Motivation

Why do people with pain report differently on questionnaires than they do in physical performance testing?


One of the topics thrown around by people who don’t have an up-to-date understanding of pain is why people say one thing on a questionnaire, for example, what they can and can’t do, and perform quite differently when asked to do the same task in a clinic. It’s a good question, on the face of it: after all, people should know what they can and can’t do, and be consistent. If there is a difference, well obviously the physical performance test is far more objective than self-report – the therapist is right there watching, so there’s no room for doubt about which measure is The Most Accurate.

The main reason, according to these clinicians, for someone doing differently in the clinic compared with self-reporting, has to be because they’re biased. The person wants to misrepresent what they can and can’t do. Of course.

Superficially, and if you’re not knowledgeable about pain, behaviour, context and human interaction, you could be forgiven for accepting the idea that what you see in clinic is consistent with what’s being done in every day life. The physical movements are pretty much the same and the person is just being asked to do something they do all the time.

BUT – and it’s an enormous exception – humans are not robots. Not body bits that move when they’re pulled like a puppet on a string. People are meaning making, interpreting, social creatures with rapidly responding body systems that represent contexts in relation to memories, predictions and current demands.

I wrote a talk recently on some research that made my heart sing a bit. As an occupational therapist, my profession has long recognised that doing activities (occupations) that hold meaning is quite a different thing from doing a-contextual, meaningless movements. This is why occupational therapists are known to ask about what matters to you, and to use meaningful activities/occupations both as therapy and as outcome (Hitch & Pepin, 2021). The research I referred to was a proposal for an “ecologically grounded functional practice” within rehabilitation (Vaz, Silva, Mancini, Carello & Kinsella-Shaw, 2017). In this paper, the authors point out that “improvements at one level of functioning might not transfer immediately to other levels” and by this they mean that elbow flexion/extension improvements may not transfer into a person being able to feed themselves. They also pointed out that when people perform well-rehearsed activities in the context of goal pursuit – such as getting dressed, ready for work; catching a ball as part of a fast-moving game of netball; hammering a nail – the movements are not just about motor control, they’re about goal-directed behaviour in a context with an interaction between the person, the environment, any tools, the purpose of the activity and so on.

For example, if I want to eat soup, I not only need to have sufficient elbow flexion/extension, I also need to know where the soup bowl is (tried eating soup while lying down?), the texture of the soup (is it thick, thin, lumpy?), the heat of the soup (hot, cold, spicy) and even the social context – I might be OK slurping when I’m on my own, but I’m less inclined to slurp when in polite company. The way in which I carry out the flexion/extension will be very different with each contextual variation.

OK. So context matters, and both the what and why of movement will influence how I go about my performance.
What else?

Well, with a painful condition and especially when I’m not confident I can do it without increasing my pain, I’m much more likely to attempt a difficult movement task in the presence of someone who can monitor what I’m doing. Firstly that person might stop me if they think I’m doing something harmful (professional liability insurance offers some protection!). Secondly, it’s a lot harder to say “no” to someone who is right there in the room! This is called “demand characteristics” and has been associated with problems of the rubber hand illusion (Lush, Vazier & Holcombe, 2020). If someone expects you to do something, you’ll probably do it – because we social creatures don’t like to offend, because the person may inadvertently signal the response they want (see link).

There are other reasons people don’t report the same level of disability on a questionnaire and in physical performance testing: they don’t measure the same things, people forget (especially if they haven’t tried in a while), the day of physical performance testing could be a bad day (or a good day), in physical performance testing the person is usually asked to do it maybe once or twice – in daily life that same activity might be carried out many times across a day, week, month. The environment in a clinical testing environment is typically well-lit, the space around the person is clear, the noise level is usually reasonably low, the floor surface is flat and usually hard lino and free of rugs or pets, there’s minimal distraction, the only thing the person has to think of is this one movement – they’re not picking up the washing off the floor while rushing to put it in the washing machine before dashing out the door to pick the kids up from school.

Even the questions are different – “does pain interfere with…?” is a different question from “can you step up onto this step using a hand rail?”

And don’t let me even start on the meaning of performance either way – for example, if the person is really keen on getting knee surgery, might “good” performance mean they, without even knowing it, alter how they do a movement? What if the person is apprehensive about how the results of this testing might affect their rehabilitation and return to work – again without even knowing it, might this not have some influence on how the person performs?

Testing and measurement is a core skill and research area in psychology. Dang, King & Inzlicht (2020) offer some really good insights into the reasons responses differ between self-report and performance, and to be fair, they don’t even consider the influence of pain and physical capability as I have above. Pain-related performance is a specialty area of its own, nonetheless we can still draw from their paper because many of the problems they recount are absolutely part of pain and disability self-report and physical performance.

They describe the reliability paradox (that reliability = variance between individuals divided by variance between individuals + error variance) – in other words, we need low levels of between-person variability so that any experimental manipulation is maximised. But in real life, we almost always exhibit variability in our performance – so the reliability of two measures limits the correlations that can be observed between then, with lower reliability leading to weaker observed correlations.

The authors also describe the very different response processes involved in self report and performance – as I mentioned above, self-report measures ask people to reflect on what they do in real life in many different contexts that are unstructured. Performance measures take a snapshot based on performance in specific and highly structured situations. Self-report measures capture a person’s perception of their capabilities whereas physical performance reflects the observations of someone else. And performance assessments generally tap into peak performance, not daily performance – tapping into some of the discrepancies we see between “can do” and “will do” (competence-performance discrepancy).

So, when you read arguments on social media from well-known physiotherapists suggesting that the person who reports a difference between what they perceive they can do, and what they have done in a physical performance test is “biased”: know that we have absolutely NO WAY to determine “bias”, “malingering”, “faking bad”, “faking good” – and that there are many well-understood reasons for the difference in performance. Read this paper for more on why we can’t detect “malingering” in people with pain: Tuck, N. L., Johnson, M. H., & Bean, D. J. (2019, Feb). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. J Pain, 20(2), 133-145. https://doi.org/10.1016/j.jpain.2018.07.002

Dang, J., King, K. M., & Inzlicht, M. (2020). Why are self-report and behavioral measures weakly correlated?. Trends in cognitive sciences, 24(4), 267-269.

