin creating some space to feel what is showing up when we’re feeling frustration. This could be by taking one or two minutes at the end of a session to be present. Yes, a little mindfulness to notice what is present in the body. To be OK with being aware of emotions, thoughts, and body sensations. NOT TO CHANGE THEM! To simply be with them. (An explanation here: https://www.youtube.com/watch?v=v9NkUomOO_w). This helps in many ways, but it does not (and isn’t intended to) reduce them. It helps you notice that you’re having feelings. It helps you pay attention to your own state of mind. It can create a moment to ask yourself “I wonder why I feel this way?” It can help you be more present with the next person you see because you’re not carrying those feelings into the next encounter.

Reflective practice is another way to create some space to be human, feel things, be curious about why they happen, and check in with your own values. A great resource that’s freely available is Positive Professional practice: a strength-based reflective practice teaching model – it might be a ‘teaching’ model, but clinicians teach All The Time!

Taking small steps, making small changes

The first step towards making a change is knowing that it’s needed. And the second is knowing that it’s possible. The third? Knowing what to do. I hope these suggestions help a little in this seldom-discussed aspect of practice. My own preference is to question WHY do we hold these expectations? WHO made them a thing? WHAT purpose do they serve? WHEN might those expectations be a good thing – and when might they not? WHERE can we nudge just a little to make change? And preferably, as clinicians, I think it’s OUR job to make the adjustments because we’re not ill or sore or seeking help.

Some references:

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing Clinicians’ Well-Being and Patient-Centered Care Through Mindfulness. Journal of Continuing Education in Health Professions, 36(1), 11-16. https://doi.org/10.1097/CEH.0000000000000021

Huft, J. (2022). The History and Future of the Sociology of Therapy: a Review and a Research Agenda. The American Sociologist, 53(3), 437-464. https://doi.org/10.1007/s12108-022-09534-3

McGarry, J., Aubeeluck, A., & De Oliveira, D. (2019). Evaluation of an evidence-based model of safeguarding clinical supervision within one healthcare organization in the United Kingdom. International Journal of Evidence-Based Healthcare, 17 Suppl 1, S29-S31. https://doi.org/10.1097/XEB.0000000000000180

Spencer, K. L. (2018). Transforming Patient Compliance Research in an Era of Biomedicalization. Journal of Health and Social Behavior, 59(2), 170-184. https://doi.org/10.1177/0022146518756860

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.

Making sense: Does it help people with pain?

I love it when my biases are challenged (seriously, I do!). And in the study I’m talking about today, my biases are sorely challenged – but perhaps not as much as I initially thought.

Lance McCracken is one of my favourite researchers investigating processes of acceptance and living a good life in the presence of chronic pain. In this paper, he collaborates with a colleague currently involved in the INPUT pain management programme established at Guy’s and St Thomas’ NHS originally by Michael Nicholas who draws on a CBT model of pain management, and now more firmly in the third wave camp of ACT (Acceptance and Commitment Therapy). The paper is ‘Making sense’ and describes a cross-sectional study of sense-making by people with chronic pain attending the INPUT programme.

Making sense is something humans do without even thinking about it. Humans are prone to (and probably for good adaptive reasons) generate patterns out of random information. We gaze at shadows at night and think we see faces or intruders, and we look at clouds and see dragons and kittens. When we’re sore we also try to make sense of what’s going on – does this ouch feel like something I’ve had before? does it feel mysterious or can I carry on? have other people I know had this same ouch and what did they do?

In the search for making sense out of pain that otherwise seems random, clinicians have, since time immemorial, generated all sorts of stories about what might be going on. The wandering uterus. The evil spirit. The slipped disc. The leg length discrepancy. Clinicians, when faced with their own uncertainty about what exactly pain represents, can encourage patients to seek diagnosis: some sort of “explanation” for the problem. When that’s insufficient, more recently we’ve seen the flourishing of explanations for pain from a neurobiological perspective, particularly “pain as an expression of threat to bodily integrity”, a decision that is “made by the brain”.

My own research, investigating the experiences of people who indicated they live well with pain, reflected this same process. They sought a name for their experience, they wanted to understand the impact of pain on daily doing – those fluctuations and variances that emerge during the days and weeks early in the journey of learning that this pain isn’t going anywhere soon (Lennox Thompson, et al., 2019). Note that the group of people I recruited had come to the point where they identified that they were living well with pain – this group of people represent a small percentage of those who live with chronic pain, and not those who are seeking treatment.

