Learning is perceived as a process of personal and social construction where people are actively involved in making sense of information they interact with, rather than passively receiving it (Kuhthau 2004). This cumulative and developmental process involves the whole person in thinking, acting, reflecting, discovering ideas, making connections, and transforming prior knowledge, skills, attitudes, and values into new knowledge (Dewey 1933).
I’m an educator for much of my time. When I think about it, I’ve been an educator for most of my clinical career – after all, when I helped people learn how to shower and dress again after a stroke, I was teaching. When I help someone work out how to organise their day to optimise energy levels, I’m teaching. And when I interact online in some of the Facebook groups I’m part of, I’m also teaching.
Teaching is the process of attending to people’s needs, experiences and feelings, and intervening so that they learn particular things, and go beyond the given.
When I look at what people do for continuing education, and also how we approach helping people with pain to understand something about how their nervous system works, I think we often do a fine job of providing information. “Information is to behaviour change as spaghetti is to a brick”, said Prof Bill Fordyce, father of behavioural approaches to pain management. As clinicians and educators we spend a great deal of time working out “what” people should/need to know. There’s talk of a “curriculum” for people living with pain so the basic concepts are provided. Information is the “what” – those facts, concepts and often context-free bites of data that are gathered together into information through analysing, cross-referencing, selecting, sorting, summarising or otherwise organising them (Stonier, 1997).
Perhaps where we’re less capable is in supporting people in the process of turning information into knowledge. Knowledge is about integrating information into meaning. It’s magic to see someone have that lightbulb moment when suddenly one bit of information connects with something else the person knows and it begins to make sense!
With CPD I wonder how many of us go to a course, then walk away with our heads jam-packed with new information – then when we walk into clinic we get caught up in the everyday of clinical life, and promptly forget how that new information we’ve stored relates to what we do.
I think the same when I listen to patients talk about what they’ve been told, perhaps about pain, or perhaps about ways they might do things – and they talk of these information bites as disconnected from their daily reality.
To me, the process of developing knowledge involves processing information into personal relevance. It means that, as we learn a new piece of information, we sift through what we already know and establish how the new information might be similar to or different from what we already know. We might ponder when, where, and how this new information can apply. We try using the new information to test its utility. We talk about “what does this mean” with other people as we do this.
A community of practice (Wenger) is a “group of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly”. In a community of practice, people who have become expert or more experienced in doing this activity share their expertise and “knacks of knowing” – novices spend time absorbing what the experts say and do, and ultimately learn to become expert themselves. Communities of practice are everywhere and in our internet and social media-based lives, communities of practice exist virtually as well.
Clinicians often turn to online discussions to carry out their process of turning information into knowledge. Through the debates and discussions (yes, and arguments and flame wars) clinicians become familiar with new information and discuss the implications for practice. It’s common to see clinicians use Instagram, Twitter, Facebook, blogging (yes!) as ways to not only produce information but to also make sense of it.
But when I think of comparable and positive opportunities for people living with pain who are also trying to make sense of the many different bites of information they’re provided with, I’m less certain there is a good place to go to be supported in this process. Much of our clinical treatment is carried out individually, one-to-one with patient. Because pain is invisible and so many people are hopeful the experience will be temporary, meeting with and discussing information about pain and ways to live with pain are rare. In fact, there’s plenty of evidence from research showing that people living with pain feel isolated, abandoned and judged (Cagle & Bunting, 2017; Collier, 2018; Wilbers, 2015). Not the best place to be when trying to put pieces of information together.
While as clinicians, we can offer much information – how good are we at helping people connect that information with what that person already knows? How can we – especially if we don’t experience pain? What would we know of the process of going to various therapists, being told many different things, of the highs and lows of benefits and failures?
I run a group programme called Springboard. It’s a six-week programme, one session a week, with home-based “missions” people can do over the week. I’ve always thought the magic happens not when I give out information, but when participants return with their experiences and share what they’ve learned with one another. I don’t the group is simply bridging a feeling of loneliness or stigma, although it certainly seems to do that. I think the magic happens because participants share what this information means to them, when participants help one another connect a new piece of information to what they already know. Because no-one knows better what the meaning of a new understanding is than people living with pain.
So I question us all. Clinicians – do we help people connect with others who are in the same boat to learn from one another? To make sense of what we try to tell them? People living with pain, do you have ways of sifting through new information so you can work out its relevance to you? Can we bring people together – experts in living well with pain and novices learning how this information might apply?
Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.
Collier, R. (2018). “Complainers, malingerers and drug-seekers”—the stigma of living with chronic pain. In: Can Med Assoc.
Dewey, J. (1933). How we think. a restatement of the relation of reflective thinking to the educative process (Rev. ed.), Boston, MA: D. C. Heath.
Kuhlthau, C.C. (2004). Seeking meaning: a process approach to library and information services. (2nd ed.). Westport, CT: Libraries Unlimited.
Stonier, T. (1997). Information and meaning—An evolutionary perspective. Berlin: Springer.
Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.
Low back pain is, we know, the greatest contributor to days lived with disability (Rice, Smith & Blyth, 2016). And no-one anywhere in the world has found a good mix of services to reduce the number of days lived with disability as a result of this problem. And yet billions of dollars are used to fund research into the many contributors to a shift from acute low back pain to ongoing disability associated with low back pain.
At the same time, treatments that directly target disability, rather than pain (a target considered the most important outcome by Sullivan and Ballantyne, 2016) are difficult to access, by comparison with surgical solutions (or pharmaceutical or procedural). Overuse of unhelpful treatments is thought to occur when treatments are offered that are ineffective, pose high risks of harm, or where the balance between harms and benefits varies considerably (Brownlee, Chalkidou, Doust, Elshaug, Glasziou, Heath et al, 2017). Non-pharmcological, non-surgical, and non-procedural treatments fall into the large amorphous group of treatments often delivered by allied health clinicians.
When asked, clinicians (aka doctors, in this instance) were found in one study, to fall into three groups: Multimodel/Aggressive = 14%; Psychosocial/Nonopioid = 48%; and Low action = 38% (Phelan, van Ryn, Wall & Burgess, 2009). On the face of it, this looks reasonably good except when we have a look at what the numbers mean. The Low action group were more likely to move from prescribing one opioid to another opioid, suggest that patients take their opioids more regularly and at a higher dose, use a short-acting opioid, treat with a long-action opioid on a fixed basis, and order more diagnostic testing. The Psychosocial/Nonopioid group were more prepared to use psychosocial clinical approaches, refer elsewhere, not use opioids, and were happier to discuss emotional assessments, refer for physiotherapy, mental health evaluation, refer to pain specialists and so on. But their rationale was not to prescribe opioids because of their concern about tolerance, diversion and addiction. Finally, the Multimodal/Aggressive group combined the approaches of both the previous groups and the authors thought this most closely represented “the multimodal treatment strategy endorsed by proponents of the biopsychosocial model” (Phelan, van Ryn, Wall & Burgess, 2009, p. 1274).
I’m interested in why these clinicians chose the kinds of treatments they did – The authors analysed various aspects of each group and found the belief that pain has a physical cause (MA: 56%; PNO: 35%; LA: 31%; P chi-square < 0.01) and positive attitudes towards using opioids (MA: 3.5 [0.8]; PNO: 3.2 [0.8]; LA: 3.4 [0.8]; Pf-test < 0.01) differed by class. Added to this, the physician’s concern also different by class: High concern about drug use/abuse (MA: 39%; PNO: 47%; LA: 19%; Pchi-square < 0.001), and Concern about effectiveness of opioids (MA: 3.6 [1.0]; PNO: 3.4 [1.0]; LA: 3.2 [0.9]; Pf-test = 0.02). Adequate consultation/referral resources also differed by class (MA: 59%; PNO: 65%; LA: 42%; Pchi-square < 0.001).
