- Our definitions of pain matter more to researchers and people who like to philosophise about pain than to people experiencing pain. At the same time, definitions do matter because when the IASP definition of pain was first established, the distinction between the neurobiological underpinnings of pain – and the experience – was clear. And this matters because neurobiology is only part of the picture. (Chekka & Benzon, 2018; Cohen, Quintner & van Rysewyk, 2018; Reuter, Sienhold & Sytsma, 2018; Tesarz & Eich, 2017; Williams & Craig, 2016)
- The idea of “tribes” in pain and pain management is a misinterpretation of our need to work together as clinicians because pain is complex. The old argument that we’ve omitted “the bio” because we use a biopsychosocial framework for understanding pain is, frankly, ignorant. It’s also destructive because we need one another when we try to help people who are seeking our help. And even if someone has a straightforward sprain, fracture, or whatever – that sprain is happening to a living, breathing, thinking, emoting, motivated person. If we are to break down the silo thinking in pain management, we also need to learn how to work together within an interprofessional team. This means learning to speak a common language. This also means including the person with the pain as part of the team. To think that we can ignore the person and focus only on “the tissues” means we also must agree that our contribution as health professionals could be replaced by an algorithm (Gordon, Watt-Watson & Hogans, 2018; Lötsch & Ultsch, 2018; Shluzas & Pickham, 2018 .
- The gap between what is investigated in research institutions and both the concerns of clinicians and patients, and implementing research findings is enormous. Accusing researchers of ‘living in ivory towers’ fails to recognise that most of our active pain researchers in rehabilitation still continue in clinical practice. The gap seems to be between funding agencies (valuing high tech, high impact research) and the concerns of clinicians (often about high value, low tech, and low cost research). There are very active discussions about “how do I use this study” on social media across the board – Twitter, Facebook, LinkedIn, blogging – and these represent possibly the most important vehicles for clinicians, policy-developers, researchers and people living with pain to break down silo thinking and begin to address the factors that contribute to the knowledge translation gap. Many discussions on Exploring Pain: Research and Meaning (Facebook group) end with acknowledgement that funding systems simply do not support collaborative evidence based teamwork (Arumugam, MacDermid, Walton & Grewal, 2018; Bérubé, Poitras, Bastien, Laliberté, Lacharité & Gross, 2018; Chen, Tsoy, Upadhye & Chan, 2018; Romney, Salbach, Parrott & Deutsch, 2018; Tougas, Chambers, Corkum, Robillard, Gruzd, Howard,… & Hundert et al., 2018).
- The social part of pain is receiving increased research and clinical attention – and it’s a messy area of study. Social isn’t well-defined – it can mean social psychology, sociology, culture, health systems, media, feminism, political science, legislation – anything where people interact. Social psychology studies investigate things like trustworthiness, gender effects in interactions, stigma (Naushad, Dunn, Muñoz & Leykin, 2018; Sherman, Walker, Saunders, Shortreed, Parchman, Hansen, … & Von Korff, 2018; Wesolowicz, Clark, Boissoneault & Robinson, 2018), while sociology examines diagnoses and power relationships in healthcare – things like being “too young” for a diagnosis of arthritis (Kirkpatrick, Locock, Farre, Ryan, Salisbury & McDonagh, 2018) or validating the pain of menstruation (Wright, 2018) or a diagnosis of fibromyalgia (Mengshoel, Sim, Ahlsen & Madden, 2018). It seems no accident that many of the pain problems needing “validation” occur more often in women, and fail to have “objective” signs. But social means more than labeling and interacting, it’s also about community values and ideas – and how pain is portrayed by people experiencing pain, and in the media (Kugelmann, Watson & Frisby, 2018). The way WE talk about pain, and how we talk about people living with pain. How people living with pain are portrayed and how they portray themselves (ourselves). I suspect the social aspects of our experience with pain are amongst the most complex and most potent in determining suffering (loss of sense of “who am I?”) and disability (“what can I still do?”).
- Finally, I am encouraged by the wealth of information being shared freely, discussed passionately, and applied in many different forms around the world. I am proud to have been associated with many different groups as we – you, me, people living with pain, us – keep this topic alive and up-front. While I am no great productive scholar, I publish few peer-reviewed articles, and in the eyes of University hierarchy I am insignificant, I believe the conversations had on social media and into the real world have an impact on how we work in the clinic. If we can achieve the things we talk about, even if we achieve only a fraction of those things, we will have helped more people than we can ever imagine. I feel so privileged to have got to know some of the greatest “lived experience” advocates for greater ‘patient’ involvement in our conversations about pain. Isn’t it time we remembered the old adage “nothing about us without us”? Social media allows us to break the code of silence – and the distinction between “us” and “them” in the world of pain. After all, many of “us” are also living well with persistent pain.
Arumugam, V., MacDermid, J. C., Walton, D., & Grewal, R. (2018). Attitudes, knowledge and behaviors related to evidence-based practice in health professionals involved in pain management. International journal of evidence-based healthcare, 16(2), 107-118.
Bérubé, M. È., Poitras, S., Bastien, M., Laliberté, L. A., Lacharité, A., & Gross, D. P. (2018). Strategies to translate knowledge related to common musculoskeletal conditions into physiotherapy practice: a systematic review. Physiotherapy, 104(1), 1-8.
Chen, E., Tsoy, D., Upadhye, S., & Chan, T. M. (2018). The Acute Care of Chronic Pain Study: Perceptions of Acute Care Providers on Chronic Pain, a Social Media-based Investigation. Cureus, 10(3).
Chekka, K., & Benzon, H. T. (2018). Taxonomy: definition of pain terms and chronic pain syndromes. In Essentials of Pain Medicine (Fourth Edition) (pp. 21-24).
Cohen, M., Quintner, J., & van Rysewyk, S. (2018). Reconsidering the International Association for the Study of Pain definition of pain. Pain reports, 3(2).
Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education—with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3).
Kirkpatrick, S., Locock, L., Farre, A., Ryan, S., Salisbury, H., & McDonagh, J. E. (2018). Untimely illness: When diagnosis does not match age‐related expectations. Health Expectations.
Kugelmann, R., Watson, K., Frisby, G (2018). Social representations of chronic pain in newspapers, online media, and film. Pain, in press.
Lötsch, J., & Ultsch, A. (2018). Machine learning in pain research. Pain, 159(4), 623.
Mengshoel, A. M., Sim, J., Ahlsen, B., & Madden, S. (2018). Diagnostic experience of patients with fibromyalgia–A meta-ethnography. Chronic illness, 14(3), 194-211.
Naushad, N., Dunn, L. B., Muñoz, R. F., & Leykin, Y. (2018). Depression increases subjective stigma of chronic pain. Journal of affective disorders, 229, 456-462.
Reuter, K., Sienhold, M., & Sytsma, J. (2018). Putting pain in its proper place. Analysis.
Romney, W., Salbach, N., Parrott, J. S., & Deutsch, J. E. (2018). A knowledge translation intervention designed using audit and feedback and the Theoretical Domains Framework for physical therapists working in inpatient rehabilitation: A case report. Physiotherapy theory and practice, 1-17.
