coping strategies

When it hurts – but it’s important to keep doing


To date, despite years of research and billions of dollars, there is no satisfactory way to reduce pain in all people. In fact, our pain reduction treatments for many forms of persistent pain are pretty poor whether we look at pharmaceuticals, surgery, psychological treatments or even exercise. What this means is there are a lot of disillusioned and frustrated people in our communities – yet life carries on, and people do keep doing!

In an effort to understand what might help people who don’t “find a cure”, researchers and clinicians have been looking at mediators. Mediators are factors that explain a relationship between two variables. In the study I’m examining today, the predictor is pain intensity, and the criterion variable is participating in valued life activities (the things we want or need to do). The research question was whether self-efficacy and/or pain acceptance mediated engaging in valued life activities.

Ahlstrand, Vaz, Falkmer, Thyberg and Bjork (2017) used a cross-sectional study to explore relationships between the variables above in a group of people with rheumatoid arthritis (RA), drawn from three rheumatology registers in South East Sweden. Participants were required to have confirmed RA; be between 18 – 80 years; have had RA for four years or more; and have data included in the quality register – a total of 737 people agreed to take part (from a total of 1277 meeting entry criteria).

The researchers used the Swedish versions of Health Assessment Questionnaire (Wolfe, 1989) to establish degree of difficulty in daily activities, as well as the Valued Life Activities scale (Katz, Morris & Yellin, 2006); the Arthritis Self-Efficacy Scale (Lorig, Chastain, Ung, Shoor & Holman, 1989); and the Chronic Pain Acceptance Questionnaire (Wicksell, Olsson & Melin, 2009).
The statistical analyses included Chi-square tests of independence to identify significant differences in categorical factors due to gender, and steps were taken to establish whether there were gender differences for pain acceptance, self-efficacy and valued life activities. Pearson correlations were used to explore the relationships between acceptance, self efficacy and the valued life activities summary score, and then univariate regressions were undertaken to test each individual factor (eg pain, pain acceptance and self efficacy on valued life activities). Then, only the significant contributors in univariate analyses where entered into the hierarchical linear regression models. The tests were to establish whether self-efficacy would predict valued life activities after acceptance and pain scores were considered.

Finally, structural equation modelling was used to examine the contribution and influence of pain, activity engagement and self-efficacy on difficulties performing valued life activities. A note here: The authors used the structure of the ICF model to name the constructs in their structural equation model.

What did they find?

The people who responded to this survey tended to be less active than those who were on the registers but didn’t respond, so we need to keep this in mind when we interpret their results. They found that women reported slightly more pain than men, but there were no differences between men and women on all measures except that men scored more highly on the symptom control subscale of the self-efficacy measure. A point to note here is that, unlike the Pain Self Efficacy Questionaire, this measure includes attempts to reduce or control pain and/or disability, so it’s a slightly different construct from the PSEQ which measures confidence to engage in doing things despite the pain.

In terms of pain, pain acceptance, and arthritis self-efficacy, there were low to moderate associations between these and engaging in valued life activities. In fact, all pain acceptance and self-efficacy constructs measured in this study were associated with performing valued life activities. In other words, when people are confident, and willing to do things and engage in activities despite pain, the more valued activities they actually do. In fact, one of the more striking findings was a negative relationship between activity engagement and performing valued life activities – those with lower activity engagement scores reported great difficult engaging in what was important to them (not especially surprising given that both scales are about doing what’s important and getting on with life).

Now for the really geeky model: structural equation modeling found a rather complex relationship between all the variables – so complex I’m going to include the diagram.

What does it show? Well, there’s a relationship between pain intensity and valued activity engagement – the more pain, the less people do what’s important. BUT this is mediated by “personal factors” (remember the ICF labels). These personal factors are the pain acceptance activity engagement, self-efficacy for pain and self-efficacy for symptoms. Interestingly, pain willingness, the other subscale on the pain acceptance scale, wasn’t correlated.

Or is it surprising? To my mind there are some interesting conceptual issues with this study. Firstly, in a group that is self-selected and represents slightly more disability than those who didn’t respond, it’s not surprising that pain intensity and disability were correlated. This is something we see often pre-treatment in chronic pain settings. It’s also no surprise to me that the Arthritis self-efficacy scales were associated with valued activities, and with activity engagement – the arthritis self-efficacy scales ask “How certain are you that you can decrease your pain quite a bit?”; “How certain are you that you can that you can make a small-to moderate reduction in your arthritis pain by using methods other than taking extra medication?” amongst other questions. These suggest that pain reduction is a primary aim in arthritis management. The Chronic Pain Acceptance Questionnaire, however, is a very different beast. The Activity Engagement scale is about doing things that are valued (similar to the Valued Life Activity scale), while the  Willingness scale is about being willing to live life again despite pain – for example “I am getting on with the business of living no matter what my level of pain is.”; “It’s not necessary for me to control my pain in order to handle my life well.”.