Hitch, D & Pepin, G. (2021) Doing, being, becoming and belonging at the heart of occupational therapy: An analysis of theoretical ways of knowing, Scandinavian Journal of Occupational Therapy, 28:1, 13-25, DOI: 10.1080/11038128.2020.1726454

Lush, P., Vazire, S., & Holcombe, A. (2020). Demand characteristics confound the rubber hand illusion. Collabra: Psychology, 6(1).

https://methods.sagepub.com/reference/the-sage-encyclopedia-of-communication-research-methods/i4252.xml

Self-care


No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

Modifying pain behaviour (2)


Two concepts that receive limited attention in the allied health literature are nomothetic and idiographic approaches. I’m discussing these concepts here because when we’re considering pain behaviour, I think we can focus much more on “generic” (nomothetic) concepts than we do idiographic ones – and yet we say we’re about the unique person in front of us.

Firstly, this site offers a good summary of the difference between nomothetic and idiographic – click

Essentially, nomothetic approaches focus on underlying generalities, perhaps traits, and are a solid part of the science of measurement in psychology. Given that much of our allied health measurement practice is based on psychological theories (such as using aggregated or grouped data to search for differences in means between two groups), it’s not surprising that we’ve tended to reach for a self-report measure when we want to understand what a person thinks and does when they’re sore. Think of the Oxford Knee Score, or the Oswestry Disability Index, for examples!

Here’s an item from the Oswestry Disability Index (Fairbank, Couper, Davies et al, 1980)

Section 5 – Sitting
I can sit in any chair as long as I like.
I can sit in my favorite chair as long as I like.
Pain prevents me from sitting for more than 1 hour.
Pain prevents me from sitting for more than ½ hour.
Pain prevents me from sitting for more than 10
minutes.
Pain prevents me from sitting at all.

When a person reads these items, they’re asked to indicate the answer that best fits their experience, but left unanswered are these points: what time of day? what kind of chair? what is the person doing in the chair? who is around that person? why is the person sitting for a long time? what is it about the pain that stops the person from sitting? what do they think is going on?

While the measure itself is based on rigorous methodology, has excellent psychometric properties and so on – it doesn’t investigate important dimensions that we need as clinicians to help this person perhaps alter their sitting tolerance.

Alternative measurement approaches are available: item response theory is one (click) and multi-level modelling is another (click) – but the former still considers latent traits (ie can we identify a general underlying response that underlies all the variability we see in the data), and multi-level modelling also assumes that the respondents still belong to a general population who will demonstrate similarities around the variable in question.

The problem is that people don’t always follow the rules. Here’s an example:

A woman I saw once had low back pain, and was very afraid to bend forward. She was particularly worried about bending down in the shower to wash her lower legs, and when she saw me she avoided putting her handbag on the floor because this would mean she’d need to bend down to pick it up.

To get around this concern, she’d learned to sit on the floor of her shower to wash her lower legs, used pull-on shoes with elastic laces, or court shoes for work, and she’d put socks and pantihose on while sitting on the floor.

At the same time, she was comfortable sitting for around an hour, was able to stand as a customer service person for an eight hour day, and was happy driving – but not happy about reaching into the back of her car (it was a two-door) because it meant she was bending.

For this woman, her score on the Oswestry was below 20% or considered to be “minimal disability” – and yet she was almost turning herself inside out to be able to do what mattered to her.

An idiographic approach to her situations looks a little more deeply at the function of behaviour in context. If we take a look at the amount of spine flexion within her activities of daily living, we can see that sitting on the floor to wash her legs, and to pull shoes and socks on involves just as much movement as if she was bending down. What was different? Well, she was really afraid she’d slip in the shower and land in an undignified heap on the floor, needing to be rescued – while being naked! She said she’d been told that she shouldn’t bend because she had a disc prolapse and she’d seen one of those spine models with the bright red disc bulge and thought this was going to be much worse if she bent over. She was very concerned about appearances as she worked in a customer service role, so developing a way to still get dressed while avoiding bending forward was really important to her – but it took her much longer to do, much more effort to do it, and she remained quite certain that this red jelly would ooze from her disc if she bent forward.

In a behavioural approach to pain management, it’s important to understand the antecedents and consequences of a behaviour, so we can understand what elicits the behaviour, and what consequences occur to maintain it. In this woman’s case, any context where she might need to lean forward – such as making her bed, picking clothes up from the floor, putting shoes and socks on from standing, picking her handbag up, reaching into the back of her car to fetch something – elicited a thought (image) for her of her disc oozing out. Combined with her interpretation of the advice not to bend when she first sought help, her response was one of fear – and one thing we learn very early on as humans is that we should avoid things that generate fear.

The consequences of her avoiding forward flexion were many: her fears weren’t allayed except in the moment, and she remained highly concerned about the disc bulge; she felt relieved in the moment as she avoided doing the movements she thought would harm her. This is negative reinforcement – fear (negative experience) is reduced (withdrawn) because she avoided the movement (relief – I’ve avoided a disaster!). She also avoided doing many things she’d enjoyed – like playing tennis (bending down to pick up a ball? No way!), picking her clothes up from the floor (she had a home helper do this, and do her washing), she’d changed the shoes she wore to avoid having to bend down to tie laces, and she sat on the floor of her shower to avoid having to bend down to wash her legs.

When we started to work on helping her move on with life, it was really important to understand the unique combination of context and function of her strategies for avoiding bending. Just telling her that her discs wouldn’t bulge out wouldn’t alter those powerful images in her mind! We can’t unlearn an association once we’ve learned it. And she’d been practicing this association between an image of disc bulge oozing and bending – and all the activities where we bend, and all the associations she’d made between jelly wobbling (because the disc is basically jelly, right?), and all the other things she knew about jelly – it’s not strong, it can smear over things, it wobbles, it can melt…. My approach was to help her experience doing without the dire consequences, starting from simple and moving to more challenging over time. More on this next week!