Sherman, K. J., Walker, R. L., Saunders, K., Shortreed, S. M., Parchman, M., Hansen, R. N., … & Von Korff, M. (2018). Doctor-patient trust among chronic pain patients on chronic opioid therapy after opioid risk reduction initiatives: A Survey. The Journal of the American Board of Family Medicine, 31(4), 578-587.
Shluzas, L. A., & Pickham, D. (2018). Human Technology Teamwork: Enhancing the Communication of Pain Between Patients and Providers. In Design Thinking Research (pp. 313-325). Springer, Cham.
Tesarz, J., & Eich, W. (2017). A conceptual framework for “updating the definition of pain”. Pain, 158(6), 1177-1178.
Tougas, M. E., Chambers, C. T., Corkum, P., Robillard, J. M., Gruzd, A., Howard, V., … & Hundert, A. S. (2018). Social Media Content About Children’s Pain and Sleep: Content and Network Analysis. JMIR Pediatrics and Parenting, 1(2), e11193.
Wesolowicz, D. M., Clark, J. F., Boissoneault, J., & Robinson, M. E. (2018). The roles of gender and profession on gender role expectations of pain in health care professionals. Journal of Pain Research, 11, 1121.
Williams, A. C. D. C., & Craig, K. D. (2016). Updating the definition of pain. Pain, 157(11), 2420-2423.
Wright, K. O. (2018). “You have Endometriosis”: Making Menstruation-Related Pain Legitimate in a Biomedical World. Health communication, 1-4.
“Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts.”
― Patrick Rothfuss, The Name of the Wind
So much has been written about language, and I am not a linguist. I am, however, often accused of being pedantic because I like to use words with precision.
In the world of pain rehabilitation/management/treatment/care (see what I did there?!) certain words seem to spark a huge debate. Words like “pain”, “nociception”, “suffering”, “harm”, “avoidance”, “catastrophising” all get a regular hammering in online discussions. Less frequently, words like “guru”, “expert”, “master”, “authority”, “sage” reach the discussion boards and in the same way as “pain”, elicit an almost visceral response.
Before I begin commenting in earnest, I want to preface this piece by making it absolutely clear that I am not commenting on any particular person, organisation, group, business, or endeavour. Please read the whole piece thoroughly before commenting!
I’m not an expert, authority, sage, master or guru. I have years of experience and lots of learning, I’ve studied a lot, I’ve worked with lots of people living with pain, and I’ve worked across a wide range of settings – but they’re all in NZ. I work in an academic institution. I teach postgraduate pain and pain management from a certain perspective. I encourage my students and readers of this blog, as I do all the people I’ve tried to help, to always, always read and be critical of what I say.
I don’t know whether it’s part of growing up in the 1970’s, or it’s the religious upbringing I had, or whether it’s a New Zealand characteristic, but self promotion and the idea that I’m “more important” or more authoritative than anyone else is anathema to me. It’s probably why I give information away, and why I’m not a business owner. Whatever the case I really dislike the idea of guruism. As a concept. As it is applied to healthcare.
When I think of the word guru, I think of someone who believes he or she knows more than normal people, someone who wants (or has) followers (disciples). It smacks of a lack of acknowledging that the more we know the more questions we have and the less we feel we actually know. The word puts the person on a pedestal.
Some people have been my gurus. People I’ve admired, wanted to emulate, who have influenced the way I think about things. I’ve put those people in a position of influence over me. I need to remind myself to be critical, to think independently, to hold different opinions if I’ve thought about the things they say. That’s not easy to do – highly charismatic people are great at influencing me, and in a field of practice where there is great uncertainty, it’s tempting to grasp what looks like an appealing concept and run with it. At this point I’m reminded of the quote: “For every problem there is an answer that is clear, simple, and wrong” (HL Mencken).
What strikes me is that guru is a term derived from Hindi (Sanskrit, actually) and according to Wikipedia and a few other etymology references, was a term accorded to “one who dispels the darkness and takes towards light, traditionally a reverential figure to the student, with the guru serving as a “counselor, who helps mold values, shares experiential knowledge as much as literal knowledge, an exemplar in life, an inspirational source and who helps in the spiritual evolution of a student.” (Thanks Wikipedia) Wikipedia goes on to say “the term is sometimes used in a derogatory way to refer to individuals who have allegedly exploited their followers’ naiveté.”
I see a couple of risks associated with identifying or being identified as a guru. The first is that we believe it ourselves. That we have the knowledge to “dispel the darkness”, and the right to “mould values… an exemplar, an inspirational source”. This can tempt us to be less aware of our own biases, to accept them or make exceptions for them. It can encourage us to think our view is “right”, to stop constantly asking ourselves those difficult questions.
The second is that our followers may do the same. Follow what we say without thinking independently. To read what we write without reading others. To forget to cross-check our work. Add to this the reality that most people who are adopted as gurus have years of experience and knowledge that underpins their superficially-simple (or should that be deceptively simple?) and readily digested approach. This experience and knowledge often can’t be replicated, or isn’t even explicit to adherents – so rather than a multi-layered and complex emergence of understanding, followers may simply pick and choose sound-bites, and apply them liberally and without the nuances the originator brought to the concept. Tell me you haven’t see this in pain rehabilitation over the years! And then, of course, comes the fighty talk and internet wars and tribalism we’ve seen so often.
The third problem or risk is that the people we try to help, those with pain, can be vulnerable to the hype. They too can believe that they “should” respond to the simple message, and if their own experience doesn’t accord with the “wisdom” of the guru, they can begin to blame themselves – and at times, be blamed by adherents.
There are undoubtedly other risks, but these are my key concerns about anyone being viewed as an expert or guru.
Every word begins with a few meanings within a certain context. Then the words grow a life of their own. Words are sociocultural – they have power despite “sticks and stones will break my bones but words with never harm me”. Words continue to acquire meaning and subtle use-changes over time. People in different parts of the world, of different backgrounds, at different ages and in different settings will use words quite differently. For me, guru is a word I really dislike, but for others it’s a legitimate term to describe themselves and their word. The thing is, whether we like it or not, the word has both good and not-so-good associations for people. And both matter. Guru might speak of “aha! here’s someone who can help”, or “a group I feel comfortable with – my tribe”, or “expert with lots of knowledge”. But it might also just as equally speak of hype, inflated ego, a need to be worshiped and collect adherents, blind allegiance.
Along with thinking hard about how I want to represent myself while writing this blog, I’ve also been pondering a list of various ways to describe pain and the neurobiological and experiential apparatus underpinning the experience.
Defining pain is incredibly difficult – while we’ve all experienced pain, we’ve never been able to share the “what it is like” to experience pain. Our personal experience of pain is within contexts we’re familiar with – for many people it really is a short-term experience, a warning of potential damage or threat to bodily integrity (and social, too), a symptom of “something else” that must be attended to, and something that will be resolved once that “something” is fixed. For others it is a stigmatising experience.
For some it’s an experience used to represent going through an ordeal and coming out the other side having learned something. For still others it’s a deeply scarring, personally disruptive experience that isolates and depresses and angers. For some it’s a mystery to be solved. For others it’s a neutral, uncomfortable yes but not distressing experience because it’s familiar and no longer understood to be representing anything much.