While the authors argue that this study shows the value of self efficacy, stating “Active management promotes a sense of confidence, or self-efficacy, for dealing with pain that is associated with improved participation in daily activities and wellbeing.” I think the Arthritis Self-Efficacy Scale’s focus on controlling pain and other symptoms is incompatible with the constructs implied in the CPAQ. The ACT (Acceptance and Commitment Therapy) approach to pain is, as I’ve mentioned many times, a focus on engaging in valued activities irrespective of pain intensity – a more achievable goal for many than becoming confident to reduce pain as the ASES measures.

To their credit, the authors also indicate that men and women who continue to experience pain despite optimal medical treatment might benefit from strategies to increase their confidence to manage their own symptoms – but that a focus on pain control instead of participation despite pain is probably unhelpful. They go on to say that “by focusing on pain aceptance and activity engagement despite pain, self-management strategies may change the focus from pain control to a more flexible engagement in valued activities.” I couldn’t agree more – and I wish they’d used the Pain Self Efficacy Questionnaire instead of the ASES in this study. Maybe we need more discussion about appropriate measures in rheumatology research.

 

Ahlstrand, I., Vaz, S., Falkmer, T., Thyberg, I., & Björk, M. (2017). Self-efficacy and pain acceptance as mediators of the relationship between pain and performance of valued life activities in women and men with rheumatoid arthritis. Clinical Rehabilitation, 31(6), 824-834. doi:10.1177/0269215516646166

Katz PP, Morris A and Yelin EH. (2006). Prevalence and predictors of disability in valued life activities among individuals with rheumatoid arthritis. Annals of Rheumatology Diseases. 65: 763–769.

Lorig K, Chastain RL, Ung E, Shoor S and Holman HR. (1989). Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis & Rheumatism, 32(1): 37–44.

Wicksell RK, Olsson GL and Melin L. (2009). The Chronic Pain Acceptance Questionnaire (CPAQ)-further validation including a confirmatory factor analysis and a comparison with the Tampa Scale of Kinesiophobia. European Journal of Pain, 13: 760–768.

Wolfe F. (1989). A brief clinical health assessment instrument: CLINHAQ. Arthritis & Rheumatism,  32 (suppl): S9

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Do pain management programmes really influence “doing” in daily life?


Disability and coping are two of the most important targets in persistent pain management, along with distress and pain intensity (the latter perhaps being the most difficult to influence). A question, however, is whether existing measures of disability truly capture the activities or occupations that people most value. For example, if house cleaning is just not my thing, even if my functioning improved over the course of a programme, would I choose to spend that new capability on vacuum-cleaning or out there in the garden?!

The Westhaven-Yale Multidimensional Pain Inventory (MPI)(Kerns, Turk & Rudy, 1985)  is a true workhorse of pain management measurement: It’s a measure that provides, via the subscales, an estimate of the complex inter-relationships involved in pain-related disability and distress. Three profiles of coping approach have been derived from the MPI indicating “Adaptive Coping” – the person is likely to continue to improve and engage in living well if they carry on as they are; “Interpersonally Distressed” – the person is experiencing difficulties with relationships and is feeling unsupported by others around them; and “Dysfunctional” – the person is struggling with their pain, and both disability and distress can feel overwhelming.

But the disability components of the MPI don’t really indicate the kinds of activities that people might be passionate about – or those that are relevant to their lives. The items are about general activities people “typically” do – in a North American setting. I know they’ve been validated in many different populations but they still represent a general idea of activity and function rather than the unique and idiosyncratic occupations that people do. (What's the difference? An occupation is the unique way I perform the important tasks of my day - the way I dash around the house while simultaneously cleaning my teeth, getting the dogs outside, making sure the curtains are opened and the appliances off just before I head out the door! We could call this "getting ready for work" but the way I do it, and the way you do it is probably very different!)

Why is that important? Well, because people value different occupations differently, and because values drive motivation, a broad measure of disability may not capture the true value of a pain management programme. And this is why the Canadian Occupational Performance Measure (COPM) (Law, Baptiste, McColl, Opzoomer, Polatajko & Pollock, 1990) is often used by occupational therapists to establish exactly what it is a person wants to be able to do. Goal Attainment Scaling is another option.

The study

In this study by Persson, Eklund, Lexell & Rivano-Fischer (2017), the aims were to assess longterm changes in MPI profiles over the course of a year; to look at associations between “Adaptive Coper” profiles at follow-up and improvements in occupational performance; and to look at factors at baseline that might be used to predict changes over time. Participants were, as usual, attending a tertiary pain management centre at a University hospital. They took part in a 21 day programme (oh the luxury of time!), and were seen by a team working together (oh the luxury of a co-located team!) including a psychologist, physician, physiotherapist, occupational therapist and social worker (oh for interprofessional teamwork!). The measures taken at pre and post were the MPI, COPM, and background demographic details.