As clinicians, our words matter, as do the images and models we have in our clinics. We also must be mindful that the people we try to help will bring their history and the unique associations they’ve made between things they’ve been told, metaphors they’ve heard and the values that matter to them. Respecting all those vitally important and idiosyncratic aspects of being human is integral to a behavioural approach to pain rehabilitation. Let’s not put people into algorithms or groups or boxes, because if we take the time to learn about their uniqueness we can create more powerful – and fun! approaches to helping them live their lives again.

Fairbank J, Couper J, Davies J, et al. The Oswestry low back pain questionnaire.
Physiotherapy 1980;66:271–3.

Is exercise the new snake oil? or just a dirty word?


If you haven’t heard about the health benefits of exercise in the last 10 years or longer, then you’ve probably been a hermit! Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants – or the amazing White Cross Electric Vibrator!

Well perhaps there’s a little more research supporting claims for exercise… but are those claims being inflated just a little? When it comes to pain, particularly persistent pain, perhaps so…

But before I launch into some of the problems with exercise research, I have another problem with “exercise” – and that’s the word itself.

According to Wikipedia (and no, it’s not an academic reference!!) “Exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness.” Winter and Fowler (2009) in an interesting paper looking at definitions of exercise, found that “exercise” and “physical activity” are essentially the same and differ only in terms of motivation/intent, finally arriving at this definition: “A potential disruption to homeostasis by muscle activity that is either exclusively or in combination, concentric, isometric or eccentric.” Whew! Glad we’ve got this sorted.

But given the sticky nature of our minds, and that very few of us are inclined to spend hours debating the technical details, the word “exercise” has picked up quite a few other meanings. For me it conjures up images of sweaty, lycra-clad blokes grunting in front of enormous mirrors while they heave on lumps of metal to the pumping rhythm of loud music (and the eyes that follow my every move). It also raises the spectre of school sports where I was inevitably the last person chosen for any sports team, the last to come in after every run, the person who got hit in the face by the ball, who got her thumb smacked by the hockey stick the week before my piano exams…

I’m not alone in my distaste for “exercise”. Qualitative researchers have often investigated how people with pain view exercise: “I get the comments that “It is not dangerous” and that “you are not going to be worse.” I do not believe it is dangerous … but actually it happens that I become worse after .… I know that the pain will increase. And they … talk to me about pain that is not like my pain.” (Karlsson, Gerdle, Takala, Andersson & Larsson, 2018)

Boutevillain, Dupeyron, Rouch, Riuchard & Coudeyre (2017) in another qualitative study, found that people with low back pain firstly identified that pain intensity interfered “any minimal physical activity, standing still in one spot, is torture” (line 1683); “if my back hurts, I don’t do any activity that’s for sure, I am not going to the garden and do some digging, that is out of the question! I have two children, if I am in pain and they want to play, my back hurts and I can’t play with them. My back hurts I can’t do it. It’s not that I don’t want to it is just that I cannot. I am unable to” (line 29). In turn, motivation for exercise was reduced “I don’t have any desire to exercise. A lack of motivation, even apprehension” (line 390); “there needs to be this spark to get motivated, and I just don’t have it” (line 1335). Along with the lack of perceived benefits for some: “Sometimes I try to exercise and then I’m in pain, looking back had I known it would hurt I would probably not have done it” (line 2037) “It can be harmful, I give you an example: I have a colleague with low back problems, similar to mine, and she loves to take step classes, but each time she exercises too much, she is in pain but continues. I think she should stop, it is quite dangerous for her” (line 378).

A systematic review by Slade, Patel, Underwood and Keating (2014) found that “Individuals were more likely to engage within programs that were fun and had variety than ones that were boring, unchallenging, or onerous because they disrupted daily activities.” They added that “Difficulties with exercise adherence and not seeing benefits of exercise were frequently attributed to lack of time and fit into daily life.” Quotes drawn from the studies included in this review show that lack of confidence, negative experiences at the time, and poor “fit” between the exercises selected and individual preferences influence whether exercise was carried out consistently.

At the same time as these negative views, many participants in qualitative studies report that they use “movement” as a key strategy for their daily management. Whether movement looked like “exercise” as prescribed by PTs or trainers is a little less clear – people use the word “exercise” to mean many different things, hence Karlsson and colleagues (2018) combined the term “physical activity and exercise”.

Now one very important point about exercise, and one that’s rarely mentioned, is how little exercise actually reduces pain – and disability. A systematic review of systematic reviews from the Cochrane collaboration found that most studies included people with mild-to-moderate pain (less than 30/100 on a VAS) but the results showed pain reduction of around 10mm on a 0 – 100mm scale. In terms of physical function, significant improvements were identified but these were small to moderate in size.

And let’s not talk about the quality of those studies! Sadly, methodological problems plague studies into exercise, particularly sample size. Most studies are quite small, which can lead to over-estimating the benefits, while biases associated with randomisation, blinding and attrition rate/drop-outs, adherence and adverse effects.

Before anyone starts getting crabby about this blog post, here are my key points (and why I’ve taken this topic on!):

  1. Over-stating the effects of exercise won’t win you friends. It creates an atmosphere where those who don’t obtain pain reduction can feel pretty badly about it. Let’s be honest that effects on pain reduction and disability are not all that wonderful. There are other reasons to move!
  2. Exercise and physical activity can be done in a myriad of wonderful ways, research studies use what’s measurable and controllable – but chasing a puppy at the beach, dancing the salsa, cycling to work, vacuuming the house, three hours of gardening and walking around the shopping mall are all movement opportunities up for grabs. Don’t resort to boring stuff! Get creative (need help with that? Talk to your occupational therapists!).
  3. The reasons for doing exercise are enormously variable. I move because I love the feeling of my body in rhythm with the music, the wrench of those weeds as they get ripped from my garden, the stretch of my stride as I walk across the park, the ridiculousness of my dog hurtling after a ball… And because I am a total fidget and always have been. Exercise might be “corrective”, to increase cardiovascular fitness, because it’s part of someone’s self-concept, to gain confidence for everyday activities, to beat a record or as part of being a good role model. Whatever the reason, tapping into that is more important than the form of the exercise.
  4. Without some carryover into daily life (unless the exercise is intrinsically pleasurable), exercise is a waste of time. So if you’re not enjoying the 3 sets of 10 you’ve been given (or you’ve prescribed to someone), think about how it might translate into everyday life. It might be time to change the narrative about movement away from repetitive, boring exercises “for the good of your heart/diabetes/back” and towards whatever larger, values-based orientation switches the “on” switch for this person. And if you’re the person – find some movement options that you like. Exercise snacks through the day. Jiggles to the music (boogie down). Gardening. Swimming. Flying a kite. Don’t be limited by what is the current fashion for lycra and sweaty people lifting heavy things with that loud music pumping in the background.