Most of these contextual experiences reflect appraisals of the ineffable experience, rather than distinguishing this experience from other experiences such as joy, hunger, fatigue. And I think it’s useful to remember the purpose of a definition – in the case of IASP pain definition, it has allowed researchers, clinicians, and people living with pain to acknowledge that nociception (and associated processes that contribute to our experience of pain) is not the same as pain. And that behaviours we do when we experience pain are also not pain. And that how we view or appraise our experience influences both the experience itself, and our response to it. And FWIW I use the term “it” as a placeholder for “the experience we know as pain”.
Given that words are fluid, why on earth am I trying to argue the toss about how I view words like “guru” and “pain”? Because in this context, where people are talking with one another, clarity of meaning aids us to understand the concept we’re discussing. And because this is a particular context. And this is my opportunity to express my opinion. Readers will undoubtedly interpret what I’ve written in their own way. What I would ask is that people don’t interpret this post as having intentions I don’t have. After all, as the author, I’m probably the only person who can determine my intentions for what I write.
There are times when I look at the research on persistent pain and treatment, and I begin to wonder why I’m still so positive about this field! After all, it seems that although a biopsychosocial or multidimensional framework for pain has been around since the 1970’s, I’m still encountering reasonably recently-graduated clinicians who sincerely believe that whatever treatment they’ve learned is the Bee’s Knees, and Will Truly Fix All Pain. And people who firmly believe that All Pain Is X. Or Y. Or Z. And surely we should do what they say (pay the fee, get the certificate, perhaps even levels 3, 4 and 5!) and the people we see will get completely cured.
Maybe I’m just being a Grinch because it’s coming into Christmas.
Perhaps, too, we’ve all forgotten that treatments for persistent pain don’t happen in a vacuum. The people we work with have first had to recognise that their problem is something they think should be treated. Then they’ve chosen to see someone – and maybe chosen to see us, or been referred to us by someone else. These two steps in treatment response alone make an incredible difference to outcomes.
Imagine if I’m someone who thinks my lumbago is normal, something everyone gets, and don’t see it as something unusual. I might choose not to seek treatment until I’m about to embark on a long trip. I choose to see an osteopath because I think they’re more gentle than a physio (who will only give me exercises), or a chiropractor (who will hurt me!), and I don’t like needles so I avoid acupuncture. I don’t think my problem is serious enough to go see a medical practitioner and besides I think my GP will just send me to the physio.
Now imagine instead that I’m a young woman who loves to dance. I’ve had little niggles in my back before, but last night I got on the dance floor and partied like it’s 1999 (oh, that’s right, we’ve been there, done that!). Anyway I partied the night away until I slipped on some beer on the floor, landed on my butt and now my back is really bothering me. I head to my GP feeling pretty hung over and like I cannot walk because my back is SO sore.
Two reasonably common stories.
Now let’s take a look at a study looking at expectations from people seeking help for chronic pain (persistent pain). Wiering, de Boer, Krol , Wieberneit-Tolman and Delnoij (2018) examined the results of data collected from people with persistent pain. Over 2000 people took part in this study, mainly between the ages of 55 – 64. Most were women, most had been living with pain for a long time (on average 14.9 years). Most (50.7%) obtained treatment intended to reduce or stabilise (27%) their pain, and for many people the pain did stabilise (26%), or reduced to a degree (29.4% + 34% to a lesser degree). BUT, and here’s the thing: 41.8% expected a better result, while 33.3% got a better result than they thought they would.
The killer point is that although nearly 70% of people achieved or did better than they expected, and nearly 40% of patients didn’t expect very much, 30% of people were unsatisfied.
Curiously, there was little relationship between how the clinician communicated and the accuracy of the person’s expectations. It didn’t matter whether the clinicians used shared decision-making, patients felt their outcomes should be better than they were.
BUT importantly, attentive listening, having time available for the person, whether the patient trusted the clinician, and whether the patient thought the clinician had done all he or she could were important predictors of satisfaction.
What points do the authors make about communication and expectations? Well, one is that although communication is important only certain aspects of communication really rated with patients: clinicians thought “instrumental” communication was important. This is things like seeking information, asking questions of the person, asking for consent. Instead what actually helped was “affective” communication: responding to the person’s emotional subtext. Things like taking time to listen, building trust, giving people the idea that the clinician is doing all that he or she can.
There’s a caveat though, and I’ll quote directly “Low scores on the important communication aspects were related to expectations that were too high, while high scores were related to too low expectations. Apparently the perfect level of communication is somewhere in the middle. The relationship between low patient expectations and good affective communication may be a sign that it worries patients if health care providers show too much empathy and therefore come across as concerned.” (p. 6)
What can we do with this information? Well I think we can begin by recognising that helping people establish what’s important to them – what is the outcome they most value – is something often not tabled by us. We think we’re communicating clearly, but maybe not. We should also personalise treatments – help people realise that we’re not just delivering some sort of template or algorithm, but that we’re concerned about their unique needs, wants and lifestyles. We should also be warned that people seeking help from us have very high hopes that we’ll be able to achieve a lot. And of course, if we read the research, we should recognise that in general we don’t have a great track record in persistent pain. Let’s not over-promise!
I think using personalised outcome measures like the Patient Specific Functional Scale or the Canadian Occupational Performance Measure, or Goal Attainment Scaling could help us be more focused on what people want from their treatment. While pain reduction is the ideal – it’s not the only outcome! What point is there to have no pain if you’re still afraid to do things you want to do?
Wiering, B., de Boer, D., Krol, M., Wieberneit-Tolman, H., & Delnoij, D. (2018). Entertaining accurate treatment expectations while suffering from chronic pain: an exploration of treatment expectations and the relationship with patient- provider communication. BMC Health Serv Res, 18(1), 706. doi:10.1186/s12913-018-3497-8
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
When working in pain management, rehabilitation or treatment, it doesn’t take very long before we become painfully (no pun intended) aware that there are different schools of thought about pain and its management.
On the one hand, we have a the straw man version of medicine. To simplify (and believe me, this is the more extreme version of this approach), this model appeals to our desire to find simple explanations for what ails us, and to believe that once found, treating it by removing it, eliminating it, or somehow righting wrongs, will allow the person to live the way they used to, aka “return to normal”. A medical model is predicated upon the idea that diseases can be viewed as separate from the people experiencing them, that those problems can be rectified, and that people are relatively unaffected by what goes on in and around them. Remember I said that this is the extreme, straw man version, because it would be difficult today to find a medical person who wouldn’t also consider “lifestyle” factors.
For example, Alloubani, Saleh & Abdelhafiz (2018) reviewed hypertension and diabetes as risk factors for stroke. They pointed out that “Changes in the lifestyle include dietary changes, which essentially involves consuming vegetables and fruits more (meta-analysis of 9 autonomous types of research has depicted that three to five servings every day decrease stroke risk for 0, 89) and eating less salt . Further lifestyle changes include weight loss, aerobic activity and restricting alcohol intake. It is not suggested to undergo pharmacological treatment till systolic pressures increase to more than 140 mm Hg as well as diastolic increases to over 90 mm Hg brain perfusion. The significance of treating hypertension to decrease the stroke risk injuries is evident; however, the most optimal choice of antihypertensive medicine is not so evident .”