Now here’s where the analysis gets pretty technical: dropout rates and pre-treatment differences amongst the MPI profiles were analysed using Matt-Whitney U, Kruskal-Wallis, chi-squared and independent t-test. Cross-tabs were used to describe the distribution of the MPI profiles. McNemar’s test was used to assess changes over time on each of the four profiles, and ultimately the participants were grouped into four profiles: never AC (Adaptive coper); losing AC; gaining AC, and stable AC, and these groupings were used to analyse associations between changes in MPI profile and changes on COPM from baseline to follow-up. And this, folks, is why occupational therapists NEED to learn statistical analyses! Because they went on to use univariate and multivariate logistic regressions to see whether demographic factors would predict these profiles at follow-up, incorporating satisfaction and performance scores on COPM.

What did they find?

More participants started the programme with a profile of dsyfunctional or interpersonally distressed than adaptive coper – and at both discharge and follow-up the adaptive coping group increased to be the largest subgroup. 20% of the participants ended up in the “gaining AC” group, 11% the “stable AC” group, 6% formed the “losing AC” group, and 63% were never in the adaptive coping group at all. Not so terrific in terms of broad outcome measures, but pretty consistent with other programmes around the world.

On the more individualised outcome measure of the COPM, people in the never AC group showed least clinically relevant improvement, both the stable AC and gaining AC groups showed more improvement on occupational performance and satisfaction with performance than the never AC group, while the stable AC group improved more than the losing AC group in terms of occupational performance changes.

Long-term changes showed those who started as AC were more likely to stay that way over time, and baseline scores for occupational performance were significantly associated with being AC at follow-up – in other words, people who felt OK about what they could do in terms of occupation, tended to become more capable and less disabled over time as measured by the MPI. More importantly, those people who had higher baseline scores on occupational satisfaction were 1.3 times more likely to shift to the AC group over time. “Clinically relevant improvements on performance and satisfaction with performance at 1-year follow-up, in occupations prioritized by the participants, were associated with having an AC profile at follow-up.” (p. 6).

Confidence in doing important occupations breeds confidence in other parts of living with persistent pain.

What does this all mean anyway?

Well, importantly, people who shifted from one of the other profiles to adaptive coping over a year showed clinically relevant improvements in occupational performance and satisfaction with performance – the authors suggest these findings show improvements on and satisfaction with “doing and performing” important occupations. Not being classified into adaptive coping at any time was associated with least improvement in occupational performance and satisfaction. There is an association between “doing/performing” and “coping/adapting” that hasn’t really been studied. Perhaps starting with things people enjoy instead of beating them over the head with things they’ve never been interested in could improve pain management outcomes. Pain management programmes DO influence doing in real life – if real life doing is used as therapy!

The authors also point out that “30–47% of participants who did not show an AC profile at follow-up still showed clinically relevant improvements on occupational performance and on
satisfaction with occupational performance.” (p. 8) This suggests that the MPI coping profiles only represent one part of the outcomes that are important to individuals: occupation being the individualised daily doings that people value very highly, and pointing to the need to explore individualised outcome measurement in more studies. Given that patient-centred pain management is based on individual goals, using only generic measures is likely to give misleading outcomes about treatment efficacy.

 

Kerns IVRD,TurkDC, Rudy TE. (1985) West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Pain. 23:345–56

Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. (1990). The Canadian Occupational Performance Measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy. 57(2), pp82–7.

Persson, E., Eklund, M., Lexell, J., & Rivano-Fischer, M. (2017). Psychosocial coping profiles after pain rehabilitation: Associations with occupational performance and patient characteristics. Disability and Rehabilitation: An International, Multidisciplinary Journal, 39(3), 251-260.

Using more than exercise for pain management


In the excitement and enthusiasm for exercise as a treatment for persistent pain, I wonder sometimes whether we’ve forgotten that “doing exercise” is a reasonably modern phenomenon. In fact, it’s something we’ve really only adopted since our lifestyle has moved from a fairly physically demanding one, to one more sedentary (Park, 1994). I also wonder if we’ve forgotten that exercise is intended to promote health – so we can do the things we really want or need to do. Remembering, of course, that some people find exercise actually exacerbates their pain (Lima, Abner & Sluka, 2017), and that many folks experience pain as an integral part of their exercise (think boxing, marathon running, even going to a gym – think of the pain of seeing That Much Lycra & Sweat).

While it’s become “exercise as medicine” in modern parlance (Pedersen & Saltin, 2015; Sallis, 2009; Sperling, Sadnesara, Kim & White, 2017), I wonder what would happen if we unpacked “exercise” and investigated what it is about exercise that makes it effective by comparison with, say, activities/occupations that incorporate whole body movement?