Boutevillain, L., Dupeyron, A., Rouch, C., Richard, E., & Coudeyre, E. (2017). Facilitators and barriers to physical activity in people with chronic low back pain: A qualitative study. PLoS One, 12(7), e0179826. doi: 10.1371/journal.pone.0179826

Edward M. Winter & Neil Fowler (2009) Exercise defined and quantified
according to the Système International d’Unités, Journal of Sports Sciences, 27:5, 447-460, DOI: 10.1080/02640410802658461

Geneen, L. J., Moore, R. A., Clarke, C., Martin, D., Colvin, L. A., & Smith, B. H. (2017). Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev, 4, CD011279. doi: 10.1002/14651858.CD011279.pub3

Karlsson, L., Gerdle, B., Takala, E. P., Andersson, G., & Larsson, B. (2018). Experiences and attitudes about physical activity and exercise in patients with chronic pain: a qualitative interview study. J Pain Res, 11, 133-144. doi: 10.2147/JPR.S149826

Big questions in pain rehabilitation


The last 30 years or more of pain research and management have been exciting for us pain nerds. We’ve learned so much about processes involved in nociception, about the psychology of our responses to nociceptive input, about treatments (that often don’t work terribly well), and we’ve discovered that we (mainly) don’t know what we don’t know. There are some big questions though, that have yet to be answered – and don’t yet share the limelight that neurobiological processes seem to hog. Here are a few of my big questions.

  1. How do we alter public health policy to move from an acute biomedical model to the broader and more adequate biopsychosocial understanding of illness, as opposed to disease? To expand on this – our current healthcare funding targets procedures, actions taken against “diseases” like an osteoarthritic knee that can be whipped out and replaced with a shiny new one. The person living with that knee doesn’t really feature because what matters is getting rid of a waiting list of people who want new knees. Government funding is allocated to ensure X number of knees are replaced with the unquestioned belief that this is the best way to deal with osteoarthritic knees. Rehabilitation, or the process of helping a person deal with the effect of a disease on their experience (ie illness), is, by comparison, poorly funded, and the outcomes rather more uncertain and complex. It’s hard to count outcomes that include quality of life and participation in the community. Health managers and policy funders find it slippery and complicated – and because a biomedical model is so much easier to understand, and so much simpler to measure, and those awkward “people” factors don’t need to be accommodated – funding seems to be allocated to procedures rather than outcomes. (see Wade & Halligan (2017) for a much more eloquent discussion of these issues).
  2. When, and how, do we tell someone their pain may be persistent? I’ve scoured the research databases several times over the years, to understand what research has been conducted in the crucial art of communicating to a patient that their pain is either not going to go away, or that it will take a long time before it does. While there is a little research into “giving bad news” this is primarily in the context of telling someone they have a “life-limiting disease”, ie they’re going to die. But nothing, not a single thing, on when we should advise someone, what we should say, what we should do to best help someone deal with the existential impact this kind of message has. In fact, when I’ve raised this question before, people on social media have advised me that if we tell someone their pain is persistent we’re reducing the possibility of recovery – developing an expectation in the person that their pain won’t go, and this will be a self-fulfilling prophecy. I’m not entirely sure that this is true: that suggests our minds can perpetuate pain, when my understanding is that our beliefs and expectations might influence behaviour rather more. And, putting myself in the shoes of many of the people I’ve seen who live with persistent pain, what is it like to be repeatedly told “we have the answer for you, if you’ll just do…[fill in the gaps]” only to find that it has not helped. How demoralising is that? How heartbreaking? And until we have a treatment with a 100% success rate, we will always have to acknowledge that some people will need to live with their pain for the rest of their years. It’s like a dirty little secret: don’t tell people or — and to be honest, I do not know what might happen! (I couldn’t locate a single paper on how to communicate a chronic pain diagnosis – if anyone has found something, please let me know!)
  3. How do we handle those clinicians who firmly believe that psychosocial factors are either irrelevant, or are equivalent to psychopathology? How do we help those people understand that describing someone’s cognitive approach to their situation as “catastrophising” does not negate or trivialise their distress? Neither does it mean we are “judging” the person. It simply recognises an association between one way of interpreting an experience – and outcomes that are not positive for the person. Clinicians who work with people who tend to “think the worst” do their best to understand how someone has developed this understanding of their situation, then offer new information, skills and support to help that person feel more confident and less hopeless. A clinician who simply offers sympathy may feel heroic and kind, but might be cementing disability and distress into place. And those who believe that the only factors that need addressing are depression or anxiety – and that’s not their scope of practice – probably could do with some more education about how humans interact, and the “social” aspects of the biopsychosocial approach.
  4. How do we appraise treatments that might help in the short term, but have unintended consequences? Particularly unintended consequences that occur over time and in areas unrelated to the original treatment. Here’s an example: when someone is offered an injection procedure that reduces pain, yes pain reduces. Yay! This might provide a “window” of opportunity for rehabilitation, return to work, and return to “normal”. And certainly this seems to occur. BUT what happens as the pain returns? If we offer a further procedure, what is the psychological effect of relief on future treatment seeking? Having worked in a pain management service where three-monthly injection procedures were offered, I can say that a core group of people will phone up as soon as their pain returns, and ask for another procedure. If it’s nearly 3 months since the last one, the person gets booked in. Another procedure, another few months go by. This time, it’s 2 months when the person begins to notice pain. Another phone call to ask for another procedure and the person gets booked in – 2 1/2 months since the previous one. Yay! Pain reduces, person goes on… this time six weeks after the procedure the person recognises that the pain is coming back…. phones up and asks for a procedure. This time the person is told “no, you need to wait”. They’re distressed. They’re anxiously waiting, waiting. They see their GP, maybe get some medications. They begin sleeping poorly. Eventually they get another procedure – and oh! the relief! But the experience of distress then relief from a procedure is an incredible learning opportunity. Guess how long before the person comes back for another procedure? And while they’re waiting for it, they’re distressed, not sleeping, disabled – and not ready to “do rehab” because they KNOW there’s a treatment that will “take it all away”. The problems are many, but two strike me: (1) repeated procedures mean those patients can’t be discharged, they remain patients as long as they continue to get the treatments and this eventually takes up so much time and space that fewer new patients can be accepted, and (2) treatments like cortisone injections can only be offered three or so times. What has the person been trained to do when they experience pain? That’s right – seek another procedure. And when this isn’t available, the person has learned to feel anxious about their pain, and to believe there’s little they can do about it themselves. I think this is cruel.
  5. Finally, how do we move from a clinical model where clinicians believe they have the answer, to a model where we appreciate that the person with pain is the one doing the work in all the hours they’re not with us? Maybe the way we do our treatments might shift from doing things to a person, or telling the person what to do (and expecting that they’ll do it just because we said) to being a coach, a facilitator, a cheerleader, a navigator – someone who is willing to work with rather than do to. And when will our funding models and service delivery models shift from valuing procedures (and therefore paying these people more) to valuing interactions (and therefore paying these people more) – and move away from trying to substitute person-to-person interaction with technology? Our communication capabilities need to be highly refined, highly skilled, incredibly nuanced and selective and flexible, and yet the skill to wield a technique (read – scalpel, manipulation, needle, bathboard – the “what” we do) is valued far more, and trained far more intensively than our communication skills. Unless, of course, we’re psychologists. But we use effective communication all the time – and we need to get better at it so we can more effectively help the person in front of us, who will ultimately have a choice about what they do. When will we be comfortable with recognising just how crucial the so-called “soft skills” of empathy, reflective listening, goal-setting, encouraging, challenging, responding to distress – when will these be funded adequately and when will we realise we ALL use these, not just psychologists.