Let’s look at this – inaccurate beliefs about pain and attitudes towards opioids featured in the choices made by doctors, while feeling there were inadequate consultation and referral resources were especially featured by the very group using these resources most readily!
Treatments that are available but are underused are as problematic for our health system (and the people seeking help) as over-using inappropriate treatments. Glasziou, Straus, Brownlee, Trevena, Dans, Guyatt, Elshaug & Janett et al (2017) describe four stages where people may not get or use helpful treatment:
a total or partial lack of access to health care (because the system does not offer coverage or patients are unable to reach or pay for available care, or both);
unavailability of effective services within the local health-care system;
a failure of clinicians to deliver or prescribe effective, affordable interventions; and
a failure of patients to commence or adhere to effective, affordable interventions. ” (p. 171).
As I look at these four stages, I can see that in New Zealand, 1, 2, 3 and or course 4 all apply. The ones that concern me most are the first three. Why are effective treatments not widely available? Think about the lack of pelvic pain services for men and women (yes, men have pelvises too) where, instead of evidence-based treatment, these people are offered repeated ineffective, invasive and non-evidence-based “exploratory” endoscopic surgeries. Who makes decisions not to fund so-called conservative interprofessional pain rehabilitation?
Why are ineffective services available despite evidence showing their lack of usefulness? Who makes decisions to continue funding ineffective treatments? What vested interests, what power relationships value the status quo even when it’s not helping people?
Why are clinicians failing to deliver effective, affordable treatments? Why is that GPs in New Zealand still don’t follow back pain guidelines, continue to offer imaging “for reassurance” (despite evidence that this kind of reassurance is not reassuring, Linton, McCracken & Vlaeyen, 2008), and fear talking about the psychosocial impact of persistent pain on people? (Darlow, Dowell, Baxter, Mathieson, Perry & Dean, 2013).
Before I have a bunch of aggrieved doctors jump on me for “blaming them”, let me assure you that I have incredible respect for general practitioners. They have an extraordinarily difficult job to do – and we don’t really understand why adopting guidelines is so difficult. Except… Webster, Courtney, Huang, Matz and Christiani (2005), Coudeyre, Rannou, Tubach, Baron, Coriat, Brin et al (2006); Crawford, Ryan & Shipton (2007), Hush (2008), Somerville, Hay, Lewis, Barber, van der Windt, Hill & Sowden (2008), Corbett, Foster, & Ong (2009), Finestone, Raveh, Mirovsky, Lahad & Milgrowm (2009), Fullen, Baxter, O’Donovan, Doody, Daly, & Hurley (2009), Phelan, van Ryn, Wall, M & Burgess (2009), MacNeela, Gibbons, McGuire & Murphy (2010), Williams, Maher, Hancock, McAuley, McLachlan, Britt, Fahridin, Harrison & Latimer (2010), Azevedo, Costa-Periera, Mendonca, Dias & Castra-Lopes (2013)…. OK I got tired of listing the many, many studies showing how deficient primary care of low back pain is. And that’s not even up to 2019!
Of course I could point the finger at many other health professionals as well – similar findings for physiotherapy, orthopaedic surgery, even pain services…
So WHY are unhelpful approaches so sticky? Why doesn’t practice change?
Me… wondering why
Here are my off the top of my head ideas (ideas based in reading a lot). Funding and policy for funding is, in New Zealand, governed by two main agencies: ACC (accidental injury) and Ministry of Health but devolved to local DHBs. Who sits on the decision-making committees? How many of these august people come from allied health backgrounds? What is the understanding of pain within these committees?
How do people get to be appointed to the committees and policy-making positions? Who makes those decisions? What are the hidden (and maybe not so hidden) vested interests within those groups? How many have holdings in medical companies? What exposure do these people have to evidence and to allied health?
Why do clinicians carry on with unhelpful approaches? I think there’s a lot to uncover: limited time, the push to replace face-to-face interaction with apps (when people really crave interaction!), lack of funding, fear of how to handle difficult conversations (possibly based on lack of training, but maybe because of a fear that the conversation will be misinterpreted – in turn, maybe that fear is because the clinician still holds a dualist model of pain), limited knowledge of what other clinicians offer, ties between companies stitching up who can be referred where, desire not to be different, and not to take more time….
Disheartened? Maybe it’s winter, but while there is a zeitgeist amongst physiotherapy believing that “we’ve reached a turning point” and aha! we will now move forward as enlightened pain rehabilitation beings! I’m inclined to look at the waves of change that have occurred over my clinical lifetime. The enthusiasm for multi and inter-professional treatments, the fervour for early intervention to prevent disability, the explain pain and it will lead to great outcomes… All good things, yet still the fundamental problem is, I believe, adherence to a mainly biomedical or biophysical model for what is a problem experienced by humans in all their myriad complexity. Until that reality is firmly fixed within the system (not just GPs!) I think change will be incrementally slow.
Either that, or I need to learn how to play the political game and get appointed to one or more of the decision-making committees in ACC, MoH and DHB-land.
Azevedo, L. F., Costa-Pereira, A., Mendonça, L., Dias, C. C., & Castro-Lopes, J. M. (2013). Chronic pain and health services utilization: is there overuse of diagnostic tests and inequalities in nonpharmacologic treatment methods utilization? Medical Care, 51(10), 859-869. doi:10.1097/MLR.0b013e3182a53e4e
Brownlee, S., Chalkidou, K., Doust, J., Elshaug, A. G., Glasziou, P., Heath, I., . . . Korenstein, D. (2017). Evidence for overuse of medical services around the world. The Lancet, 390(10090), 156-168. doi:https://doi.org/10.1016/S0140-6736(16)32585-5
Corbett, M., Foster, N., & Ong, B. N. (2009). GP attitudes and self-reported behaviour in primary care consultations for low back pain. Family Practice, 26(5), 359-364.
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 Vol 124(3) Oct 2006, 330-337.
Crawford, C., Ryan, K., & Shipton, E. (2007). Exploring general practitioner identification and management of psychosocial Yellow Flags in acute low back pain. New Zealand Medical Journal, 120(1254), U2536.
Darlow, B., Dowell, A., Baxter, G. D., Mathieson, F., Perry, M., & Dean, S. (2013). The Enduring Impact of What Clinicians Say to People With Low Back Pain. Annals of Family Medicine, 11(6), 527-534. doi:10.1370/afm.1518
Finestone, A. S., Raveh, A., Mirovsky, Y., Lahad, A., & Milgrom, C. (2009). Orthopaedists’ and family practitioners’ knowledge of simple low back pain management. Spine, 34(15), 1600-1603.
Fullen, B. M., Baxter, G. D., O’Donovan, B. G., Doody, C., Daly, L. E., & Hurley, D. A. (2009). Factors impacting on doctors’ management of acute low back pain: a systematic review. European Journal of Pain: Ejp, 13(9), 908-914.
Fullen, B. M., Baxter, G., Doody, C., Daly, L. E., & Hurley, D. A. (2011). General practitioners’ attitudes and beliefs regarding the management of chronic low back pain in Ireland: A cross-sectional national survey. The Clinical Journal of Pain, 27(6), 542-549.
Hush, J. M. (2008). Clinical management of occupational low back pain in Australia: what is the real picture? Journal of Occupational Rehabilitation, 18(4), 375-380.
MacNeela, P., Gibbons, A., McGuire, B., & Murphy, A. (2010). “We need to get you focused”: General practitioners’ representations of chronic low back pain patients. Qualitative Health Research, 20(7), 977-986.
Phelan, S. M., van Ryn, M., Wall, M., & Burgess, D. (2009). Understanding primary care physicians’ treatment of chronic low back pain: The role of physician and practice factors. Pain Medicine, 10(7), 1270-1279. doi:http://dx.doi.org/10.1111/j.1526-4637.2009.00717.x
Rice, A. S., Smith, B. H., & Blyth, F. M. (2016). Pain and the global burden of disease. Pain, 157(4), 791-796.