What are the single-factor “disease”-oriented models in pain at the moment? It’s not too hard to find them, so we see studies like Staartjes, Vergroesen, Zeilstra & Schroder (2018) searching for reasons to fuse vertebrae, with the following conclusion: “In patients without prior surgery, the PCT appears to be the most promising prognostic tool. Other prognostic selection tools such as discography and Modic changes yield disappointing results. In this study, female patients and those without prior spine surgery appear to be most likely to benefit from fusion surgery for DDD.” The PCT is essentially a cast around the hips from waist to the top of the leg with a longer leg cast on the side that hurts.
We can see similar appeals to single-factor causal models in studies of core stability – De Blaiser, Roosen, Willems, Danneels, Bossche, & De Ridder (2018) investigating whether this is a risk factor for lower extremity injuries in athletes, while Tayashiki, Mizuno, Kanehisa, & Miyamoto, (2018) investigated the causal effect of intra-abdominal pressure on maximal voluntary isometric hip extension torque.
Now before anyone jumps down my throat, I know we need to isolate factors in order to understand a phenomenon. We do. What I’m more concerned about is when clinicians begin to change their practice on the basis of a study like these – and then apply this to people who are (a) not athletes, (b) not performing maximal hip extension torque, or who otherwise do not fit the research population!
Another straw man
What are the other schools of thought in pain management, rehabilitation and treatment? Well, another is the idea that pain is “all in the brain” – or the mind – and that education alone is both essential, and powerful all on its own. Once again, this idea has some seeds of relevance. Certainly, if you happen to be worried that the pain in your back is going land you up in surgery (after all, you’ve had the PCT!), getting to understand that the pain and what’s going on in your tissues have a very complex relationship, and that it’s OK to move because you’re not doing damage, you’re likely to heave a sigh of relief.
BUT is that all that’s necessary? Once again I head off to some of the lovely single subject experimental studies carried out by Johan Vlaeyen’s lab. One is by Schemer, Vlaeyen, Doerr, Skluda, Nater, Rief & Glombiewski (2018) and clearly shows that clinical change (behavioural as well as changes in pain, disability, fear, acceptance, and self efficacy) occurs mainly during the DOING phase of treatment. Education alone didn’t change these factors, and the authors go on to say “We recommend integrating exposure elements in the management of CLBP to increase its efficacy. Psycho-educational sessions might not be necessary or should be adapted, e.g. with stronger focus on motivational aspects”
A previous study, using cognitive functional therapy showed some similar changes over time (Caneiro, Smith, Rabey, Moseley, & O’Sullivan, 2017).
It seems to be the doing that’s important.
Not a straw man
So what about the much maligned, and much loved, biopsychosocial model?
The tribe adhering to this model is pretty large – and varied in how it actually interprets it! However, it has taken hold in pain conceptualisation since the IASP adopted it in the late 1970’s. IASP was established in 1973 by John Bonica, and represents the largest group in the world of clinicians, researchers, policy-makers, and now people living with pain. It adopted the BPS model as a way to understand a person’s illness (note: not the disease). A great outline from 2010 (the Global Year against Musculoskeletal Pain) can be found here: click
What does it actually mean? Simply put, it means that while a person might have a disease process within their body, at the same time, they’re a person who has (1) identified that they don’t feel right; (2) decided it’s worth seeking some help for it; (3) consequently now receives the special exemptions his or her society has reserved for people who are ‘ill’; (4) chosen the kind of therapist/’healer’ they think is most appropriate (5) within his or her own sociocultural context; (6) has chosen to proceed with the treatment while simultaneously embarking on culturally-appropriate recovery behaviour. And when this has all finished, *the person remembers what has happened, projects into the future to anticipate what might have happened (or might happen if it reoccurs), carries on with life with this new understanding of what those symptoms mean. Oh, and the initial “identified that they don’t feel right” part – that’s based on past experiences, both personal and vicarious, or in other words, the entire bit from the * to here… again.
Why can’t we all get along?
The question arises then, as to why there are so many tribes who just don’t get along? Well I think we can return to Sapolsky for this. He neatly describes ‘Why your brain hates other people” in this article – click. We can find all sorts of reasons to reject “others”. In pain treatment, rehabilitation and management, tribalism seems to be strongly influenced by income generation, political power, the need to attract followers, and a host of human bias reasons like cognitive dissonance and projecting our assumptions onto others, to preserve autonomy and group status, to stick to things we’ve invested in, to prefer the immediate and simple as opposed to messy and complex, to seek confirmation for what we believe we know… And so on.
My philosophy… for now
So… which tribe do I feel most at home with? I suppose I’m a conservative. I’ve seen many models come and go and I feel most comfortable with a cognitive behavioural approach to pain – that is, that people DO think about their situation, feel various emotions, and then do things as a result. That pain is both a personal experience, but often elicits behaviours that others can see – and respond to. That the body/mind is indivisible. That psychological and social aspects of being human are as important and relevant (but harder to study) than tissues or nerves. That if we can help people experience something, and attribute that new experience to something they’ve done for themselves, then we’re well on the way to helping them manage their situation without having to rely on a healer.
And of course, within different cultural settings, the attribution may be more or less connected with others and their priorities. A loose framework borrowing from psychology (particularly behavioural psych, social psych, and cognitive psych), sociology and anthropology, family systems, as well as traditional “health sciences” of anatomy, physiology, neurobiology and so on. And what that means is reading really widely, holding off on new and groovy theories and practices until more is known about them, and not being swayed by the majority rules. Because in my day-to-day work, within an orthopaedic surgery and musculoskeletal department, mine is possibly a fairly outlying position.
Where does this leave me? Well I think consistently reading and flexibly considering the various pieces of information being discovered helps me to be pretty humble about what I prefer to teach, and to do in the clinic. I’ve been blogging continuously for 11 years now, and I think my reputation is of being moderate, considerate and thoughtful. I’m not terribly shouty. I don’t call people names, or get angry because someone has quoted something I might have said out of context. Why? Because I’d rather focus on what I think matters. And in the end, what people think of me matters a lot less than (hopefully) what the research I present shows.
Alloubani, A., Saleh, A., & Abdelhafiz, I. (2018). Hypertension and diabetes mellitus as a predictive risk factors for stroke. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 12(4), 577-584. doi:https://doi.org/10.1016/j.dsx.2018.03.009
Caneiro, J., 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.
De Blaiser, C., Roosen, P., Willems, T., Danneels, L., Bossche, L. V., & De Ridder, R. Is core stability a risk factor for lower extremity injuries in an athletic population? A systematic review. Physical Therapy in Sport, 30, 48-56.
Johnson, C. D., Whitehead, P. N., Pletcher, E. R., Faherty, M. S., Lovalekar, M. T., Eagle, S. R., & Keenan, K. A. The Relationship of Core Strength and Activation and Performance on Three Functional Movement Screens. Journal of Strength & Conditioning Research, 32(4), 1166-1173.
Staartjes, V. E., Vergroesen, P. A., Zeilstra, D. J., & Schroder, M. L. (2018) Identifying subsets of patients with single-level degenerative disc disease for lumbar fusion: the value of prognostic tests in surgical decision making. Spine Journal: Official Journal of the North American Spine Society, 18(4), 558-566.
Schemer, L., Vlaeyen, J. W. S., Doerr, J. M., Skoluda, N., Nater, U. M., Rief, W., & Glombiewski, J. A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behav Res Ther, 108, 58-67. doi:10.1016/j.brat.2018.07.002
Tayashiki, K., Mizuno, F., Kanehisa, H., & Miyamoto, N. Causal effect of intra-abdominal pressure on maximal voluntary isometric hip extension torque. European Journal of Applied Physiology, 118(1), 93-99.