Big questions, uncertain and complex answers. Can we have meaningful conversations about these without research? And yet these questions are hard to study. But isn’t it time to?

Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: a model whose time has come. Clinical Rehabilitation, 31(8), 995–1004. https://doi.org/10.1177/0269215517709890

On the problem of coping


Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

The confidence that you’ll succeed if you try…


Self efficacy. It’s a word bandied about a lot in pain management, and for a group of clinicians in NZ, it’s been a shock to find out that – oh no! They’re not supporting self efficacy with their patients very much! It means “confidence that if I do this under these conditions, I’ll be successful”.

Self efficacy is part of Bandura’s social learning theory (click here for the Wikipedia entry) where he proposed that much of psychological treatment is driven by a common underlying mechanism: to create and strengthen expectations of personal effectiveness. Bandura recognised that we don’t always have to personally experiment through trial and error in order to learn. Self efficacy expectations were thought to develop from personal experience (let me do, and I’ll learn how); watching other people try (show me, and I’ll see if you succeed, then I’ll copy you); verbal persuasion that aims to convince that you have the capabilities to manage successfully (encourage me, let me know I can, and I’ll try); and how physiologically aroused or alert you are (if I feel confident inside, I’ll try but if I feel anxious or stressed I’m less inclined to) (Bandura, 1977).

Bandura and colleagues established that “different treatment approaches alter expectations of personal efficacy, and the more dependable the source of efficacy information, the greater are the changes in self-efficacy.” (Bandura & Adams, 1977, p. 288). The conclusions drawn from this mean that treatments where people DO and succeed are more effective at enhancing their belief in self efficacy, while watching others, or being told how to do something are far weaker at building this effect.

Bandura began working on this theory while pondering how psychological treatments, particularly for systematic desensitisation or graded exposure, generated their effects. Systematic desensitisation aimed to reduce arousal levels and thus avoidance while being in a relaxed state – therefore the person is exposed to increasingly “aversive” stimuli (stimuli you want to avoid) while remaining calm and relaxed. Bandura thought that there were other factors involved in avoidance behaviour, developing his theory that expectations of negative consequences alone can generate fear and defensive behaviour and that this isn’t necessarily reflected in autonomic arousal and actions. Bandura hypothesised that reducing physiological arousal improved performance not by eliminating a drive to escape – but instead by increasing the confidence that the person can successfully manage the situation.

For parents, the idea that if you believe you can do what you set out to do, is embodied in the little book “The Little Engine That Could” (Piper, 1930/1989). Remember? The little engine that couldn’t because all the bigger engines said so, but then tried and tried and believed he could – and he did!

So, what does this have to do with pain management?

Let’s paint a scenario. Allan comes to see a hands-on therapist because he has a sore back. He believes that hands-on therapy is the thing, because others have said it’s really good. He goes, gets his treatment and wow! Things improve! The next time he has a sore back (because, you know, it almost always comes back) what does he do? Well, on the basis of his past experience, he heads to his hands-on therapist, because he’s confident this will help his pain. The problem is, his therapist has moved town. He’s a bit stuck now because in his town there are not many therapists doing this particular kind of treatment – what does he do? He doesn’t believe that anyone else can help, and he has no belief that he can manage by himself. He has little self efficacy for managing his own back pain.

Self efficacy is not about whether a person can do certain movements, it’s about believing that the person can organise skills to achieve goals within a changing context – not just what I will do, under duress, but what I can do, what I’m capable of doing, and what I say I’ll probably do.

Self efficacy is not a belief that a specific behaviour will lead to a certain outcome in a certain situation, it’s the belief that I can perform that behaviour to produce the outcome.