Somerville, S., Hay, E., Lewis, M., Barber, J., van der Windt, D., Hill, J., & Sowden, G. (2008). Content and outcome of usual primary care for back pain: a systematic review. British Journal of General Practice, 58(556), 790-797.
Sullivan, M. D., & Ballantyne, J. C. (2016). Must we reduce pain intensity to treat chronic pain?. Pain, 157(1), 65-69.
Webster, B. S., Courtney, T. K., Huang, Y. H., Matz, S., & Christiani, D. C. (2005). Physicians’ initial management of acute low back pain versus evidence-based guidelines. Influence of sciatica. Journal of General Internal Medicine, 20(12), 1132-1135.
Williams, C. M., Maher, C. G., Hancock, M. J., McAuley, J. H., McLachlan, A. J., Britt, H., . . . Latimer, J. (2010). Low back pain and best practice care: A survey of general practice physicians. Archives of Internal Medicine, 170(3), 271-277.
I’ve been interested in clinical reasoning and models used in clinical reasoning for quite some time. Occupational therapy has several models, including the “occupational therapy problem solving process” by Lela Llorens, the Model of Human Occupation by Gary Kielhofner, and the Canadian Model of Occupational Performance by Polatajko, Townsend and Craik in 2007. All of these models were designed to support occupational therapy clinical reasoning processes, and to capture the essence of what occupational therapy is about.
When it comes to pain rehabilitation, I’ve found the occupational therapy models a little lacking in specificity for my clinical reasoning. I’ve also noticed similar problems with proposed clinical reasoning models for physiotherapy when considering pain.
Here’s the thing: if pain involves so many factors (call them biopsychosocial for want of a better all-encompassing term), and we don’t know which factors are relevant for this person at this time, clinical reasoning in pain rehabilitation is complex. Why? Well the problem with pain is that it’s full of ambiguity. Not so much for the person experiencing them, but certainly for the clinician trying to help.
Bear with me a minute. To me, clinical reasoning models help shape the factors we include and those we omit.
In writing that sentence I realise I’m assuming something crucial: that models are designed to help us predict and control what’s going on. Is that the purpose of a model? I quickly did a search and found this definition: “In science, a model is a representation of an idea, an object or even a process or a system that is used to describe and explain phenomena that cannot be experienced directly. Models are central to what scientists do, both in their research as well as when communicating their explanations… Models are a mentally visual way of linking theory with experiment, and they guide research by being simplified representations of an imagined reality that enable predictions to be developed and tested by experiment.” It’s from here.
OK, so in clinical reasoning what utility does a model need? I think a model needs to generate hypotheses that explain the unique presentation of this person, their problems, at this time. A nomothetic representation of what might be going on for this unique person.
Occupational therapists and physiotherapists, and probably psychologists, are all concerned less about impairment (that’s damage or dysfunction at the body structure level) than we are about the impact this has on functional limitations and on participation. This doesn’t mean we’re not interested in impairment, but our focus is much more likely to be on “and what impact does that have on what you need and want to do”. Occupational therapists, in particular, are concerned about “and how does this affect the way you participate in our world”.
But if we look at clinical reasoning models in our various professions I think there are some gaps. I don’t think our models invite us to generate hypotheses because the various clusters of information don’t seem to link together in a terribly coherent way. Yet – with all the information around us, there are some causal (or bidirectional) relationships we can consider.
For example, we know that if someone is very fearful of their pain, they’re likely to describe elevated physiological arousal, and they’re not as inclined to engage in movements they believe will exacerbate their pain.
A line of reasoning goes from Fear -> Physiological arousal and Fear -> Avoidance.
This simple set of hypotheses generates some ideas about what might help. Firstly we’d test the presence of fear – is it just happening in this moment, or is it something that’s been present consistently? Mostly we ask the person, but we could use a questionnaire measure of fear of pain. We could also test for physiological arousal – is this present? How do we know? We could use various biofeedback devices, or we could simply ask (or use a questionnaire). And of course we can test for fear-avoidance as a combined construct via questionnaire and/or behavioural testing.
This set of steps really just determines whether our hypotheses are present, so now we need to generate some treatments. In this case, we also draw on research and think about providing information – this, we hypothesise, should reduce reported fear. So we embark on some explanations about what’s going on – and we should see a reduction of fear on a measure of pain-related fear. But perhaps not on avoidance because we know that behaviour change requires more than simply information. We might also help the person down-regulate their excitable nervous system, reducing that “fear -> arousal” relationship. And finally we might begin doing some exposure work which acts on reducing fear in the presence of doing something scary (movements) and so reduce the relationship between fear -> avoidance.
What the example above shows us is what might happen once we’ve identified some potential phenomena that may be present. What it doesn’t show, and something I struggle to find in many clinical reasoning models, is how clinicians identify those phenomena. Why would someone think to ask about fear of pain? Especially if we believe that our job is to help reduce pain and pain’s the only reason the person isn’t doing things. And even more – if we think our job is to deal with “physical” and fail to recognise the relationship between “physical” and “feelings, beliefs”.
You see, I think broad “groups of factors to consider” belongs in the assessment, but we need something more tangible when formulating an individualised explanation. We need to be generating hypotheses about how these various factors interact and lead to a presentation – and while much of this will be conjecture initially, by generating various hypotheses we can then go on to test them – and ultimately establish the priorities for treatment in collaboration with the person. That’s much easier to do when we’ve fleshed out why the person isn’t able to do what’s important to them, and we’ve synthesised all the known factors in some explanatory model.
Is this complex? Yes – but who said it had to be easy? This is why we do the work we do, because it’s complex and “common sense” doesn’t cut it. And if our various professions really want to adopt a sociopsychobiological framework for pain, maybe our clinical reasoning models need to synthesise all these factors in some coherent way rather than simply plonking the groups of factors down without integrating what’s known about the relationships between variables from different domains.
Wacker, J. G. (1998). A definition of theory: research guidelines for different theory-building research methods in operations management. Journal of Operations Management, 16(4), 361-385.
Yazdani, S., Hosseinzadeh, M., & Hosseini, F. (2017). Models of clinical reasoning with a focus on general practice: A critical review. Journal of advances in medical education & professionalism, 5(4), 177-184.
Self-management is all about the person living with their chronic health problem, learning how to maximise their wellbeing and limit the impact of their health problem on their life. The words might be well-known – but how self-management is best carried out, by whom, and when is a vexed question.
I stumbled upon a study carried out by Van Wely, Boiten, Verhoef, Eijckelhof, Van Hooft, Van Staa et al (2019) where, using Q-methodology (more about this shortly), they examined the beliefs about self-management of a group of Dutch physiotherapists.
First of all, why is this something to blog about on a blog about pain? My basic reason is that the only time we as health professionals can directly influence what a person does is when they’re in front of us. That might be about 30 – 60 minutes, maybe once a week if we’re lucky. The rest of the time that person is on their own. How closely the person follows what we’ve discussed in clinic depends on a whole bunch of factors, some of which are values (how important is health compared with everything else in that person’s life?), readiness to take action (maybe just thinking about it hasn’t yet moved to planning or doing), support or not from others, how well we’ve explained things (how many of us learned about teaching as part of our training?), confidence (are they worried they’re doing it wrong?) and so on. We’re a little inclined to believe that because we value health over other parts of life, so too does the person. And we’re familiar with what to do – but what we ask people to do can be very foreign and unfamiliar.
Living with persistent pain is a 24/7 7 days a week job. It doesn’t go on holiday, doesn’t switch off because you’re tired, doesn’t shuffle into the background because you have other things to do. I’ve referred to it as the ongoing burden of micro-decisions made every single moment of the day.
This means that knowing what helps, and what doesn’t, being able to decide what to prioritise in this moment on this day in this place, being able to communicate plans and negotiate with others, being “selfish” enough to prioritise what helps with wellbeing over what might feel important in the moment but drains.