One of the factors that’s often omitted when investigating coping strategies or treatments, especially lifestyle/self management ones, is the context and meaning people give to the activity. Context is about the when, where and how, while meaning is the why. Whether the positives (meaning, and values people place on it) outweigh the negatives (let’s face it, the lycra and sweat and huffing and puffing does not inherently appeal) are factors that enhance (or not) adherence to exercise and activity. One positive is a sense of flow, or “an optimal subjective psychological state in which people are so involved in the activity that nothing else seems to matter; the experience itself is so enjoyable that people will do it even at great cost, for the sheer sake of doing it”(Csikzentmihalyi, 1990, p. 4). I can think of a few things I lose myself in – reading a good book; fishing; paddling across a lake; photography; silversmithing; gardening…

Robinson, Kennedy & Harmon (2012) examined the experiences of flow and the relationship between flow and pain intensity in a group of people living with persistent pain. Their aim was to establish whether flow was an “optimal” experience of people with chronic pain. Now the methodology they used was particularly interesting (because I am a nerd and because this is one technique for understanding daily lived experiences and the relationships between variables over time). They used electronic momentary assessment (also known as ecological momentary assessment) where participants were randomly signaled seven times a day for one week to respond to a question about flow. Computationally challenging (because 1447 measurement moments were taken – that’s a lot of data!), although not using linear hierarchical modeling (sigh), they analysed one-way between group analyses of variance (ANOVA) to explore differences in pain, concentration, self-esteem, motivation, positive affect and potency across four named states “flow, apathy, relaxation and anxiety”. We could argue about both the pre-determined states, and the analysis, but let’s begin by looking at their findings.

What did they find?

People in this study were 30 individuals with persistent pain attending a chronic pain clinic. Their ages ranged from 21 – 77 years, but mean age was 51, and there were 20 women and 10 men (remember that proportion). People had a range of pain problems, and their pain had been present for on average 68 months.

The contexts (environments) in which people were monitored were at home, or “elsewhere”, and, unsurprisingly, 71% were at home when they were asked to respond. Activities were divided into self-care, work and leisure (slightly less time in work than in leisure or self care respectively).  The purpose of the activities were necessity (35%), desire (40%), or “nothing else to do” (18%). And most people were doing these things with either alone or with family, with very small percentages with friends, colleagues or the general public.

Now we’d expect that people doing things they feel so wrapped up in that nothing else matters should experience lower pain – but no, although this was hypothesised, pain intensity scores during flow trended lower – but didn’t actually reach significance. When we add the findings that concentration, self-esteem, motivation, and potency mean scores were highest in the flow state and mean scores were lowest in the apathy and anxiety states, we can begin to wonder whether engaging in absorbing activities has a major effect on pain intensity – or whether the value placed on doing the activities is actually the most important feature for people with pain. Interestingly, people felt their flow experiences while outside the home: this happened rather less often than being in the home, where apathy was most present. So… doing something absorbing is more likely to occur away from home, while remaining at home is associated with more apathy and perhaps boredom. Finally, flow occurred in work settings more than elsewhere, suggesting yet again that work is a really important feature in the lives of all people, including people living with pain. Of course that depends on the kind of work people are doing…and the authors of this paper indicate that people with persistent pain in this study have few places in which they can do highly engaging activities, even including work.

What does this mean for exercise prescription?

Engaging people in something that holds little meaning, has little challenge and may not be in the slightest bit enjoyable is probably the best way to lose friends and have clients who are “noncompliant”. I think this study suggests that activities that provide challenge, stimulation, movement possibilities, the opportunity to demonstrate and develop skill – and that people find intrinsically lead to flow – might be another way to embrace the “movement is medicine” mantra. I wonder what would happen if we abolished “exercises” and thought about “movement opportunities”, and especially movement opportunities in which people living with pain might experience flow? I, for one, would love to see occupational therapists begin to examine flow experiences for people living with pain and embraced the creativity these experiences offer for the profession.

 

 

Csikszentmihalyi, M. (1990). Flow: The psychology of optimal experience. New York: Harper Collins.

Lima, L. V., Abner, T. S., & Sluka, K. A. (2017). Does exercise increase or decrease pain? Central mechanisms underlying these two phenomena. The Journal of physiology, 595(13), 4141-4150.

Park, R. (1994). A Decade of the Body: Researching and Writing About The History of Health, Fitness, Exercise and Sport, 1983-1993. Journal of Sport History, 21(1), 59-82. Retrieved from http://www.jstor.org/stable/43610596

Pedersen, B. K., & Saltin, B. (2015). Exercise as medicine–evidence for prescribing exercise as therapy in 26 different chronic diseases. Scandinavian journal of medicine & science in sports, 25(S3), 1-72.