So, self efficacy isn’t a generalised attitude – it’s a specific belief about certain actions, certain outcomes in certain situations. It’s not a personality trait like hardiness, or resilience, or general confidence or self-esteem, it’s about being confident that I can generate a solution to a problem in a particular part of my life.

The times when we’re least confident are often when we’re facing a new experience, or we’ve had a bad experience previously. Particularly if we’ve seen other people fail at the same thing, or succeed but do so with much fear and loathing. In the case of pain, there are ample opportunities to have a bad experience in the past, and to learn from other people around us that – oooh back pain is something to be afraid of, and you can’t manage it alone – you need to get help from someone else. Consequently, many people have very low self efficacy for successfully dealing with a bout of low back pain.

And health professionals: we can foster this.

How? By implying that success is due to what we do, rather than being a natural process of recovery. By suggesting it’s something about our “magic hands” or pills, or injections or surgery or special exercises, or “using the core correctly”. In doing so, we’re generating a belief that the person cannot manage alone. That it’s not what the person does, but the magic hands, pills, injections, surgery, special exercises or using the core…

Damush, Kroenke, Bair, Wu, Tu, Krebs and Poleshuck (2016) found that self management approaches to pain increase self efficacy, self management actions, and reduced pain intensity and depression in a group of community patients with chronic musculoskeletal pain and depression. A typically tough group to work with because confidence to succeed at anything is pretty low in depression. Self management aims to ensure the credit for recovery lies with the person doing things that help – creating and supporting a belief that the person has the capability to successfully manage their situation. The techniques? Simple strengthening and stretching exercises, progressive muscle relaxation, and visualisation, in a group setting. Strategies that typically don’t need technology, but do provide support. Information about the natural history of recovery was included – so people were given realistic and optimistic information about their recovery, whether it meant pain reduction, or not. The usual goal setting, problem-solving, and positive self talk were encouraged, and people set goals each week to achieve – maybe based on something from the session, or something the person wanted to do for themselves.

This is not a high-tech approach. This is simple, straightforward pain management as it has been done for years (right back as far as the mid-1970’s and Sternberg!). And through it, these people become increasingly confident that they could successfully manage their own mood and pain independently. As a business model it’s probably not the best for repeat business – but oh how good for those participants who could go away and live their lives without having to think of themselves as patients.

More on self efficacy in the next couple of weeks – we can help people to become confident that they can succeed at managing their pain if it should happen again.

 

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review,  84, 191-215.

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Damush, T., Kroenke, K., Bair, M., Wu, J., Tu, W., Krebs, E., & Poleshuck, E. (2016). Pain self‐management training increases self‐efficacy, self‐management behaviours and pain and depression outcomes. European Journal of Pain, 20(7), 1070-1078.

Maddux, J. E. (2016). Self-efficacy Interpersonal and intrapersonal expectancies (pp. 55-60): Routledge.

Exercise? Who me? Yoga or physiotherapy or education…


Exercise, while one of The Most Important self management approaches for persistent pain, is not an easy sell to someone who is experiencing pain. Especially not if that exercise looks like huffing and puffing, hauling on bits of metal in a gym, or wearing lycra. Not to mention the “sports drinks”…  Those things aside, exercising is a good thing. You heard it from me, and I have declared my body an exercise free zone! The thing is, what kind of exercise, for what purpose, and how to get introduced to it.

Personally I’m a fan of exercise that achieves something else other than “getting fit”. I like gardening, I love dancing, I enjoy cycling (especially to the store to get a GREAT coffee!). Walking the dog is fun. Swimming (especially snorkeling) is awesome! I like my exercise to do more than bring on the endorphins, especially as I don’t get much of that post-exertional analgesia that many people do – and believe me, they do (Ellinson, Stegner, Schwabacher, Koltyn & Cook, 2016). I like my exercise to look like the things I need or want to do, so that when I need to do ’em, I’m in fit state to get on and do ’em.

So what kind of exercise works best? One sage told me “the exercise the person does!” and there is some truth to that, so when I begin talking to someone about exercise, I’m looking for something they can do regularly, that fits into their lifestyle, that makes them feel good, and has some other benefit to them. That benefit might be the social thing – going to a box-fit class with a group of others all bent on getting their fix of play-fighting. It might be the solitary thing – long walks along the beach with the dog for company. It might be the music – in my case, it’s belly dance (and I dare anyone to do a 5 minute shimmy drill while keeping an isolated upper body, a loose shimmy and smile!).

I like the idea of having variety – who says we need to do the same kind of exercise every day? So it’s a wet day and I don’t fancy taking my bike out in the rain, I can turn to my dance practice, or do the dusting, or vacuum the floors. It’s a frosty day and I can go for a brisk walk and take photographs of gorgeous sparkly frosty droplets while Sheba-the-wonderdog huffs steam and sniffs at the local scents. If it’s a warm day, why not head to the pool for a lap or two? If it’s a busy day and I don’t have time, what about some “exercise snacks”? Five minutes of exercise every 25 minutes adds some pretty quickly, so it’s lunges and chair dips and wall presses and shimmy practice in between writing.

Over time we’re seeing more research looking particularly at yoga for persistent pain of all kinds. Yoga comes in many different forms, and in this case I’m guessing the more extreme forms of hot yoga and contortion is not being studied. Some of the studies are appearing in rather eminent journals, like this one from the Annals of Internal Medicine and authored by a very large team including Saper, Lemaster, Delitto and colleagues (2017).

This study is a “non-inferiority” study, looking to establish whether yoga or physiotherapy, or indeed education, can help people living with chronic low back pain. Now I’m not going to do a blow-by-blow analysis of the study, that’s for you to do. What I am going to do is look at what the yoga consisted of – and see why, perhaps, yoga is getting so much research interest. BTW, yoga was found to be non-inferior to physiotherapy, and both yoga and PT were more likely than education to have a clinically meaningful response, although neither yoga nor PT were superior to education.