OK, so what did McCracken and Scott (2022) find?

Bear in mind that this study was designed to measure the construct of sense-making in people seeking treatment for chronic pain. Also bear in mind the authors come from a perspective of functional contextualism, or a philosophy of science that argues for “…studying the current and historical context in which behavior evolves … to develop analytic concepts and rules that are useful for predicting and changing psychological events in a variety of settings.” What this means to me is that the form of whatever behaviour we’re observing/measuring matters less that the purpose or function of that behaviour in a specific context.

OK, on with the study.

451 adults attending an interprofessional pain management programme were participants in this study, and the measures were taken before they started treatment. They completed a battery of measures including ones measuring acceptance, cognitive fusion, committed action, tolerance of uncertainty, and pain measures such as the Brief Pain Inventory, numeric rating scale.

The research aim was to investigate a way to measure not only the positives from sense-making, but also the potential adverse effects of doing so. Concurrent with developing the measure, analyses of the inflexible ways we make sense were carried out in relation to outcomes: pain interference, depression and participation.

In the results (read through the analysis, BTW, it’s beautifully detailed), women were found to overthink compared with men, older people tended to want to avoid a sense of incoherence, and more educated people also tended to overthink.

Now, a little theory: coherence can be either literal or functional. Literal coherence is like “common sense” – so if I interpret my pain as meaning something is damaged, and moving it is bad, this is literal coherence. Functional coherence might occur when I realise that I hurt whether I’m doing things, or not, and I decide “this is how it is, I might as well get on with life”. In effect, as McCracken and Scott say, “these terms reflect the difference between language, thoughts and behavior fitting together consistently, (thoughts agree with other thoughts and behavior) versus behavior and goals in life fitting together consistently (behavior patterns succeed in reaching goals even when this seems to contradict “good sense”).

In daily life, people consistently prefer to solve problems and avoid insoluble problems. Makes sense, doesn’t it? Why try to deal with things that won’t change, even if we try hard to change them? BUT then we have insoluble problems that don’t make sense: the earthquakes in Christchurch New Zealand in 2011-2013 were random and we hadn’t had earthquake activity in our city for centuries – consequently we had many crackpots coming up with “predictions” for the next swarm of earthquakes based on phases of the moon or fracking or climate change. Anything to help people feel like they had a sense of control over something that did not make sense.

Chronic pain is often an equally insoluble problem. Many times pain like this does not make sense at all. No injury precipitated my fibromyalgia. There’s no imaging or biomarker for pain intensity. Existing biomedical diagnoses based on structural or biochemical or neurological processes don’t tell us much about who might get chronic pain, how intense it might be, or the impact of that pain on a person’s life. But clinicians and people with pain earnestly seek something, something to explain what’s going on.

For both clinicians and people living with pain, constantly searching for The Thing to explain pain can be exhausting, demoralising and linked to unhelpful patterns of behaviour. Clinicians might repeat the same treatment even though it didn’t work the first time. They might refer the person for more investigations, just in case something was missed. They might refer the person to another clinician, or, worse, they may attribute the pain to “mental illness” or “psychosocial factors”. Many, many clinicians think that giving a person a book about how pain might be constructed “in the brain” will be enough for people to make sense of what’s going on. People with pain might be afraid to get on with life in case they’re doing harm, or because they’re hoping the fix might be around the corner and life can “get back to normal”. They may spend enormous sums of money, time and emotion on treatments to either diagnose the problem, or treat it. They might spend hours brooding on what it could be. Their lives often stop – people with pain have called this “the endless limbo”.

Now there is a measure of sense-making I guess we’ll find out more about this part of learning to live with pain. The three subscales identified were “avoidance of incoherence”, “overthinking”, and “functional coherence”, though the last subscale had poor psychometric properties so wasn’t included in the final analyses.

My wish, however, is that rather than applying this measure to people attempting to make sense of something outside of their experience, we might develop a measure of how rigidly clinicians stick to “coherence” in the face of puzzling pain problems. Perhaps what might be even more influential, we might develop a measure of what happens when a vulnerable person trying to make sense of their pain meets a clinician with a high level of inflexibility about “what is going on”, because despite all the research we have into people living with pain, we haven’t yet recognised the power of the clinician in perpetuating unhelpful inflexibility.

Lance M McCracken , Whitney Scott , Potential Misfortunes in ‘Making Sense’: A Cross-sectional Study in People with Chronic Pain, Journal of Pain (2022), doi: https://doi.org/10.1016/j.jpain.2022.09.008

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195