Robinson, K., Kennedy, N., & Harmon, D. (2012). The flow experiences of people with chronic pain. OTJR: Occupation, Participation and Health, 32(3), 104-112.

Sallis, R. E. (2009). Exercise is medicine and physicians need to prescribe it!. British journal of sports medicine, 43(1), 3-4.

Sperling, L. S., Sandesara, P. B., Kim, J. H., & White, P. D. (2017). Exercise Is Medicine. JACC: Cardiovascular Imaging, 10(12).

One-session instruction in pacing doesn’t work


If there’s one form of coping strategy that occupational therapists love, it has to be the idea of “pacing”. Of course, the concept of pacing is vexed: we don’t have a good definition that’s widely accepted so it’s difficult to know whether we’re doin’ it right, but the idea of chunking down the amount of activity carried out at any one time is widely used as one way for people to sustain activity involvement despite pain and fatigue.

Today I’m looking at an old paper (from 2016) where people with osteoarthritis (hip or knee) were given instruction in time-based activity pacing by an occupational therapist. Surprisingly, this was a three-arm randomised controlled study, where 193 people were randomised into tailored activity pacing, general activity pacing, or usual care. I say surprisingly because RCT’s are fairly rare in occupational therapy research in persistent pain, and nigh on impossible to get funding for (sigh).

The definition of pacing used in this study was “the regulation of activity level and/or rate in the service of an adaptive goal or goals” (Nielson, Jensen, Karsdorp & Vlaeyen, 2013) although the form of pacing offered by clinicians working in this field is still unclear. In this study, the “tailored” group underwent seven days of monitoring using an accelerometer, the results were downloaded, analysed and an individualised pacing plan developed by the therapists. The plan was intended to highlight times when the person had high or low levels of activity (as compared with their own average, and averages drawn from previous studies of people with the same diagnosis), and to point out associations between these activity levels and self reported symptoms. Participants were then provided with ideas for changing their activity levels to optimise their ability to sustain activity and minimise symptom fluctuation.

In the “general” pacing group, participants were given the same sorts of instructions, but instead of using objective data from their own activities, they were asked to recall their past situations and symptoms, and broad guidelines were given instead. Both groups had three sessions with comparable educational material.

In the usual care group, participants were instructed to carry on with their usual approach to activity, and were assessed at baseline, 10 weeks and six months, using the same assessment process as those in the experimental arms.

Outcome measures were fatigue, measured by the Brief Fatigue Inventory (Mendoza, Wang, Cleeland, Morrissey, Johnson, Wendt & Huber, 1999); and the 8-item PROMIS fatigue short form. Pain severity was measured using the pain subscale drawn from the WOMAC. Additional measures included the 6-minute walk test; the WOMAC physical disability short form scale; the Arthritis Self-Efficacy Scale; the CES-D depression measure, and various demographic and disease measures (joint space narrowing, osteophyte formation etc). Finally, to determine activity pacing adherence, the pacing subscale of the Chronic Pain Coping Inventory was used (Jensen, Turner, Romano & Strom, 1995).

What did they find?

Well, you may have guessed from the title of this post: although people given the pacing intervention said they benefited, and they changed the way they carried out daily activities, the results showed that although they did so, the only significant change on measures taken was for WOMAC pain, in which the people in the general pacing group reduced their pain over the first 10 weeks. BUT participants in the usual care group reduced their pain over six months!

What does this mean?

Should we all throw out the idea of paced activities? Should occupational therapists despair and go back to the drawing board?

I don’t think so, and here’s why.

I think targeting pain intensity is possibly the wrong outcome in a study like this. We already have a vast collection of studies showing that pain intensity and disability are not well-correlated. Pain intensity alone isn’t the main reason people stop doing things when they have osteoarthritis – it’s often fear that the pain signifies “bone on bone” and “wear and tear” and “cartilage disintegration” (Hendry, Williams, Markland, Wilkinson & Maddison, 2006). And we also know that people with osteoarthritis develop their own self-management strategies and that these focus on maintaining everyday social roles and valued activities (Morden, Jinks, Bie Nio, 2011). Values seem to help people engage in demanding activities, whether the demands are because the activities hurt, or they’re physically demanding, or they’re not our favourite thing to do (think vacuum cleaning when Mum is coming to visit!) (McCracken & Keogh, 2009).

Perhaps, by drawing attention to both activities and pain intensity, the therapists in this study created a situation where pain intensity became more salient to the participants. Perhaps, too, aiming to reduce pain doesn’t take into account the other values people may hold. For example, even if I’m sore I’ll rush around cleaning if I know my parents (or other visitors) are coming to visit. My pain intensity matters less than feeling embarrassed at an untidy house.