So, turning to the study by Van Wely and colleagues, what did they find out?
Q-methodology is an approach to help establish correlations between participants’ beliefs and values by ranking a series of statements, and gradually reducing the list to one by forcing decisions about which statements to omit. Often there is an interview accompanying a Q-methodology sort, and in this case it was used to help participants explain their choices. 37 statements about self-management were sorted by participants into (1) agree (2) disagree or (3) neutral. The “agree” statements were then rank ordered starting from the right “strongly agree”, then moving to the left “strongly disagree” and finally, the neutral statements were sorted. For more information on q-methodology, this site is gold!
Statistical analysis was carried out using a by-person centroid factor analysis with varimax rotation. This process was used to identify the number of data-driven factors, factors representing people who sort the statements in a similar way to one another (ie they share similar beliefs). The qualitative material was then coded to identify topics related to self-management support, and clustered into themes which the authors then labelled.
39 physiotherapists were involved in this study, approximately 50% women, aged between 22 – 64 with an average age of 41 years. Most participants held a Bachelor degree, and the majority worked either in priamry care or nursing home settings.
Results – and what do they mean?
Three dimensions explained how the therapists ranked the statements – the physio’s role perception, the physio’s drive, and collaboration with the patient. The authors therefore coded the four perspectives (from the factor analysis) as (1) externally driven educator (2) internally driven educator (3) client centred coach and (4) client initiated coach.
(1) Externally driven educators thought self-management “ought” to be done to cut down health-care costs, or to reduce the need for clinical input. They thought of themselves as motivators and experts, and didn’t allow much autonomy for the person. Adhering to what is “prescribed” was important – while life goals were considered important, these physio’s thought treatment goals were more important.
(2) Internally driven educators thought self-management is best encouraged by identifying intrinsic motivation in the person, and support self-management by education within consultations. Unlike externally driven educators, they weren’t as motivated by healthcare system issues, and thought that self-management should be supported as an integral part of every session. These participants recognised the person’s autonomy and own expertise to find solutions, and also identified the need for them to obtain additional training to be able to provide support in this way.
(3) Client-centred coaches were influenced by their own internal drive for self-management support and focused on the person’s freedom to choose. Goals of reducing professional care and cost weren’t considered part of the equation, and they aimed to collaborate in a partnership with the people they were seeing. They believed in shared-goal setting, and thought they should be available when needed, but encouraged people to find solutions for their own problems. They particularly thought that healthcare reorganisation was needed to support this approach to healthcare.
(4) Client-initiated coaches also had an internal drive to support self-management but believed the person should ‘take the initiative’ to ask for help, and essentially passed the responsibility for maintaining self-management over to the person, rather than integrating either the environment or physiotherapy input. This group of participants thought distance technology would be useful to support people at a distance.
Overall, the physios in this study thought self-management was not a new concept, nor as something that was difficult or time-consuming. They recognised that self-management promotes the person’s freedom to choose – and that treatment should address the person’s needs so they could self-manage.
The authors were pleased that participants in this study thought of self-management as “business as usual”.
I thought it was interesting that the “educator” perspective was a strong theme. This tends to elevate the clinician above the person seeking help – although these participants did aim for shared decision-making mainly via providing education. I also thought it interesting that factors such as the need for healthcare reform and financial impact of self-management (to reduce cost) were important and I wonder what this study would look like in New Zealand where private practice physiotherapy, dependent as it is on (usually) ACC funding, might be less inclined to support an autonomous self-managing patient.
I think self-management is something all people with persistent pain engage in, whether it’s supported by clinicians or not. We don’t spend all our time “in therapy” which means the rest of our time is all about those decisions. Supporting people to be able to make thoughtful choices about what and how and when to do things that help promote well-being is, I think, something health professionals must do as equal partners. And I think it needs to be made explicit and part of every consultation. That means learning how to work alongside people, listen carefully to their priorities and values, help them develop skills to problem solve and find their own solutions – but most importantly, to have the confidence that people living with pain can make choices themselves.
Van Wely, L., Boiten, J. C., Verhoef, J., Eijckelhof, B. H. W., Van Hooft, S. M., Van Staa, A., & Roelofs, P. D. D. M. (2019). Perspectives of Dutch Physiotherapists on Self-Management Support: A Q-Methodology Study. Physiotherapy Theory and Practice, 35(4), 318-326. doi:10.1080/09593985.2018.1443182
Clinical reasoning is a cornerstone of evidence-based healthcare, in fact some would argue it’s the cornerstone of all healthcare. While there are many different processes, the ultimate purpose of clinical reasoning is to ensure the person seeking help has their needs identified then met, and the clinician has a basis upon which to decide which treatment they should offer.
The approach we use in clinical reasoning, including the information we prioritise and search for, and the way we synthesise the information to make sense of it will depend on the model we have to explain our treatment approach. For example, if we’re occupational therapists, we’re looking for information about the occupations the person wants and needs to do (identifying the person’s needs), and we search for information to help explain how and why this person is unable to manage their occupations at this time. Because occupational therapy is concerned with context – social, interpersonal and environmental, as well as looking at pathophysiological processes, we will also review psychosocial-spiritual factors (beliefs, attitudes, desires, interactions, values, etc) and the physical and social environment/s as part of our clinical reasoning.
But… there’s something missing from this picture of how we go about doing clinical reasoning: the very process of enquiring about “daily doing” (aka occupation) is likely to influence the person seeking help. There is a dynamic process involved in making sense of what’s going on between the clinician and the person. Some would call this “intersubjectivity” (Quintner & Cohen, 2016) meaning “a shared perception of reality between embodied agents… meanings expressed through performance and …perceived by others”, some would call it “embodiment” (Arntzen, 2018) meaning bodily aspects of human subjectivity and referring to my phenomenological body (the way I experience my body), and still others wouldn’t recognise it at all! I like to call it “meaning making” or the way that both parties make sense of what goes on in the “meet the therapist moment” as Benedetti (2011) puts it.
Much of the discussion about clinical reasoning refers to the way clinicians blend implicit/tacit knowledge (knowledge that’s so well-learned that it’s hard to state exactly what it is) with explicit/declarative knowledge (knowledge that we can articulate). Each profession has its own implicit body of knowledge that frames the way they approach the clinical problem. I think patients, or people seeking health care, also have implicit knowledge they bring to the clinical setting.
Some of the knowledge brought in from people seeking treatment is the inner sense that “something is wrong with me”. Without the sense that something is wrong, we don’t seek healthcare, and this can explain why problems like bowel cancer can go unnoticed until the disease is in an advanced state – because symptoms are either very subtle, or not present. With low back pain we know that for most people the sense that “something is wrong” is almost immediate, but may not evolve into treatment-seeking until the problem either doesn’t follow the typical path of recovery, or the pain begins to interfere with what’s important in daily life (Ferreira, Machado, Latimer, Maher, Ferreira, & Smeets, 2010).
We acquire the idea of “something is wrong with me” from personal experience (that queasy feeling just before you get seasick), from others around us (you’re looking really pale today, are you OK?), and from broader society (if your pain persists, see your health professional). But, from some of the qualitative studies I’ve been reading, I think we really start to notice and do something about our “something is wrong with me” intuition once we can’t do things that are important to us and help to define our sense of self (Darlow, Brown, Lennox Thompson, Hudson, Grainger, McKinlay & Abbott, 2018).
It’s clear to me that both the person seeking help and the clinician hold tacit knowledge, and that this knowledge/information is likely to influence clinical reasoning. And some of the implicit knowledge in both clinician and patient changes without either party recognising that’s what has happened.
Back to clinical reasoning and meaning making.
Something I noticed when developing my theory of living well with chronic pain was that many people with ongoing pain learn about the effects on daily doing by themselves (Lennox Thompson, Gage & Kirk, 2019). What I mean by this is they establish what they can and can’t do in mini-experiments (experiences) each day. This experimentation and experience is strongly influenced by the person’s interpretation of what the pain means – and the confidence they have to find ways to cope or deal with pain. Because so much of our knowledge about pain is based on acute pain that generally settles down quickly, it’s unsurprising that some interpretations of persistent pain go awry.
Given the impact of persistent pain is firstly on being able to do what’s important in a person’s life, it makes sense to me that our clinical reasoning should incorporate an understanding of what the person needs and wants to do. It also makes sense to me that we need to understand the person’s current perspective: their beliefs, assumptions and experience of what pain has interfered with. This doesn’t mean that the person’s perspective is 100% accurate with respect to what is going on in their body, because as I pointed out above, many of our beliefs about “what is wrong with me” are based on social constructs. Having said that, it doesn’t mean our clinical interpretation is any more “accurate” – it does, however, mean that until our perspectives align, we’re likely to have trouble developing a shared meaning of the problem. As Arntzen points out “there is a tendency in person-centered occupational therapy practice to consider only the patient-articulated experience and not the multiple layers of embodiment and co-construction of meaning within the therapeutic relationship” (Arntzen, 2018).
One form of clinical assessment, perhaps one that’s under-used, is as Arntzen (2018) describes, the ongoing dialogue between a clinician and the person as the person enacts movements or engages in occupations. This kind of meaning making involves physical and cultural contexts (I may visit a cafe with my client to see how she navigates the tables and people, how she stands and then sits while drinking her coffee, and how she moves from this location to her car); it involves conversations with her about what is going through her mind as she encounters these situations; I may change the location of our next session on the basis of interpreting her performance in this context, adapting my voice, my body language to convey my assessment of this performance.
At the same time, the person I’m working with is also making meaning of how she managed in this situation. From my nonverbal and verbal response to what she does, she may infer that I think she’s doing fine, or that I’m worried about her capabilities. You’ll notice that much of this implicit shared meaning making is not verbal – it’s inference, and may well be inaccurate.
I really like Arntzen’s description of the way clinician and person can work together to develop a shared understanding of “the problems” – I’m quoting it whole:
An embodied intersubjective reasoning can be about questioning how the patient senses their changed body during performance and what it means for his or her ability or obstacles to act, learn, and change. This mode of reasoning can help the occupational therapist problematizing the patients’ performance, capabilities, and possibilities as an interrelated process between action failure, lived habitual practice, and ongoing and shared meaning-making.
I also love this depiction of therapy: Therapy is a context- specific dialogue between two interpretive, embodied agents, in which the outcomes of their relationship are not given in advance (Arntzen, 2018).
How can all clinicians use this perspective?
While Arntzen is an occupational therapy commentator, and I have framed this post through an occupational therapy lens, I think there is much that other movement and doing-oriented clinicians can draw on. The “ambiguous body” is also core to much of physiotherapy: the person’s experience of being within a body with its attendant limitations, and the body through which goals and aims and life is lived. The ambiguity is particularly relevant in pain where “not being myself” dominates the person’s sense of self – because the experience of pain and movement renders familiar actions as different and needing more attention than usual, or failing where it hadn’t before. Doing is disrupted, and therefore “being” the person I know myself to be is also disrupted. The way the person experiences his body can be influenced by an empathic clinician, to help him recognise changes, or become aware of a return to familiarity.
Arntzen (2018) also refers to tools or the things we use during daily doing – the toothbrush, the car, the clothing we wear, the phone we use that now doubles as computer, camera, aide memoir. Although we can think of these things as “things” have you noticed that you talk about “my phone”, “my car” – and the choice of phone or car situates you in your social environment. If you’ve ever picked up another person’s phone by accident, it just doesn’t feel right even before you recognise that it’s not your own! Occupational therapists incorporate “things” as part of enabling occupation, as do physiotherapists who may incorporate walking aids, temporary splints, or use gym equipment as part of therapy. I think it’s worth considering how the person experiences these things – are they integrated into a sense of self? (think of those tatty neoprene wrist splints worn for months, if not years; and also ponder the gym equipment that still seems alien even after completing a six week rehabilitation programme).
Finally, the crucial element of what we attend to during therapy – and the things we focus on and draw the person to notice – is about our own embodied presence. Arntzen says “Through moment-to-moment interaction, the therapist can have an effect on what becomes foreground and what is background for the patient during the act. The therapist may support or hinder the patient’s habitual practice, or may facilitate or hold back the patient’s own capability to explore new strategies, develop compensatory techniques, and find alternative solutions” (Arntzen, 2008). I’ve often described this process when teaching about eliciting automatic thoughts during movements (eg riding a bike or walking over a slippery floor) – if we attend to “purity of movement” or biomechanics or some externalised idea of how someone ought to do something, we’re likely to elicit more of that and it may be unhelpful. If we collaborate with the person and interconnect we’re just as likely to learn from him as he is from us. I like Schell’s (2014) description of this form of clinical reasoning: ecological professional reasoning.
To conclude this lengthy post, I think too often clinicians have viewed their role as dominant, and what they say or ask the person to do as the primary therapeutic agent. I also think there’s a reason someone seeks help from a clinician. Relying only on one form of knowledge without integrating other forms (from the other person, using only language, being primary active agent etc) doesn’t seem to represent what actually goes on in therapy.
Many people with persistent pain learn what they can and can’t do on the basis of experiments that (often, at least in our most disabled people) lead to failure and recognising “I can’t do that any more”. Our approach has been to administer corrective exercises, experiences in moving differently, but we may well have forgotten both the contextual nature of doing and the experiential interpretation made by the embodied person. If we want to help people return to “feeling like themselves” maybe we need attend more carefully to the “what it is like” to experience this new experience, and then support the person to experiment in their own context. I’d call this knowledge translation, or perhaps occupational therapy.
Darlow, B., Brown, M., Thompson, B., Hudson, B., Grainger, R., McKinlay, E., & Abbott, J. H. (2018). Living with osteoarthritis is a balancing act: an exploration of patients’ beliefs about knee pain. BMC Rheumatology, 2(1), 15.
Ferreira, M. L., Machado, G., Latimer, J., Maher, C., Ferreira, P. H., & Smeets, R. J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi:http://dx.doi.org/10.1016/j.ejpain.2009.11.005
Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. doi:10.1080/09638288.2018.1517195
McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267–277. https://doi.org/10.1016/j.jclinepi.2013.08.015
Quintner, J., & Cohen, M. (2016). The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In Meanings of Pain (pp. 281-293). Springer, Cham.
I’ve had a strong interest in cannabis and pain seeing as so many of the people I’ve worked with who live with chronic pain talk about using it (it’s still illegal in New Zealand, though medical cannabis has just been legalised this year). This study is one of the growing number of studies beginning to examine the effects of cannabinoids on pain, and offers a tiny window into what might be happening. Note: the study was performed in collaboration with the cannabis producer, and one of the authors is an employee of this company. Although his role was only to comment on the protocol and final version of the paper, it’s worth noting this relationship.
The study question
In this study, the researchers were looking to understand the analgesic effect of inhaled pharmaceutical-grade cannabis as a plant rather than an extract, using four different varieties with known levels of THC and CBD. Three had active biochemicals, while one was a placebo and had neither THC nor CBD. They investigated the effects of these preparations on experimental pressure pain, electrical pain, and spontaneous pain (primary endpoints), as well as the subjective and psychotropic effects.