This is the basic format of the yoga class: Each class began with relaxation and meditation exercises, yoga breathing, and yoga philosophy. It continued with yoga poses and
concluded with relaxation. Pose variations and aids (such as chair, strap, and blocks) accommodated various abilities. Thirty minutes of daily home practice, facilitated by a DVD, a manual, and take-home yoga supplies, was strongly encouraged.

Yoga appeals to many because it seems to begin where people are at – it’s not huffy-puffy, things don’t jiggle, and generally the classes begin and end with the ritual of breathing and meditation. I like the idea of yoga (and yes, I’ve done a class or two!), because it doesn’t involve a lot of gadgets, you can do it alone or in a group, and it feels good. What I don’t like about yoga is the need to get effective and consistent feedback about how well you’re performing the poses, especially in the beginning, which means it can be difficult to do on your own without a teacher.

For people who find exercising both difficult and painful, yoga is a good place to start. I think attending classes is crucial (or at least having an instructor and a mirror!). Learning to use the meditation and breathing is integral to the exercise – and it’s this that I think makes yoga an effective addition to the exercise toolkit. What I’m less sure of is whether it’s better than any other form of exercise – or, in my case, the many different types of movements that I use in my weekly routine. And there’s the rub. As an occupational therapist, exercise is something people choose to do as a form of occupation (valued and meaningful activity). I also enjoy a bunch of other movement-based occupations, and to me these are as valid as yoga or the PT exercises included in this study. What my approach lacks, however, is a researched basis for it.

But here’s the thing: to date the research supporting exercise for people with persistent pain shows modest effects. And those effects are completely lost if the person doesn’t do the exercise. So why not have a wide range of whole-body movement practices to draw on, allowing the person to pick and choose and get out and do something every day, even if it doesn’t fit with our modern notions of what exercise should be?

 

 

Ellingson, L. D., Stegner, A. J., Schwabacher, I. J., Koltyn, K. F., & Cook, D. B. (2016). Exercise Strengthens Central Nervous System Modulation of Pain in Fibromyalgia. Brain Sciences, 6(1), 8. http://doi.org/10.3390/brainsci6010008

Saper, R. B., Lemaster, C., Delitto, A., & et al. (2017). Yoga, physical therapy, or education for chronic low back pain: A randomized noninferiority trial. Annals of Internal Medicine. doi:10.7326/M16-2579

Deconditioning? Or just not doing things any more?


For years there has been a general wisdom that people with chronic pain who gradually stop doing things “must” be deconditioned. That is, they must lose fitness, cardiovascular and musculoskeletal, and this is often used to explain low activity levels, high disability and the prescription of graded exercise.

While this explanation makes sense (remember what happens to limbs when they’re in plaster for six weeks? all skinny and wasted?) – it doesn’t inevitably hold, in my experience. I vividly recall a person who routinely swam 20 lengths of an Olympic pool in very fast time every day, yet could not, in his estimation, return to any kind of work, and who did not sit – for an entire three week programme. It’s always seemed a bit odd to me that even though people report they can’t do many everyday activities, they can complete a rigorous gym programme.

So, skeptical me was very pleased to see another paper by the wonderful Nicole Andrews, occupational therapist and PhD, and her colleagues Jenny Strong and Pamela Meredith. This one is about approach to activity engagement, certain aspects of physical function and pain duration and was published in Clinical Journal of Pain in January this year (reference at the bottom of the page). It’s an important paper because it challenges some of the assumptions often made about activity levels and “fitness”, as well as the use of an operant conditioning model for pacing – pacing involving working to a set quota, rather than letting pain be the guide. The concept of pacing has been woven into most pain management programmes since the early days of Fordyce, but more recently has been criticised for lacking a clear definition, and for very little in the way of empirical support as a stand-alone treatment.

In this study, Andrews and colleagues examined the relationship between certain activities and a “habitual” approach to activity engagement, and pain duration. This is a different approach to studying activity and over- or under- activity in that it examines specific activities rather than using a global measure of disability – and this is important because the people we work with do specific activities (or occupations as I’d call them) and it will be more important to be able to predict the types of activities people do, or not do, rather than simply using a general guide.

Andrews and colleagues used a tool I particularly like called the Pain and Activity Relations Questionnaire (McCracken & Samuel, 2007) – this is a 21-item measure that looks at how people approach their activities. It has three subscales – avoidance, confronting, and pacing. Confronting measures “over”activity, while the other two are self explanatory.  They also used the Oswestry Disability Index, an old standard in measuring physical functioning.

The analysis was really interesting, and well-described for those who want to dig deeper into how this team found their results. I’ll cut to the chase and simply point out that they used the items rather than the overall score of the ODI, which allows for a more fine-grained analysis of the kinds of activities individuals engaged in, and how they approached those activities. This is the stuff occupational therapists and physiotherapists really want to get their teeth into!

So, what did they find?

Firstly, individuals who reported high levels of avoidance and low over-activity also reported significant restriction in personal care tasks, compared with those people who reported low levels of both avoidance and activity. There was no relationship between this item and pain duration, but there was a relationship between pain intensity and interference.

Lifting tolerance, however, was affected by pain duration and pain intensity rather than avoidance patterns. Walking tolerance wasn’t affected by approach to activity, or pain duration, but age and pain intensity were important factors. Sitting tolerance was not related to approach to activity, and only pain intensity was a contributor rather than pain duration. Finally, standing was also not associated with approach to activity and was only related to pain intensity.

Sleep was influenced by approach to activity engagement – and with pain duration. This means people with pain for one year and who were inclined to be “over” active and not avoidant, and those who were highly avoidant and highly “over”active were more likely to report problems with sleep than those with low avoidance and low “over” activity. (BTW I put the “over” in quotes because it could also be called “confronting” or “pushing” or “doing” – I think it’s weird term not yet well-defined). The group most likely to report poor sleep were those reporting high “over”activity and low avoidance who reported sleep problems 9.23 times more than those reporting low “over”activity and low avoidance. Once again, pain severity was the only other variable influencing reporting.

Sex life was not associated with approach to activity engagement, nor to pain duration. Social life, however, was associated with approach to activity engagement with those reporting high avoidance and “over”activity reporting more restrictions than those with low levels of both, along with similar results for those reporting high avoidance and low “over”activity – again, pain duration wasn’t associated, but pain intensity was.

Finally, travel was more likely to be reported a problem by all those compared with the low avoidance, low “over”activity group, with the high avoidance, low “over” activity group most likely to report problems.

What does all this mean?

Bearing in mind that the population from whom these participants were taken were attending a tertiary pain management centre programme, and that this is self-report, the findings from this study are really very exciting. As the authors point out, when the ODI is mapped on to the ICF (International Classification of Functioning, Disability and Health) the instrument covers sleep (body function), personal care, lifting, walking, sitting and standing (activity limitations), and social life and travel (participation restrictions). Activity limitations can also be divided into two domains – mobility and daily activities (basic and instrumental activities of daily life) – walking, standing and sitting are therefore “mobility”, while personal care and lifting are “daily activities”.

These findings show that mobility activities were not associated with an individual’s approach to activity engagement – they differ from the other items in that they’re performance skills, that is, they make up other activities can’t be reduced to a smaller component. The authors suggest that the responses to these items in this study may reflect the individual’s perceived capability to engage in daily activities, as opposed to their actual physical performance to engage in these tasks.

I think this means it’s important to ask about what people do in daily life, rather than rely simply on reported levels of walking or sitting. Tie self report into activities – for example, sitting tolerance might be best described in terms of whether a person can sit to watch a whole TV programme, or whether they need to get up during the ad breaks.  It’s important to note the relationship between approach to activity and poor sleep – sleep being one of those aspects of living with pain that people most want addressed. Perhaps by moderating the approach to activity we might be able to help people develop more effective sleep patterns. It also seems to me that we need to tie outcomes from pain management to real life activities in which an individual wants to participate – rather than a more “objective” measure such as the six minute walk test – which might satisfy our urge to measure things in a nice orderly way, but might not be relevant to an individual’s life.

Finally, this study shows that overactivity and avoidance patterns are not inevitably associated with reduced capacity over time. I think this is a “received wisdom” that needs to be unpackaged

 

 

Andrews, N. E., Strong, J., & Meredith, P. J. (2016). The relationship between approach to activity engagement, specific aspects of physical function, and pain duration in chronic pain. Clinical Journal of Pain, 32(1), 20-31

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity patterns in chronic pain. Pain. 2007;130:119–125.

Pain Acceptance rather than Catastrophising influences work goal pursuit & achievement


We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue. After all, life doesn’t stop just because pain is a daily companion. I’ve been interested in how people maintain living well despite their pain, because I think if we can work this out, some of the ongoing distress and despair experienced by people living with pain might be alleviated (while we wait for cures to appear).

The problem with studying daily life is that it’s complicated. What happened yesterday can influence what we do today. How well we sleep can make a difference to pain and fatigue. Over time, these changes influences can blur and for people living with pain it begins to be difficult to work out which came first: the pain, or the life disruption. Sophisticated mathematical procedures can now be used to model the effects of variations in individual’s experiences on factors that are important to an overall group. For example, if we track pain, fatigue and goals in a group of people, we can see that each person’s responses vary around their own personal “normal”. If we then add some additional factors, let’s say pain acceptance, or catastrophising, and look to see firstly how each individual’s “normal” varies with their own acceptance or catastrophising, then look at how overall grouped norms vary with these factors while controlling for the violation of usual assumptions in this kind of statistical analysis (like independence of each sample, for example), we can begin to examine the ways that pain, or goal pursuit vary depending on acceptance or catastrophising across time.

In the study I’m looking at today, this kind of multilevel modelling was used to examine the variability between pain intensity and positive and negative feelings and pain interference with goal pursuit and progress, as well as looking to see whether pain acceptance or catastrophising mediated the same outcomes.

variationsThe researchers found that pain intensity interfered with goal progress, but it didn’t do this directly. Instead, it did this via the individual’s perception of how much pain interfered with goal pursuit. In other words, when a person thinks that pain gets in the way of them doing things, this happens when they experience higher pain intensity that makes them feel that it’s hard to keep going with goals. Even if people feel OK in themselves, pain intensity makes it feel like it’s much harder to keep going.

But, what’s really interesting about this study is that pain acceptance exerts an independent influence on the strength of this relationship, far more than pain catastrophising (or thinking the worst). What this means is that even if pain intensity gets in the way of wanting to do things, people who accept their pain as part of themselves are more able to keep going.

The authors of this study point out that “not all individuals experience pain’s interference with goal pursuit to the same extent because interference is likely to depend on pain attitudes” (Mun, Karoly & Okun, 2015), and accepting pain seems to be one of the important factors that allow people to keep going. Catastrophising, as measured in this study, didn’t feature as a moderator, which is quite unusual, and the authors suggest that perhaps their using “trait” catastrophising instead of “state” catastrophising might have fuzzed this relationship, and that both forms of catastrophising should be measured in future.

An important point when interpreting this study: acceptance does not mean “OMG I’m just going to ignore my pain” or “OMG I’m just going to distract myself”. Instead, acceptance means reducing unhelpful brooding on pain, or trying to control pain (which just doesn’t really work, does it). Acceptance also means “I’m going to get on with what makes me feel like me” even if my pain goes up because I do. The authors suggest that acceptance might reduce pain’s disruptive influence on cognitive processes, meaning there’s more brain space to focus on moving towards important goals.

In addition to the cool finding that acceptance influences how much pain interferes with moving towards important goals, this study also found that being positive, or feeling good also reduced pain interference. Now this is really cool because I’ve been arguing that having fun is one of the first things that people living with chronic pain lose. And it’s rarely, if ever, included in pain management or rehabilitation approaches. Maybe it’s time to recognise that people doing important and fun things that they value might actually be a motivating approach that could instill confidence and “stickability” when developing rehabilitation programmes.

Mun CJ, Karoly P, & Okun MA (2015). Effects of daily pain intensity, positive affect, and individual differences in pain acceptance on work goal interference and progress. Pain, 156 (11), 2276-85 PMID: 26469319