I think we need to revisit the aims of pacing activity. To me there are several reasons for having the strategy available when/if needed:

  1. If I want to work consistently at something that’s going to take a week or two to do. Example: I recently laid bricks under my cherry tree. I did this over three weekends because digging into really hard soil, heaving bags of sand, and placing the bricks is something that increases my pain quite a lot. Because I have other things to achieve over the weekend and during the week, and laying the bricks wasn’t a top priority, I chose to do about a metre square each day of each weekend.
  2. If I’m aiming to do something quite demanding – like go on a two-day tramp (hike). I’ll try to build my activity tolerance over similar terrain with similar loads in advance of the actual trip.
  3. If I really loathe the job and would otherwise avoid it… For example, vacuuming and mopping my floors. I’ll do a room at a time because I seriously do not enjoy housework!

Looking at activity management in isolation from what a person believes is important makes this strategy pretty unpalatable. Combine it with values, and we’re starting to see something that can be employed flexibly and when it’s workable.

 

Hendry, M., Williams, N. H., Markland, D., Wilkinson, C., & Maddison, P. (2006). Why should we exercise when our knees hurt? A qualitative study of primary care patients with osteoarthritis of the knee. Family Practice, 23(5), 558-567.

Jensen MP, Turner JA, Romano JM, Strom SE. (1995). The Chronic Pain Coping Inventory: development and preliminary validation. PAIN ;60, 203–16.

McCracken, L. M., & Keogh, E. (2009). Acceptance, mindfulness, and values-based action may counteract fear and avoidance of emotions in chronic pain: An analysis of anxiety sensitivity. The Journal of Pain, 10(4), 408-415. doi:http://dx.doi.org/10.1016/j.jpain.2008.09.015

Mendoza TR, Wang XS, Cleeland CS, Morrissey M, Johnson BA, Wendt JK, Huber SL. (1999). The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory. Cancer 85, 1186–96.

Murphy, S. L., Kratz, A. L., Kidwell, K., Lyden, A. K., Geisser, M. E., & Williams, D. A. (2016). Brief time-based activity pacing instruction as a singular behavioral intervention was not effective in participants with symptomatic osteoarthritis. Pain, 157(7), 1563-1573.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nielson WR, Jensen MP, Karsdorp PA, Vlaeyen JW. (2013). Activity pacing in chronic pain: concepts, evidence, and future directions. Clinical Journal of Pain, 29, 461–8.

Persson, D., Andersson, I., & Eklund, M. (2011). Defying aches and revaluating daily doing: Occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi:http://dx.doi.org/10.3109/11038128.2010.509810

Manage pain – or aim to cure? Why I’m committed to pain management


Prominent researchers, clinicians and commentators seem to suggest that aiming to help people live with their pain is aiming too low. That pain cure or at least reduction is The Thing To Do. It’s certainly got a bit of a ring to it – “I can help get rid of your pain” has a sex appeal that “I can help you live with your pain” doesn’t have. And I can recognise the appeal. Persistent pain can be a scourge for those who live with it; it can eat away at every part of life. Imagine waking up one day to find NO PAIN! Excited much?

So why do I keep hammering on about this not very glamorous, certainly very challenging and at times unrewarding area of practice?

Here’s the thing. Persistent pain is extremely common. Not only is low back pain responsible for the most years lived with disability globally (Hoy, Bain, Williams, March, Brooks, Blyth, Woolf, Vos & Buchbinder, 2012), painful disorders like osteoarthritis increase with an aging population, and post-surgical pain is a problem for ~ 12% of people undergoing hip replacement, between 20 – 50% women undergoing mastectomy, and we all recognise the pain after limb amputation (between 50 – 80%) (Reddi & Curran, 2014). In New Zealand one person in five experiences persistent pain that goes beyond three months…

And our treatments, whether they be pharmaceuticals, procedures, surgeries or even groovy new things like mirror therapy or graded motor imagery don’t guarantee complete pain relief for 100% of patients. In fact, each new wave of therapy provides some pain relief for some people some of the time. And we shouldn’t be completely surprised about this because our nociceptive system is extraordinarily complex – and needs to be active because without pain we’re not likely to live long…or prosper. In fact, I’ll go out on a limb here and suggest that our nociceptive system with associated thoughts, emotions and behavioural responses has built-in redundancy simply because it’s there to protect us against potential harm. And every body system has at least one disorder/disease/dysfunction, so why would we think our “pain” system is immune?

So why do I spend time learning about management when I could be focused on reducing pain?

Well one reason is my clinical orientation. I’m an occupational therapist at heart (true, warped by contact with psychologists and physiotherapists), but essentially I’m about helping people do the things they need and want to do in daily life. My tools of trade are first of all focused on helping people work out the occupations (activities) that make them feel like themselves and then helping them do those things – and secondarily, and as a result of this focus, on helping people deal with their pain experience. Sometimes the latter involves helping people develop awareness of exactly how much or how little of their body and life is taken up with pain, helping them develop “wiggle room” so they can feel they have a little more space to be who they are, helping them find new ways to do those occupations that make them feel like themselves so the pain doesn’t take up quite so much room in their sense of self. Sometimes I do focus on obvious ways that people respond to their experience that may actually be making that experience much more unpleasant than it needs to be.

Another reason for me is that with a primary focus on pain reduction, we can forget the reason people want pain reduced – which is to go on and live life. And when we’re unsuccessful at reducing pain – where do those people go for help? What does it feel like to seem to “fail” a treatment again? and again? Who helps those people have good quality of life when they feel demoralised, the treatment options are exhausted and the clinicians who so desperately want to help them have no more ideas?

And as I mentioned above – there are no absolute cures for most forms of persistent pain. Nothing in my reading of the research around the world suggests that researchers have hit upon a jackpot and found a way to eliminate persistent pain 100%. What that means is there are likely to be people who will never experience complete relief from their pain. And others for whom the treatment is unavailable because of cost, side effects, intrusion on life, or because the treatment violates their values.

And because there are people who need to live with persistent pain until we have a “universal cure”, researchers and clinicians still need to refine and innovate the pain management strategies that will need to be used.

I’m not the person to make the decision about whether pain reduction or pain management is the best option. That’s not my job as a clinician or a researcher – I’m there to help people weigh up the costs and the benefits of treatments, and examine how best we can help those who can’t get rid of their pain. The thing is: if clinicians don’t know that there are viable ways of living well with pain (or they reject these as inferior or second class in comparison with pain reduction or elimination) how will they support their patients to make their own decisions? Or will they neglect to offer the approaches they don’t know about? And what kind of a choice is that?

 

 

 

Hoy, D., C. Bain, G. Williams, L. March, P. Brooks, F. Blyth, A. Woolf, T. Vos and R. Buchbinder (2012). A systematic review of the global prevalence of low back pain. Arthritis & Rheumatology 64(6): 2028-2037.

Reddi, D., & Curran, N. (2014). Chronic pain after surgery: pathophysiology, risk factors and prevention. Postgraduate medical journal, 90(1062), 222-227.

Exercise? Who me? Yoga or physiotherapy or education…


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

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

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

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

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

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

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

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

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

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

 

 

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

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

Mulling over the pain management vs pain reduction divide


I’ve worked in persistent pain management for most of my career. This means I am biased towards pain management. At times this creates tension when I begin talking to clinicians who work in acute or subacute musculoskeletal pain, because they wonder whether what I talk about is relevant to them. After all, why would someone need to know about ongoing management when hopefully their pain will completely go?

I have sympathy for this position – for many people, a bout of tendonosis, or a strained muscle or even radicular pain can ebb away, leaving the person feeling as good as new. While it might take a few months for these pain problems to settle, in many instances there’s not too much need for long-term changes in how the person lives their life.

On the other hand, there are many, many people who either don’t have simple musculoskeletal problems (ie they’re complicated by other health conditions, or they have concurrent issues that make dealing with pain a bit of a challenge), or they have conditions that simply do not resolve. Good examples of these include osteoarthritis (hip, knee, shoulder, thumbs, fingers) and grumbly old lower back pain, or peripheral neuropathy (diabetic or otherwise). In these cases the potential for pain to carry on is very present, and I sometimes wonder how well we are set up to help them.

Let’s take the case of osteoarthritis. Because our overall population is aging, and because of, perhaps, obesity and inactivity, osteoarthritis of the knee is becoming a problem. People can develop OA knee early in their life after sustaining trauma to the knee (those rugby tackles, falling off motorcycles, falling off horses, running injuries), or later in life as they age – so OA knee is a problem of middle to later age. People living with knee OA describe being concerned about pain, especially pain that goes on after they’ve stopped activities; they’re worried about walking, bending and maintaining independence – and are kinda pessimistic about the future thinking that  “in 10 years their health would be worse and their arthritis would be a major problem” (Burks, 2002).

To someone living with osteoarthritis, especially knee osteoarthritis, it can seem that there is only one solution: get a knee replacement. People are told that knee replacements are a good thing, but also warned that knee replacements shouldn’t be done “too soon”, leaving them feeling a bit stranded (Demierre, Castelao & Piot-Ziegler, 2011). Conversations about osteoarthritis are not prioritised in healthcare consultations – in part because people with knee osteoarthritis believe that knee pain is “just part of normal aging”, that there’s little to be done about it, and medications are thought to be unpleasant and not especially helpful (Jinks, Ong & Richardson, 2007).

I wonder how many healthcare professionals feel the same as the participants in the studies I’ve cited above. Do we think that knee OA is just something to “live with” because the problem is just part of old age, there’s an eventual solution, and meanwhile there’s not a lot we can do about it?