The participants were all women with rheumatologist-diagnosed fibromyalgia, a score on a numeric rating scale of more than 5 (where 10 = most pain imaginable), met the diagnostic criteria of the 2010 American College of Rheumatology, and therefore had a widespread pain index of greater than or equal to 7 (from 0 – 19); symptom severity score of greater than 5 (from 0 – 12), or a widespread pain index of 3 – 6, and a symptom severity score greater than 9. Participants were excluded if they had any medical, neurological or psychiatric illness, used strong opioids or other pain relief except paracetamol or ibuprofen, using benzodiazepines, or had any known allergies to the cannabis used. Other exclusion criterai included pregnancy, illicit drug or alcohol use, recent use of cannabis, breast feeding, and other pain problems apart from fibromyalgia. On the day of screening and each day of testing, urine was tested for illicit drug use. Comment: note that excluding anyone with psychiatric illness doesn’t describe whether this was current illness, illness controlled by medications – and if it doesn’t include these participants, suggests the participants are not our usual sort of person with fibromyalgia, given the high comorbidity of psychiatric illness with fibromyalgia.
Participants attended the centre five times, with the first visit being the screening session where they were also given an orientation to the experimental set-up (eg how to inhale). On subsequent visits, participants were given one of four different cannabis inhalations (in random order) with at least 2 weeks between visits. The vapour was generated using the Stroz and Brickel Volcanic Medic vapouriser which heats the plant material which is then collected in a balloon (made opaque for this study so participants couldn’t see the vapour). Participants had to inhale the vapour 3 – 7 minutes after the balloon was filled, and asked to hold their breath for 5 seconds after they’d inhaled.
Blood testing involved using an arterial line, and five ml of blood was obtained a T0 (before), 5, 10, 20, 30 , 40, 50, 60, 90, 120, and 180 minutes after the person started to inhale. This blood was analysed for CBD,THC, and its active metabolite 11‐hydroxy‐THC (11-OH-THC) plasma concentrations.
In addition, participants were asked to rate their pain on an 11 point visual analogue scale (from 0 = no pain to 10 = most severe pain imaginable), and to do this before inhaling, and at 1, 2, and 3 hours after. Two experimental pain tests were used: pressure pain test using an algometer to deliver pressure on a skin area of 1 cm square, between the thumb and index finger; pressure was applied until the person said it had become painful, and repeated three times at each time point of T 5 0 (baseline), 12, 22, 32, 42, 62, 92, 122, 152, and 182 minutes after the start of inhalation.
An electrical pain test was also used delivering a current via two electrodes placed on the tibial surface of the right leg, about 10 cm above the medial malleolus. The participants were required to indicate when they first experienced pain (threshold) and when the pain became unbearable (tolerance), and this procedure was repeated at T 5 0, 10, 20, 30, 40, 60, 90, 120, 150, and 180 minutes after the start of cannabis inhalation.
Finally, two questionnaires were also completed: the Bowdle questionnaire which is used to evaluate psychoactive aspects of cannabis use (eg psychedelic effects), and the Bond and Lader questionnaire which is used to establish the mental cloudiness and mood effects.
I won’t go into the blinding and allocation processes, but randomisation was computer-generated, and adequate steps were taken to ensure neither the investigators nor the participants were aware of the contents of the inhalation.
25 people were recruited, but five withdrew after the first study visits, and interestingly three did so because of dizziness and nausea (3/5) . These participants were replaced with another patient according to the protocol. Participanats were women, around 39 years old (+/- 13 years), weighing about 82kg +/- 20kg, and 169 cm (+/- 7cm). Their NRS pain score was 7.20 +/-1.24; and all had their fibromyalgia diagnosis confirmed. Widespread body pain of 13.9 =?-2.6, symptom scale of 9.2 +/-1.3, and 14.9 +/- 2.9 tender points. (note that tender points are still difficult to identify reliably, so this continues to be an area of discussion).
All three active preparations resulted in adverse effects. Yes – all three! These effects included coughing, sore throat and bad taste, feeling high, dizzy, and nauseous. Of course, two also reported feeling high after placebo, but there were no differences in the frequency of adverse effects between the active treatments, and it should be noted, no serious adverse effects.
Interestingly, none of the treatments had an effect greater than placebo on spontaneous pain scores or electrical pain responses. So it doesn’t look like cannabis is much help with the general spontaneous pain many people with fibromyalgia experience, and I hope we don’t go around electric shocking each other!!
BUT two preparations caused a significant increase in tolerance to the pressure applied to the skin over the adductor pollicis muscle for the duration of the study. The largest effect was observed for the cannabis variety that contained high doses of both THC and CBD, allowing an additional 11kgf at 20 – 90 minutes. Active treatments vs placebo showed significantly more patients (n = 18) responded to the CBD + THC preparation with a decrease in spontaneous pain by 30%, but only N = 9 achieved 50% which is not statistically significant. At both responder rates, all other treatments had response profiles not different from placebo. Spontaneous pain scores were strongly correlated with the magnitude of drug high.
Study author’s discussion
The authors point out that none of the treatment had an effect greater than placebo on spontaneous pain, but that compared with placebo, more people responded to the combined THC + CBD preparation than the other forms – and these others had response rates no different from placebo. The pain reduction scores for spontaneous pain correlated with how high participants felt. For pressure pain threshold, an increase in pressure was tolerated by people with two preparations with THC content, while the form with CBD did not have any analgesic effect.
What do I think?
As someone living with fibromyalgia, I’m always curious about treatments that may help reduce the burden of this disorder. Unfortunately, I don’t think cannabis, at least in these forms, is going to cut the mustard. While pressure pain threshold reduced, it didn’t reach the 50% reduction in pain that we really want, and I’m not sure pressure pain is the one I’m most concerned about. I’d love for my spontaneous pain to reduce and unfortunately this study suggested that I’d have to get high to do so. Might be great for pain, but not so great for being able to DO anything! The authors point out that “the pressure pain test seems especially suited for exploring treatment effects in FM pain, as it elicits mechanical muscle stimulation through A delta- and C fibre activation and better reflects the symptoms of patients with FM, but I’m not entirely convinced myself.
The numbers needed to treat for cannabis preparations are greater than 20 – what this means is that more than 20 people need to try cannabis for ONE person to obtain a benefit. Not only that, but from this study, 5 of the original 20 people withdrew because of adverse effects, with adverse effects being very common. You’d have to be prepared to cope with coughing, dizziness, nausea, and feeling high if you wanted to use cannabis in this way.
So, at this point I’m not an advocate of cannabis for the purpose of relieving the pain that people with fibromyalgia experience. While it’s appealing, the numbers needed to treat are very high, adverse effects common, and the fact that the analgesic effects were only experienced alongside feeling high makes me very cautious. More studies are needed!
van de Donk, T., Niesters, M., Kowal, M. A., Olofsen, E., Dahan, A., & van Velzen, M. (2019). An experimental randomized study on the analgesic effects of pharmaceutical-grade cannabis in chronic pain patients with fibromyalgia. Pain, 160(4), 860-869.
If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?
One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.
Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…
Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”
Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.
Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.
Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.
Now, how about some evidence for any of these approaches?
Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.
The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.
The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management
Cutting to the chase, what did they find?
Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”
I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.
So where does this leave us?
I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…
Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.
Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.
Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013
Trust – something that needs to be earned, or something that is present at first… and then erodes? Or perhaps, it’s a snap judgement we make on the fly – and judge everything else about a person on that basis?
Firstly, why even discuss trustworthiness in pain rehabilitation? Well, the answer is quite clear: I don’t know how many times I’ve been asked if I can tell whether someone is faking their pain. I’ve read numerous articles on functional capacity testing – and its poor predictive validity (or completely absent investigation of such properties). I’ve had case managers tell me they have a method for testing whether someone is faking or malingering… so trustworthiness is something those in the insurance industry seem to want to test. The same kinds of questions are made by employers: how can I tell whether this person is really that bad?
When we don’t believe someone, or we think they’re exaggerating, our level of empathy for that person drops, and our tendency to question their honesty increases (Ashton-James & Nicholas, 2016; Schafer, Prkachin, Kaseweter & Williams, 2016). As a result, people who don’t fit our preconceived ideas of who should or shouldn’t deserve empathy are stigmatised (De Ruddere & Craig, 2016; Stensland & Sanders, 2018). Stigma means people may not receive adequate analegsia (Wilbers, 2015), they may present as stoic and prefer not to reveal how they are feeling (Cagle & Bunting, 2017), and this in turn may lead to further lack of acceptance of that person’s own experience.
So, how is trustworthiness formed? Swenson, Weinstein, Junghaenel and Richeimer (2019) carried out an online study of pain narratives, ie depictions of pain from the perspectives of people seeking treatment. They had 727 participants in this study, 86% (n=626) individuals with chronic pain, and 14% (n=101) having a ‘medical’ background (we don’t know whether medical = health-training). The narratives were based on actual narratives from people living with pain who had responded to the Institute of Medicine (US) call for descriptions related to obtaining care for pain. They identified three narrative characteristics: apparent pain severity, apparent frustration with care, and apparent wish for more or better pain medication. They hypothesised that those describing high levels of pain, frustration with care or a wish for more or better pain medication would be associated with lower ratings of trustworthiness, while people living with pain would give higher ratings of trustworthiness compared with medical professionals.
Participants were asked to rate each vignette on the following characteristics: depressed mood, histrionicity, stoicism, appreciativeness, hostility, and likability. Participants were also asked to assess trustworthiness using the Physician Trust in the Patient Scale (Moskowitz, Thom, Guzman, Penko, Miaskowski & Kushel, 2011).
The results? “Narratives that were rated as depressed, hostile, or histrionic were rated as significantly less trustworthy by study participants (rs=−0.25, −0.44, and−0.43, Ps < .001, respectively). In contrast, pain narratives that were rated as appreciative, stoic, or likable showed a significant and positive relationship with ratings of trustworthiness (rs=0.48, 0.36, and 0.58, Ps < .001, respectively). The observed relationships between personality and psychological characteristics and trustworthiness were similar between patient peers and clinicians.” In other words, the more distressed the narrative the less trustworthy they were rated. So much for compassion for people who are so very often not able to get answers for their pain!
“Pain narratives that expressed a low or moderate level of pain severity received significantly higher trust ratings compared to those narratives that expressed a high pain severity level (t (1,585.15)=9.97, P < .001). Similarly, pain narratives that did not express frustration with pain care received significantly higher trust ratings compared to those narratives that expressed frustration with pain care (t(1,2894.02)=2.59, P=.009).” So, grateful patients are trustworthy, as are people rating their pain as low or moderate. Finally, “when no frustration with pain care was expressed in the narrative, patient peers and clinicians gave similar ratings of trustworthiness, whereas clinicians gave lower trustworthiness ratings than patient peers when frustration with pain care was expressed in the narrative (F(1,2857.31)=7.16, P=.008).” Clinicians clearly think patients should be grateful and satisfied with their care.
Now, I can hear clinicians reading this saying “Oh but not me!” “I would never…” – yet implicit biases exist in healthcare (FitzGerald & Hurst, 2017). Implicit biases are those we have without being aware of them (Holroyd, Scaife & Stafford, 2017). This makes it really difficult to decide whether we ought to take them into account and attempt to correct them, or whether it is just something to put up with. Philosophers Holroyd, Scaife and Stafford tackle this in their paper Responsibility for implicit bias. They break the question of responsibility down to three: Does the attitude reflect badly (or well) on the agent [person], is there a fault (or credit) that can be attributed? Should the agent [person] be regarded as blameworthy for the fault she has or has demonstrated, should she bear some cost or burden (in the form of sanction or blame) for this? And finally, What forward-looking obligations do individuals have for dealing with the fault or problematic behaviour?
Arguments for and against the first question suggest that because the person isn’t aware of their bias, he or she can’t really be held to account for what they do as a result of this. However, once that bias is drawn to the person’s attention, while he or she might still not be able to alter their tendency towards being biased, there is a responsibility to recognise the unfair situation that has arisen, and do something to correct it. Now, Holroyd, Scaife and Stafford’s paper is complex, lengthy and philosophical (tautology perhaps?!), and I’ve cut to the chase – but here’s the thing: we are aware that the way we perceive a person is judged within the first few seconds of meeting them. We’re also aware that we like people who are more like us than different from us. We think people should be grateful for our help, and that they should present as calm and pleasant when they seek it.
YET – many people who live with persistent pain have spent years trying to find appropriate help for their problem. They’re often frustrated, depressed, angry perhaps, and distressed. If we recognise that the people presenting in this way are often stigmatised and judged by others as less trustworthy, I think we ought to (because we know about it) take special steps to counter our tendency to be biased. Some practical things we could do:
Listen for commonalities between the person and ourselves
Recall people who are exceptions – perhaps those who present as distressed and who pull through and develop confidence in their ability to manage
Listen for the unique features of this person’s narrative. Break the stereotype and look for details that make this person special.
Perhaps take the time to ask yourself: what would I be like if I had lived through this person’s life?
Spend some time with people who are experiencing persistent pain. Listen to their stories. Hear their gripes.
Take your time – hurried interactions tend to elicit greater implicit biases.
As we’re emphasising right now in New Zealand, as a result of the terror attack on 15th March 2019, where 50 people died and many were seriously injury, we are one.
Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.
De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.
FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC Medical Ethics, 18(1), 19. doi:10.1186/s12910-017-0179-8
Holroyd, J., Scaife, R., & Stafford, T. (2017). Responsibility for implicit bias. Philosophy Compass, 12(3), e12410. doi:10.1111/phc3.12410
Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America, A Blueprint for Transforming Prevention, Care, Education, and Research, Washington (DC): National Academies Press (US), 2011.
D. Moskowitz, D.H. Thom, D. Guzman, J. Penko, C. Miaskowski, M. Kushel, Is primary care providers’ trust in socially marginalized patients affected by race, J. Gen. Intern. Med. 26 (8) (2011 Mar 11) 846–851.]
Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. d. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625.
Stensland, M. L., & Sanders, S. (2018). Not so golden after all: The complexities of chronic low back pain in older adulthood. The Gerontologist, 58(5), 923-931.
Swenson, A. R., Weinstein, F. M., Junghaenel, D. U., & Richeimer, S. H. (2019). Personality and treatment-related correlates of trustworthiness: A web-survey with chronic pain narratives. Journal of Psychosomatic Research, 119, 14-19. doi:https://doi.org/10.1016/j.jpsychores.2019.01.017
Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.
Each week as I sit to write a blog post, I think about what’s been happening in my world and in the world of pain rehabilitation. It struck me this morning that we’re often a bit like “Ooooh! Shiny!” with new toys and techniques and research to read… yet as so many people point out, the old biopsychosocial (sociopsychobiological) framework doesn’t seem to have seeped down very far, particularly when we look at undergraduate training about pain. It’s like an abstract concept until we meet face-to-face with how poorly our original training sets us up for complexity and messiness.
And clinical work is inherently complex, ambiguous, emergent. We work with incomplete information. We pin our hopes upon asking questions about what we hope the problem is, take histories from people who don’t know what we want to know about, use assessment techniques that are full of measurement error and attempt to derive a pattern amongst the noise so we can give the person a name for what is wrong. And we need this label so we know, the person knows, the funding agency knows – what to do next.
What might our training teach us to do? Under the pressure of cramming an enormous amount of information about normal and abnormal function, our training may teach us to quickly discard uncertainty so we can answer the examiner’s questions promptly. We are possibly led towards a linear, time-constrained interview process where people present as neat problem lists, and where uncomfortable imprecision, particularly with respect to – ewwww! – feelings, thoughts, beliefs, family relationships, mental health, drug and alcohol use, coping strategies – yes all those things inside Pandora’s box – is put aside to focus on the real, physical problem we can do something about.
I think this kind of process sets us up to constantly seek the next new thing. We’d like to know that something will work for people who we know, once we start working in the real world, just don’t conform to our diagnostic boxes. Secretly perhaps we’re hoping there will be some wand or sparkle dust that will turn pumpkins in royal coaches, Cinderella into a beautiful, smart, and endlessly compliant patient who gets better within time frames!
While our training might be, in part, responsible for this tendency to seek simple and shiny and new, perhaps the problem goes deeper than this. Perhaps it’s about who we choose to recruit in training – the straight A students who seem to get along with people reasonably well, and who don’t have “problems”. Perhaps it’s also about our post-graduation training (CPD) opportunities – largely fueled by the need to “show evidence” of ongoing learning – that primarily focus on simple techniques that can be taught in a weekend.
What does working with ambiguity look like? Are there models of treatment in healthcare where being OK with not knowing, perhaps discovering together with the person coming for help, where we can feel safe enough to say “I’m not ready to do anything to you until I’ve got to know you better”, or better still “I’m not ready to work with you until we’ve got to know each other better”.
What would it take to reveal some of yourself in the same way we expect our patients to? And what would that do to our relationship dynamics? And the sense of who has power and who doesn’t? Could we challenge our assumptions about who the expert is?
If we adopted a sociopsychobiological model, we might need to begin by acknowledging the complexity of human relationships. Starting with acknowledging that macro influences on assumptions we take for granted – and recognising the similarities and differences between people. We might prioritise learning about social systems, law, folkways and mores, “in” groups and “out” groups and how they work, and even review our beliefs about socio-economic status and why people might not prioritise their health.
Then we might need to reflect on psychological aspects of ourselves and others. That we have a finite amount of room for processing information so we use heuristics that reduce cognitive demand but also reduce what we pay attention to. That we, too, have emotions and assumptions and beliefs about how good we are as clinicians, and what it’s like for the other person to see us strutting our stuff.
And of course, the biological aspects underpin everything – our skin-covered anti-gravity suits through which we view the world. Still there. Still important, but filtered through the social and psychological.
Would this reduce the temptation to look for the next shiny new thing? I’m not sure – but it might broaden the range of shiny new things we’d look at. Perhaps we might become so fascinated by the sociopsychological that we’d recognise there is far more influence on what people do in these domains than we are currently trained to notice. And maybe we’d be a little less enamoured of the toys so temptingly offered at weekend workshops.
My response to comments is that at this time self-efficacy (confidence you can do things despite your pain) is really low. Self-efficacy, like love, isn’t a finite resource though, although the energy required to keep on coping (balancing all the multiple demands that persistent pain has on you) can exceed current capacity. Both self-efficacy and energy are renewable resources and change over time. Love expands as we add to it. Self-efficacy increases as we have more successes. Energy renews as we find ways to fill our buckets up faster than the holes leak it out.
This post was written for health professionals, health professionals who may be inadvertently undermining what little self-efficacy an individual has by promoting a focus on what they do, rather than on what the person is using to deal with their situation. Health professionals who may well be told they must record pain intensity before and after Every. Single. Treatment. Who may not recognise just how much effort it has taken for a person to come in for a session – especially when feeling guilty or ashamed that “homework” hasn’t been achievable.
I think pain heroes do need to be celebrated. All we hear about in the media are people suffering, wanting techno-fixes and ways to get rid of their pain without recognising that for many people pain reduction just is not possible. For those who are able to live well, why not applaud their efforts – I’m not talking about their ability to get rid of their pain, but their ability to remain focused on what gives their life value and meaning – even if that’s a small fraction of what they were able to do prior to developing their pain.
I get that sometimes “pain heroes” who do amazing feats are
held up as “normal”, but at the same time that’s not the story played out in
most of our general media, I wonder if it’s more like the stories bandied about
as examples of the latest new-fangled treatment. I often wonder if there were
long-term follow-ups carried out on those folks, would they still be as
positive as they were at the time their story was made?
Pain reduction as a goal doesn’t improve confidence to do activities successfully despite pain. Except in as far as a paper cut might not interfere as much with doing life as a migraine. At least some of the confusion arises from misinterpreting the measure: Pain Self Efficacy Questionnaire specifically uses the phrase “despite pain”, but I often hear people describe it as if it was “without pain”. Perhaps there needs to be a different measure “Self Efficacy Questionnaire for Doing Things With Only A Little Pain”, but currently the only measure of pain self efficacy is the one developed by Michael Nicholas.
I think it’s easy to misinterpret research about resilience as if it’s suggesting “thinking yourself out of pain” is the goal. It’s not. And that study in particular doesn’t say that, while neither did mine. In fact, “thinking yourself out of pain” isn’t achievable – good research suggests that attempting to suppress your attention to pain actually rebounds. It’s also not Pollyanna and pretending that pain doesn’t have an impact. What I think it is is a process of coming to grips with the fluctuations we all experience with pain and energy, recognising what we can and can’t do, being unafraid of our pain and knowing that it’s not going to kill us (though we may wish we could die from time to time), and finding small ways to go with our pain rather than fighting against it, wishing it wasn’t present, pretending it doesn’t have an effect when it does, trying to ignore it, or buckling underneath it and losing ourselves.
In the pain management services I’ve worked in, and the approach I take both for myself and with the people I try to work with, using pharmacological, neuromodulatory, surgical and procedural approaches to reduce pain has always been integral to the overall plan. Sadly I have not found anything that provides any pain reduction for me, I have no option but to keep going without anything. If there are things that reduce pain – and the side effects, adverse effects, or interference with the way you want to live your life are acceptable – that’s fantastic! The distinction I made in my post is the focus on pain reduction as the primary outcome. The sense that life cannot go on without pain reduction. The thing is, life does go on whether we’re part of it, or not (and of course we can choose not to go on, but that’s death, and not an option I’d ever recommend). So, one foot after another, life does go on. I’m arguing for more than a focus on pain reduction. Because that seriously is the only outcome considered by some professionals – and some people with pain. And in pursuing only pain reduction, people lose sight of what already is going on around them. Life goes on hold, and people spend all their energy, time, and focus on how to get rid of pain. That is not living.
Wouldn’t it be great if we had something for those who find
their pain overwhelms them. Sadly after working in this field for 30 years I do
not think we are any closer to that elusive goal than we were when I began,
except perhaps people aren’t going through quite so many useless and invasive
surgeries with really nasty side effects as they did in the 1980’s. Do you not
think there are so many people already seeking new and innovative treatments?
And what would you like to have happen to those who may never see any of those new treatments reach them? It does not have
to be an either-or situation.
What I’m finding is there is so much emphasis on pain reduction that few people are willing to provide what is already known to help people’s distress and disability. The unsexy, somewhat boring-but-necessary evils of self-regulation, reframing pain, setting teeny tiny goals, maintaining consistency, activity management, day in and day out exercise programmes, plodding through each small bump along the way. That is the reality for the many, many people who have, like you, not found anything wonderful to whisk the pain away. Demanding better treatments may not bear fruit in your life time. The only new class of analgesics are the triptans for migraine, and they came out in the 1960’s. Do you think there’s something hidden away for only “good” people? Seriously, there is SO much research being undertaken for all manner of wonderful treatments – but I haven’t seen much of this bear fruit in the way that you and all the other people who live with persistent pain would really like. Including me.
So, let me say, in case it wasn’t clear.
I am NOT suggesting there should be no medical interventions for people.
I AM cautious in terms of how successful they are (that’s me, the skeptic, been doing this for long enough to see the trendy things fail in the real world).
I AM suggesting it’s not worth putting life on hold in the hope that there MAY be something “just around the corner” because that’s not the case right now.
I AM arguing that clinicians who focus on pain intensity as the exclusive outcome that matters need to stop and think about what it is that people want to DO with that newfound energy if their pain did suddenly disappear.
Sometimes, in fact often, those things can be done with pain alongside. So it hasn’t happened in many people’s cases – that’s because pretty much nothing DOES work for everyone. But that doesn’t mean we should stop working really hard to continue to help people do what they can do, not letting what they can’t do get in the way of what they can.
And that is what I try to do both personally and professionally, as a person, clinician and educator.