Today’s post is occasioned by reading several discussions on various forums where the term “pain science” and various adjectives to describe this kind of practice. For those who don’t want to read the rest of my ramblings: no, it’s not a thing, science is an approach to understanding phenomena, and I would have thought all health professionals would use a science-based approach to treatment.
I went on to Google, as you do, to find out when this term began its rise in popularity. Google wasn’t particularly helpful but did show that it’s been around since 2004 at least, and seems to have been centred around the US, UK and Australia in roughly May 2004. I can’t grab data from earlier than this, sadly, but I think it’s interesting to take a look at the popularity peaks and troughs…
So, what does “pain science” mean to commentators? I haven’t delved in too deeply to the social media use of the term, but given I’m a social animal and have written my blog since 2007 (which is mainly on “pain science”) I’ve encountered it many times. It seems to be related to using a neurobiological explanation for pain as an experience (referring to the phenomenon and the underlying biological processes involved) rather than focusing purely on biomechanics or tissue damage/nociception as the key force. And it does seem to tie in with the emergence of “Explain pain” as one way of helping people reconceptualise their experience as something they can influence rather than something other people need to “fix”.
Commentators who aren’t in love with the “explain pain” thing have said things like “the pain science camp” or as one person put it “There’s your manual PTs, your pain science PTs, and your just load it PTs etc”
I went on to Twitter and the hashtag #painscience was paired with #BPSModel and #PT and #physicaltherapy (or variations), #chronicpain #exercise #lowbackpain – and so on.
So what do I think pain science means if it’s not a neurobiological approach to pain management? Well – pain science is a lot like cardio-respiratory science, and neurological science, and psychological science – it’s about applying a scientific approach to understanding pain. Science has been defined as “the intellectual and practical activity encompassing the systematic study of the structure and behaviour of the physical and natural world through observation and experiment.” In this instance, Google is your friend. So science is about systematically studying phenomena through observation and experimenting. If we apply this to pain – it’s the systematic study of structure and behaviour of the phenomenon we call ‘pain’ through observation and experiment. For what it’s worth, scientific study of pain has been going on since… oh at least Descartes, but probably much earlier given that pain is a ubiquitous and essential part of human experience.
To me, understanding pain involves multiple disciplines: yes to biology, and especially neurobiology because the experience (as we understand it now) involves neurobiological processing. But it’s also about psychology –
the scientific study of the human mind and its functions, especially those affecting behaviour in a given context; sociology – the study of the development, structure, and functioning of human society; the humanities – the study of how people process and document the human experience; politics – the activities associated with the governance of a country or area, especially the debate between parties having power; and Anthropology – the study of humans and human behavior and societies in the past and present. Social anthropology and cultural anthropology study the norms and values of societies. Linguistic anthropology studies how language affects social life.
So to describe an entire approach to understanding a phenomenon as if it’s a “movement” or “camp” or “dogma” or even “tribe” suggests serious misunderstanding of both science and of an intervention.
What is “explain pain” then, or pain neurobiology education? – it’s an explanation of some of the biological elements of our nociceptive system as they combine to produce the experience we know as pain. For some people it’s the first time anyone took the trouble to explain why the pain of a papercut feels so bad compared with, for example, the pain of a sprained ankle; and why they still experience pain despite having no “damage” as visible on imaging. It’s an attempt to give people a frame of reference from which to understand their own journey towards recovering from a painful injury/disease/problem. In itself it’s not new: explanations for pain have been used in pain management programmes since the 1970’s (and earlier, if we consider that Fordyce used explanations in his behavioural approaches to pain management), and have routinely drawn on current pain research to help provide explanations that make sense to both the person and the clinician. The distinction between earlier explanations which drew heavily on the gate control theory, and this latest iteration is that the explanations are more complex, pain is considered to be an “output” that emerges from multiple interactions between brain and body, and that’s about it. Oh and it’s been picked up and enthusiastically used by physiotherapists (and other primarily body therapists) around the world.
What’s the evidence for this approach? Well, IMHO it’s not intended to be a stand-alone “treatment” for most people experiencing pain. I see giving an explanation as integral to usual practice, just as we do when we explain why it’s not a good idea to go running on a newly sprained ankle or why we’re suggesting a mindfulness to someone with a panic disorder. So far there have been a lot of studies examining variants of “explaining pain” alone or in combination with a number of other treatments including exercise. A recent systematic review and meta-analsyis of “pain neuroscience education” for chronic low back pain found eight papers (with 615 participants) showing that in the short-term, this kind of education reduces disability (by 2.28 points on the Roland-Morris Disability Questionnaire which is a 24 point scale) in the short-term and a slightly lesser effect in the long-term (2.18). There were greater effects when this was combined with physiotherapy, though we often don’t know exactly what is included in “physiotherapy”. There was some evidence that this kind of education helps reduce pain scores (by 1.32) but only in combination with other physiotherapy interventions. The authors pointed out that the strength of evidence for education on pain in the short term was low to moderate, but that it doesn’t have much of an impact on pain-related fear and avoidance, or on pain catastrophising (Wood & Hendrick, in press).
To compare this with another active treatment, exposure therapy for fear of movement/reinjury in chronic low back pain, de Jong, Vlaeyen, Onghena, Goossens, Geilen & Mulder (2005) performed a careful study of six individuals, using a single case experimental design. (If you’re not familiar with this approach to research – it’s extremely rigorous and useful in a clinical setting, this link takes you to a chapter discussing its use). The aim was to establish which part of treatment “did the work” to change behaviour, but also measured pain intensity, and fear of pain and movement. The treatments were information about pain and mechanisms, and the activities were those the person particularly wanted to be able to do. Their findings identified that explanations do little to pain intensity, avoidance or fear – but what actually worked was doing graded exposure. In other words, experiencing something different, DOING that something different in the real world, was more effective than talking about why someone shouldn’t be afraid. A much more recent replication of this study was conducted by Schemer, Vlaeyen, Doerr, Skoluda, Nater, Rief & Glombiewski (2018) and shows the same result: doing trumps talking about doing.
When we sit down and take a cold hard look at what we do in pain management we can see that the field has to draw on a huge range of disciplines and fields of study to understand the problems people experiencing pain have. This is, in fact, why Bonica and colleagues first established the International Association for the Study of Pain, and why multidisciplinary (and now interprofessional) pain management teams and approaches were established. None of us can possibly hold all the knowledge needed to work effectively in the area. At the same time, as health professionals working with people, we do need to have some foundation knowledge about biology, disease, illness, psychology, sociology and anthropology. These areas of study inform us as we work hard to help people get their heads around their pain. Do we need to be experts in all of these fields? Yes – if you work completely in isolation. No – if you work within an extended team (whether co-located or otherwise). Pain research will continue to push our understanding ahead – and to be responsible health professionals, we must incorporate new understandings into our practice or we risk being unprofessional and irrelevant. I would go as far as to say we’re irresponsible and harming patients if we fail to incorporate what is known about pain as a multidimensional experience. It’s time to back away from temporary guruism and move towards a far more nuanced, and perhaps less flighty approach to understanding pain.