When I think about our approach to managing the pain of osteoarthritis, I also wonder about our approach to other pains that don’t settle the way we think they should. Is part of our reluctance to talk about pain that persists because we don’t feel we know enough to help? Or that we feel we’ve failed? Or that it’s just part of life and people should just get on with it? Is it about our feelings of powerlessness?

In the flush of enthusiasm for explaining the mechanisms of pain neurobiology, have we become somewhat insensitive to what it feels like to be on the receiving end when the “education” doesn’t reduce pain? And what do we do when our efforts to reduce pain fail to produce the kind of results we hope for? And the critical point, when do we begin talking about adapting to living well alongside pain?

What does a conversation about learning to adapt to pain look like – or do we just quietly let the person stop coming to see us once we establish their pain isn’t subsiding? I rather fancy it might be the latter.

Here’s a couple of thoughts about how we might broach the subject of learning to live with persistent pain rather than focusing exclusively on reducing pain:

  • “What would you be doing if pain was less of a problem?” My old standby because in talking about this I can begin to see underlying values and valued activities that I can help the person look at starting, albeit maybe doing them differently.
  • “What do you think are the chances of this pain completely going away?” Some might say this is about expectancy and I’m setting up a “nocebic” effect, but I argue that understanding the person’s own perspective is helpful. And sometimes, when a person has persistent pain and a diagnosis like osteoarthritis, their appraisal is less about catastrophising and more about holding a realistic view about their own body. It’s not about the appraisal – it’s about what we do about this. And we can use this perspective to built confidence and increase the importance of learning coping strategies.
  • “If I could show you some ways to deal with pain fluctuations, would you be interested in learning more?” All episodes of pain that persists will have times when pain is more intense than others – flare-ups are a normal part of recovering from, and living with persistent pain. Everyone needs to know some ways of going with, being flexible about or coping with flare-ups. I teach people not to focus exclusively on reducing pain during these flare-up periods. This is because even during rehabilitation we don’t want to use pain as a guide (it can be a cruel task-master). We know that rehabilitation can increase (temporarily) pain while the body habituates to new movement patterns, the brain gets used to new input, and the homunculus gets redefined. It’s great to be able to teach strategies that increase the sense of safety, security and down-regulation that can be lost in the initial onslaught of pain.

To summarise, not all pain problems settle. We can help everyone to be more resilient if we begin talking about ways of coping with flare-ups even during subacute pain, particularly if we avoid an excessive focus on trying to avoid them. Instead, we can begin to help people feel confident that flare-ups always settle down, and that they can manage them effectively by using effective self management.

 

Burks, K. (2002). Health concerns of men with osteoarthritis of the knee. Orthopaedic Nursing, 21(4), 28-34.

Cohen, E., & Lee, Y. C. (2015). A mechanism-based approach to the management of osteoarthritis pain. Current Osteoporosis Reports, 13(6), 399-406.

Demierre, M., Castelao, E., & Piot-Ziegler, C. (2011). The long and painful path towards arthroplasty: A qualitative study. J Health Psychol, 16(4), 549-560. doi:10.1177/1359105310385365

Jinks, C., Ong, B. N., & Richardson, J. (2007). A mixed methods study to investigate needs assessment for knee pain and disability: Population and individual perspectives. BMC Musculoskeletal Disorders, 8, 59.

What to do with the results from the PCS


The Pain Catastrophising Scale is one of the more popular measures used in pain assessment. It’s popular because catastrophising (thinking the worst) has been identified as an especially important risk factor for slow recovery from pain (Abbott, Tyni-Lenne & Hedlund, 2010), for reporting high levels of pain intensity (Langley, 2011), and for ongoing disability (Elfving, Andersoon & Grooten, 2007). I could have cited hundreds more references to support these claims, BTW.

The problem is, once the PCS is administered and scored: what then? What difference does it make in how we go about helping a person think a little more positively about their pain, do more and feel more confident?

If you haven’t seen my earlier posts about the PCS, take a look at this, this, and this for more details.

Anyway, so someone has high scores on rumination, helplessness and magnifying – what does this mean? Let’s say we have two people attending the clinic, one has really high scores on all three subscales, while the other has low or average scores. Both have grumbly old low back pain, both have had exercises in the past, both are finding it tough to do normal daily activities right now.

For a good, general pain management approach to low back pain, and once red flags are excluded (yes, the “bio” comes first!) this is what I do. I establish what the person thinks is going on and ask if it’s OK to talk about pain neurobiology. Together we’ll generate a pain formulation, which is really a spaghetti diagram showing the experience as described by the person (I used guided discovery to develop it). I then ask the person what they’d be doing if their pain wasn’t such a problem for them, perhaps what they’re finding the most frustrating thing about their situation at the moment. