Five things I learned about pain this year

  1. 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)
  2. 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 .
  3. 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).
  4. 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?”).
  5. 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.


Chronic Pain Assessment and Measurement

Ask anyone who has worked in chronic pain management for a while about assessment tools or measurement and you’ll see the eyes roll – how many assessment questionnaires do we need???

Firstly I want to clarify what I mean by assessment, and the difference between that and measurement.

Measurement is all about quantifying something – how much, how often, is there more of [x] than [y]? did [a] have an effect on [b]?

The problem in pain is that because pain is an individual, subjective, personal experience we can’t directly measure it. We have to extrapolate from something observable to something that can’t be seen. This means we are really measuring correlates of the pain experience rather than pain itself.

Pain assessment, on the other hand, is about learning more about the qualitative experience of pain.

In pain assessment, I am forming a ’rounded’ picture of the individual and the factors that may be associated with the experience, and hoping to answer the question I have of ‘why did this person present to me in this way on this occasion?’ I collect information over a range of domains including biophysical, psychological and social – and rely on other members of the team to help complete the picture through their assessments (I focus on psychosocial and functional).

What difference does it make?

  • Pain measurement is really helpful when trying to quantify improvement, difficulties, or to establish whether this person is more or less severely affected by their pain. Measurement is important when trying to determine whether an intervention has achieved anything (eg outcome measurement), or whether to provide a person with a certain type of treatment (eg will this person respond to anti-depressant medication?). Measurement on its own, however, won’t make any difference to your rapport, empathy or quality of your intervention. It won’t necessarily help you to understand where this person is coming from nor to prioritise your interventions.
  • Pain assessment should directly help you establish the beginning of a case formulation, or working hypotheses, about the factors that may be influencing this person’s presentation – and in doing so, should help you develop some understanding of how the problems have arisen, how they are affecting the individual, how they are being maintained, and what intervention priorities you may have.

What tools can you use for pain measurement and assessment?

Hmmmm! well there are literally 100’s of pen and paper and other measurement instruments in pain…where to start? Before I answer this, there are quite a few questions to ask yourself…

  • If you’re assessing an individual, you may not want to use any formal measurement tools – quite simply psychometric tests can’t provide you with anything more than what your patient/client is prepared to tell you. They are not X-rays of the mind! They simply organise information, may be a little more efficient at times than interview, and they should (if well-developed) be reliable (measure the same thing the same way each time they’re used), be valid (measure what they say they’re going to measure), and help you compare this person with other people who have taken the same questionnaire (provided the original group with whom you are comparing this person is somewhat similar to your client/person!).

In choosing questionnaires or measurement instruments, it’s important to ask yourself – what do I really want to find out? Why might I use a pen and paper tool when I could ask the question? What is the burden on the patient/client to fill out this questionnaire? Can I interpret it? What does it mean if I do interpret it? What does a certain score actually mean? Can it predict anything? I can use it as an outcome measure? How do I report the findings?

    Behavioural measures are not nearly as readily available, nor used, as pen and paper questionnaires. This is partly because they are time-consuming to do properly, and often involve recording the person using video or photographs, then reviewing and scoring. Training to complete behavioural measures accurately is essential to ensure inter-rater reliability (like calibrating any other measurement instrument!). The predictive validity of behavioural measures such as Functional Capacity Evaluations or Assessments has not been well-established, and it’s important to recognise that these measures are only an indication of what this person is prepared to do on this day, not ‘lie detectors’! There is no way to determine whether someone is ‘malingering’ or ‘faking’ or ‘symptom magnifying’ – and health providers should not allow themselves to try to make this type of determination, it probably belongs with investigators rather than in health.

    A great reference for assessments that may be used in pain, and including a wealth of information on concepts such as validity, reliability and so on is the Handbook of Pain Assessment (2nd Ed, 2001) Edited by DC Turk and R Melzack, published by The Guilford Press.
    This mighty tome contains 100’s of full versions of many of the assessment tools that have been used in pain and pain management. More importantly is the reference to the original articles for these tools. To be really ethical about using psychometric assessments and measures, it’s vital to read the original research, and subsequent published literature about the properties and normative data associated with the measure.

    I’ll write more about assessment and case formulation soon – keep coming back for more, or if you don’t want to miss, you can subscribe using the RSS feed above. If there is a specific assessment or measurement tool you’d like to learn more about, put it in the comments and I’ll do my best!

    Is chronic pain a diagnosis?

    Diagnoses provide clinicians and researchers with a way to classify and communicate sets of signs and symptoms. Often these clusters of symptoms are presumed to have some underlying similarity – either similar causal mechanisms, or response to similar treatments.

    However, they reduce the emphasis on individual differences between patients, and can cause clinicians to assume that a similar presentation (or group of signs and symptoms) have the same causes.

    A diagnosis is helpful when we talk to each other – making sure we use consistent terms and are talking about the same things. Diagnoses have limitations though:

    • They often make assumptions about cause and effect
    • They group together similarities rather than identifying what is unique to this person
    • They don’t tell us how signs and symptoms are affecting the person we are seeing

    In the case of persistent pain, often we don’t know what causes or maintains the experience of pain.

    There are many factors contributing to persistent pain and disability including biophysical, psychological and social. This means each individual is unique, and our treatments need to be tailored to suit.

    A case formulation refers to developing an individualised explanation of relationships between causal mechanisms and presentations in an individual.

    “Case formulation is an experimental, hypothesis-driven procedure in pursuit of a “clinical theory” (the problem formulation) which then acts to guide ongoing therapy” (Bruch & Bond, 1998). The aims of case formulation are to:

    • explain the onset and maintenance of a clinical presentation
    • form the basis of intervention hypotheses
    • tailor treatment to individual needs

    This process involves considerable time spent on assessment, because important decisions and interventions are involved that have long-term consequences for the patient.

    A case formulation approach is recommended in pain management, because the person we see in a clinic presents with many different factors influencing their life in many different ways – our treatments must appreciate the uniqueness of each individual.

    The model of chronic pain used influences the assessment and treatments offered

    The biomedical model looks only at biophysical factors in a health condition – and this can be very helpful when the mechanism of the problem is clear (e.g. a broken bone), and the treatment is similarly clear (e.g. immobilize the bone until healing is complete).

    In pain, acute or chronic, we have a very different situation – our knowledge of what contributes to the experience of pain, and the disability that develops as a result is still limited. We have to look beyond the biophysical, and include psychological and social factors. The relationship between these various factors, and the decision about which factors are important, is what assessment and discussion with the individual achieves.

    The specific factors to include in an assessment are developed from research, but the general domains include

    • Appraisals
    • Mood/Affect
    • Hypervigilance
    • Physiological response
    • Motor behaviours
    • Learning history
    • Culture
    • Environmental contingencies including family, significant others, litigation, financial, agencies
    • Iatrogenic influences including medications, investigations, procedures

    The relationship between each of these factors is the subject of both ongoing research, and will differ between individuals – it is this relationship that is the subject of assessment. And that is the subject for another post!