Pain science. No, it’s not a thing. Pain being examined through multiple scientific lenses: definitely a thing.
NB for the avoidance of doubt: pain is never a “thing” but examining pain through multiple scientific lenses involves many “things”. (Merriam-Webster – click)
de Jong, J. R. M., Vlaeyen, J. W. S. P., Onghena, P. P., Goossens, M. E. J. B. P., Geilen, M. P. T., & Mulder, H. O. T. (2005). Fear of Movement/(Re)injury in Chronic Low Back Pain: Education or Exposure In Vivo as Mediator to Fear Reduction? [Article]. Clinical Journal of Pain Special Topic Series: Cognitive Behavioral Treatment for Chronic Pain January/February, 21(1), 9-17.
Schemer, L., Vlaeyen, J. W., Doerr, J. M., Skoluda, N., Nater, U. M., Rief, W., & Glombiewski, J. A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behaviour Research and Therapy, 108, 58-67.
Wood, L., & Hendrick, P. A. A systematic review and meta-analysis of pain neuroscience education for chronic low back pain: Short-and long-term outcomes of pain and disability. European Journal of Pain, 0(0). doi:doi:10.1002/ejp.1314
Prompted by reading a paper by Linton, Nicholas and Shaw (in press), today’s post is about various service delivery models for low back pain and not the content of back pain treatment.
Service delivery in New Zealand is assumed to be based on getting most bang for the buck: we have a mainly socialised healthcare system, along with a unique “no fault, 24 hour” insurance model for accidents whether at work or elsewhere, which means market forces existing in other countries are less dominant. There are, however, many other influences on what gets delivered and to whom.
Back to most bang for buck. With a limited healthcare budget, and seriously when is there ever NOT a limited budget in health, it would make sense to a thinking woman for healthcare to focus on high value treatments. Treatments that have large impact and are low cost. In low back pain, the techno-fix has limited application. Things like costly surgical approaches (synthetic disc replacements, fusions to stop vertebral movement) should be reserved for only those with clear indications for the procedure, and given on the basis of clinical need rather than in response to a distressed person. The outcomes just are not all that great (see Maher, Underwood & Buchbinder (2017) for a good review of nonspecific low back pain).
High value and low cost treatments are typically delivered by low status clinicians. Those “nonmedical” people like occupational therapists, physiotherapists, osteopaths, chiropractors and the like. Maybe it’s for this reason that these treatments are relatively poorly funded. We lack lobby power.
Back to service delivery models. Currently in Christchurch, where I live, there is a health pathway (in other words, a service delivery model) developed in collaboration with GP’s, physiotherapists, osteopaths and secondary care. The model adopted applies to ALL episodes of low back pain, and uses the STarTBack tool to triage those who may need more intensive treatment under a biopsychosocial model (mainly because of the additional risk psychosocial factors pose for these people), and to continue with treatment as usual for those with lower risk as measured by this tool.
After about six weeks, if the person hasn’t responded to treatment, clinicians are meant to refer the person to a team for review and to see whether additional treatments or another pathway might be appropriate. Unfortunately, there is no indication of the makeup of that team, and no obligation for the clinician to send the person to it. I’m not sure about clinical audit of this pathway, and again this isn’t clear.
One of the problems (amongst many) with this approach is that six weeks without responding to treatment and the time needed after this to review the file, then be referred elsewhere is a very long time to someone experiencing back pain. A very long time. By six weeks it wouldn’t be surprising if the person’s sick leave is gone. If they’re receiving ACC the processes will have kicked in, but for the person who has typical grumpy back symptoms without an “accident” initiating it, there may be nothing.
Linton, Nicholas and Shaw point out that all of the triaging approaches for low back pain hold assumptions. The three are stepped care (begin with low intensity, once that hasn’t helped progress to more intensive and so on); stratified (triage those with high risk, and treat them accordingly, while low risk get lower intensity treatment); and matched care (treatments are administered according to an algorithm based on grouping people with similar characteristics).
The assumptions of stepped care include that people with basic acute low back pain will recover relatively easily, while those who need more help will be fine waiting for that additional level of care. There’s an assumption that factors leading to chronic disability occur in stages – the longer a person waits the more risk factors will appear – but this isn’t actually the case. Many people present with risk factors from the very beginning (and they can be identified), while waiting only allows those problems to be cemented in place. At the same time, we know acute low back pain is quite a rare thing: most people will have their first bout of back pain in adolescence, and will have learned good and not so good habits and attitudes from that experience. Another assumption is that duration of back pain doesn’t harm, but we know delayed attention to risk factors for chronicity is harmful. Stepped care can be useful because it’s efficient, easy to implement and overtreatment is less likely – but what about the person who appears with all the risk factors evident from the beginning? These people may not get adequate or appropriate treatment from the outset.
In stratified care, treatment is provided according to the category of risk the person presents with, maybe circumventing some of the problems from stepped care. Stratified care assumes we’re able to identify risk factors, and that they are stable from the outset rather than changing over time. It also assumes that risk factors exert a cumulative effect with more risk factors meaning greater risk. BUT while screening can identify some risks, and those at low risk get more adequate treatment while higher intensity treatment is given to those with more risk, this approach doesn’t identify underlying mechanisms, and more comprehensive treatments addressing specific issues may not be provided. This approach may not even consider the impact of workplace factors, family dynamics, social and recreational issues. It’s also pretty challenging to implement as I think the Christchurch example demonstrates.
In matched care risk factors are identified and treatments are matched to the person’s needs, and like stratified care it assumes that risk factors can be identified, are stable, and that they can form a “profile” or subtype. This approach also assumes that tailoring interventions to individual risk will be more efficient than alternatives. There’s some support that screening can identify some risks, and that profiles can be constructed – but this continues to be a work under progress. Some of the limitations are the emerging nature of research into grouping people according to multiple indicators is complex, particularly at the beginning of treatment, and treatments matching profiles are therefore also under development. It’s a very complex approach to implement so I can understand why local health authorities may be reluctant to embark on this strategy. It’s also back to the problem of assuming that people’s risk profiles are stable over time.
What do we do?
One part of me thinks, well it doesn’t matter really because as a lowly nonmedical person I have very little influence over health systems, the perverse incentives that drive them, and absolutely no political clout whatsoever. BUT I know that the “wait and see” six weeks before reviewing progress is not helping. And the current considerations fail to integrate those important workplace, family, socio-economic and contextual factors that are hard to quantify.
We already know that low back pain guidelines are routinely ignored by most clinicians in favour of “what I do” and “it’s worked before” and “the guidelines are biased so I won’t follow them”. There’s also the fear that by identifying psychosocial risk factors we’re condemning people to the “back pain is really in your head” meme (it’s even something I’ve been accused of. FWIW I think low back pain is far more complex and is multifactorial. Psychosocial factors are certainly more useful at predicting disability than biomechanical or diagnostic ones, but this doesn’t mean the problem is purely psychological. <steps off soapbox>). Furthermore, it’s clear that not only do physiotherapists feel poorly-prepared to identify and work with psychosocial factors (Singla, Jones, Edwards & Kumar, 2015; Zangoni & Thomson, 2017), so also do medical practitioners although for different reasons (Coudeyre, Rannou, Tubach, Baron, Coriat, Brin et al, 2006). It’s difficult to open Pandora’s box when you only have 10 minutes with a patient.
As Linton, Nicholas and Shaw (in press) point out, training is needed before clinicians can feel both confident and efficient at screening and then managing low back pain via an integrated multidimensional model. “Role” delineation (who can contribute to the various aspects of treatment?) and the paucity of funding for allied health within primary care, especially in New Zealand makes this approach an aspiration.
Naturally I’d like to see a range of different health professionals involved in developing health pathways. Not just professionals, but people well-versed in understanding the research literature and those with effective knowledge translation skills. I’d love to see high value and low cost treatments provided rather than techno-fix approaches, especially when the high value treatments are significantly safer and develop personal self efficacy and locus of control. Wouldn’t that be a thing to see?
- Coudeyre, E., Rannou, F., Tubach, F., Baron, G., Coriat, F., Brin, S., … & Poiraudeau, S. (2006). General practitioners’ fear-avoidance beliefs influence their management of patients with low back pain. Pain, 124(3), 330-337.
- Linton, S. J., Nicholas, M., & Shaw, W. Why wait to address high-risk cases of acute low back pain? A comparison of stepped, stratified, and matched care. Pain. in press
- Maher, C., Underwood, M., & Buchbinder, R. (2017). Non-specific low back pain. The Lancet, 389(10070), 736-747.
- Singla, M., Jones, M., Edwards, I., & Kumar, S. (2015). Physiotherapists’ assessment of patients’ psychosocial status: are we standing on thin ice? A qualitative descriptive study. Manual Therapy, 20(2), 328-334.
- Zangoni, G., & Thomson, O. P. (2017). ‘I need to do another course’-Italian physiotherapists’ knowledge and beliefs when assessing psychosocial factors in patients presenting with chronic low back pain. Musculoskeletal Science and Practice, 27, 71-77.
Over the past few years I’ve been pondering the presumed gap between people living with pain and the people who “treat” or work with them. Most of my readers will know that I live with widespread pain (aka fibromyalgia) or pain that is present in many parts of my body, and the associated other symptoms like DOMS that last for weeks not a day or two, and increased sensitivity to heat, cold, pressure, chilli, sound and so on.
I first “came out” with my pain about 15 years ago: that is, I first disclosed to people I worked with that I had this weird ongoing pain – and finally joined the dots to realise that yes, I did in fact meet criteria for fibromyalgia. I recall feeling a sense of embarrassment, almost shame, for admitting that I had pain that did not go away – as if I shouldn’t acknowledge it, or speak about such “personal” stuff in a chronic pain service.
There’s a weird sort of cloud over being up-front about persistent pain when you’re working in the field. Perhaps I’m a little sensitive, but I’ve seen the little eye roll and the comments about other people who work in the same field as their health problem: drug and alcohol people who have had their experience with drug and alcohol problems; those working in mental health with their mental health issues; people who have survived rape or other criminal activities going on to work as counsellors… Like “are you meeting their needs, or your own?”
Sapolsky wrote about “why your brain hates other people” pointing out that “us/them” responses occur globally and happen instantly and effortlessly. Our neurobiological ancestry has set us up for this process such that within a 20th of a second of seeing a face of “them” we show “preferential activation of the amygdala, a brain region associated with fear, anxiety, and aggression…other-race faces cause less activation than do same-race faces in the fusiform cortex, a region specializing in facial recognition; along with that comes less accuracy at remembering other-race faces.”
It’s therefore not surprising that when a group of “us” work together to help “them”, coming almost as colonialists with our goodies to dispense to the needy natives, we find it a little eerie, maybe a little confronting when “they” want to come along as equals.
In the 1960’s the disabilities rights movement was founded in the United States. Called Independent Living, and founded by people living with disabilities, this organisation campaigned strongly to be seen firstly as people, and only secondly as consumers or healthcare users. “Nothing about us without us” was one of the key slogans used in their campaign. It’s only just happening in chronic pain management.
Persistent pain is often called an invisible problem. Because pain initially seems to be from an acute problem, people are treated within services for the body system involved. We have gynaecology services for pelvic pain, cardiology for non-cardiac chest pain, orthopaedic surgery and neurology for low back pain and headache – and so the problem of chronic pain fails to be accounted for because this information isn’t collated as a single problem.
Persistent pain is also invisible because no-one sees the person looking different. I don’t know how many times people living with pain have said to me “Oh but people say you look so well, surely there’s nothing wrong with you?”
And the even more invisible group are clinicians who also live with pain. Believe me, it’s not something many of “us” want to admit! And yet, if the statistics are correct, probably 1 in 5-6 of the clinicians working in persistent pain management have pain that’s lasted longer than 3 months.
“But I’m not like them” I hear you say! What’s that about? Oh that’s right, “we” have the answers… “We” are not struggling from day to day. “We” have it all together.
It’s a protective response, I think. One that protects clinicians from acknowledging our own vulnerability and powerlessness when it comes to knowing how to live daily life with pain. One that means clinicians can still pretend to have “the answers” while simultaneously protecting themselves from recognising just how little difference there is between “us” and “them”.
There are differences, though, and these aren’t pretty and might add to the “us/them” dichotomy.
People who are at greater risk of developing persistent pain (and other comorbidities like mood disorders, sleep disorders, obesity and so on) often come from lower socioeconomic areas. This is not as a result of giving up work and thus dropping income, but is actually a predictor of developing chronic pain (Fryer, Cleary, Wickham, Barr & Taylor-Robinson, 2017; Rios & Zautra, 2011; Sampiero, Cardoso, Bush, Riley, Sibille, Bartley et al, 2016). This means the people we see in primary care, or even in tertiary pain management services via the Ministry of Health in NZ, probably have more difficulty accessing transport to see us; have poorer dental care (Whyman, Mahoney, Morrison & Stanley, 2014); may not be able to afford to see a doctor or fill prescriptions (Devaux, 2015); can’t afford to attend a gym – and indeed may not have enough time to go to one after working two low pay jobs.
I wonder if this socioeconomic disparity adds to clinicians’ tendency to think of people with pain as “other”. On top of greater prevalence of mental health problems (Scott, Lim, Al-Hamzawi, Alonson, Bruffaerts, Caldas-de-Almeida et al, 2016) which can add to this sense of “otherness”, particularly when those disorders include “difficult personalities” (Carpenter & Trull, 2015).
It’s unpleasant and slightly unsettling to think of yourself as a clinician being, let’s call it what it is, prejudiced. And even more disconcerting when one of those “others” is one of “us”. Sapolsky suggests several ways of reducing the “them” and “us” divide:
- Contact – particularly prolonged, task-focused contact where everyone is treated the same
- Making the implicit explicit – show people their biases (what I’m doing in this article!), perspective taking – what is it like to walk a mile in the shoes of a person trying to deal with persistent pain with limited resources?
- Replace “essentialism” with “individuation” – explaining that there are fewer differences between “us”, and that the things we do see can be explained in other ways, less “fixed” ways than “oh it’s genetic”
- Flatten hierarchies – reduce the gap between “them” and “us”. In persistent pain this should mean ensuring people living with pain are involved in both service design and delivery. Nothing about us without us.
Do I expect this gap reduction to be easy? Not at all. There are significant barriers between full acceptance: there are angry people who have had their pain experience invalidated; there are clinicians who have been sworn at, spat at, assaulted (yes, it’s happened to me). But until we begin talking, we simply will not begin to address this problem.
Carpenter, R. W., & Trull, T. J. (2015). The pain paradox: Borderline personality disorder features, self-harm history, and the experience of pain. Personality Disorders: Theory, Research, and Treatment, 6(2), 141.
Devaux, M. (2015). Income-related inequalities and inequities in health care services utilisation in 18 selected OECD countries. The European Journal of Health Economics, 16(1), 21-33.
Fryer, B. A., Cleary, G., Wickham, S. L., Barr, B. R., & Taylor-Robinson, D. C. (2017). Effect of socioeconomic conditions on frequent complaints of pain in children: findings from the UK Millennium Cohort Study. BMJ paediatrics open, 1(1).
Rios, R., & Zautra, A. J. (2011). Socioeconomic disparities in pain: The role of economic hardship and daily financial worry. Health Psychology, 30(1), 58.
Sampiero, T., Cardoso, J., Bush, R., Riley, J., Sibille, K., Bartley, E., … & Bulls, H. (2016). (209) Association of socioeconomic factors with pain and function in older adults with knee osteoarthritis. The Journal of Pain, 17(4), S28.
Scott, K. M., Lim, C., Al-Hamzawi, A., Alonso, J., Bruffaerts, R., Caldas-de-Almeida, J. M., … & Kawakami, N. (2016). Association of mental disorders with subsequent chronic physical conditions: world mental health surveys from 17 countries. JAMA psychiatry, 73(2), 150-158.
Whyman, R. A., Mahoney, E. K., Morrison, D., & Stanley, J. (2014). Potentially preventable admissions to N ew Zealand public hospitals for dental care: a 20‐year review. Community dentistry and oral epidemiology, 42(3), 234-244.
From the particular to the general –
Clinical reasoning in the real world
I make no secret of my adherence to evidence-based healthcare. I think using research-based treatments, choosing from those known to be effective in a particular group of people in a specific context helps provide better healthcare. But I also recognise problems with this approach: people in clinical practice do not look like the “average” patient. That means using a cookie cutter, or algorithm as a way to reduce uncertainty in practice doesn’t, in my humble opinion, do much for the unique person in front of me.
I’ve been reading Trisha Greenhalgh’s recent paper “Of lamp posts, keys, and fabled drunkards: A perspectival tale of 4 guidelines”, where she describes her experience of receiving treatment based on the original description given for her “fall”. The “fall” was a high-impact cycle accident with subsequent limb fractures, and at age 55 years, she was offered a “falls prevention” treatment because she’d been considered “an older person with a fall”. Great guidelines practice – wrong application!
Greenhalgh goes on to say “we should avoid using evidence-based guidelines in the manner of the fabled drunkard who searched under the lamp post for his keys because that was where the light was – even though he knew he’d lost his key somewhere else”Greenhalgh (2018), quoting Sir John Grimley Evans
When someone comes to see us in the clinic, our first step is to ask “what can I do for you?” or words to that effect. What we’re looking for is the person’s “presenting symptoms”, with some indication of the problem we’re dealing with. Depending on our clinical model, we may be looking for a diagnostic label “rheumatoid arthritis” or a problem “not sleeping until three hours after I go to bed”.
What we do next is crucial: We begin by asking more questions… but when we do, what questions do we ask?
Do we follow a linear pattern recognition path, where we hypothesise that “rheumatoid arthritis” is the problem and work to confirm our hypothesis?
Our questions might therefore be: “tell me about your hands, where do they hurt?” and we’ll be looking for bilateral swelling and perhaps fatigue and family history and any previous episodes.
Or do we expand the range of questions, and try to understand the path this person took to seek help: How did you decide to come and see me now? Why me? Why now?
Our questions might then be: “what do you think is going on? what’s bothering you so much?”
Different narratives for different purposes
Greenhalgh reminds us of Lonergan (a Canadian philosopher), as described by Engebretsen and colleagues (2015), where clinical enquiry is described as a complicated process (sure is!) of 4 overlapping, intertwined phases: (a) data collection – of self reported sensations, observations, otherwise known as “something is wrong and needs explaining”; (b) data interpreting “what might this mean?” by synthesising the data and working to recognise possible answers, or understanding; (c) weighing up alternative interpretations by judging; and (d) deciding what to do next, “what is the right thing to do”, or deliberation.
Engebretsen and colleagues emphasise the need to work from information from the individual to general models or diagnoses (I’d call this abductive reasoning), and argue that this process in the clinic should be “reflexive” and “informed by scientific evidence” but warn that scientific evidence can’t be replaced simply by reflexive approaches.
The reason for conceptualising clinical reasoning in this way is that a narrative primarily based on confirming a suspicion will likely reduce the number of options, narrow the range of options considered, and if it’s focused on diagnosis, may well over-ride the person’s main concern. A person may seek help, not because he or she wants a name or even treatment, but because of worries about work, the impact on family, or fears it could be something awful. And without directly addressing those main concerns, all the evidence-based treatments in the world will not help.
Guidelines and algorithms
Guidelines, as many people know, are an amalgamation of RCT’s and usually assembled by an esteemed group of experts in an attempt to reduce unintended consequences of following poorly reasoned treatment. They’re supposed to be used to guide treatment, supporting clinical reasoning with options that, within a particular population, should optimise outcomes.
Algorithms are also assembled by experts and aim to provide a clinical decision-making process where, by following the decision tree, clinicians end up providing appropriate and effective treatment.
I suppose as a rather idiosyncratic and noncomformist individual, I’ve bitterly complained that algorithms fail to acknowledge the individual; they simplify the clinical reasoning process to the point where the clinician may not have to think critically about why they’re suggesting what they’re suggesting. At the same time I’ve been an advocate of guidelines – can I be this contrary?!
Here’s the thing: if we put guidelines in their rightful place, as a support or guide to help clinicians choose useful treatment options, they’re helpful. They’re not intended to be applied without first carefully assessing the person – listening to their story, following the four-step process of data collection, data interpretation, judging alternatives, and deciding on what to do.
Algorithms are also intended to support clinical decision-making, but not replace it! I think, however, that algorithms are more readily followed… it’s temptingly easy to go “yes” “no” and make a choice by following the algorithm rather than going back to the complex and messy business of obtaining, synthesising, judging and deciding.
Perhaps it’s time to replace the term “subjective” in our assessment process. Subjective has notions of “biased”, “emotional”, “irrational”; while objective implies “impartial”, “neutral”, “dispassionate”, “rational”. Perhaps if we replaced these terms with the more neutral terms “data collection” or “interview and clinical testing” we might treat what the person says as the specific – and only then move to the general to see if the general fits the specific, not the other way around.
Engebretsen, E., Vøllestad, N. K., Wahl, A. K., Robinson, H. S., & Heggen, K. (2015). Unpacking the process of interpretation in evidence‐based decision making. Journal of Evaluation in Clinical Practice, 21(3), 529-531.
Greenhalgh, T. (2018). Of lamp posts, keys, and fabled drunkards: A perspectival tale of 4 guidelines. Journal of Evaluation in Clinical Practice, 24(5), 1132-1138. doi:doi:10.1111/jep.12925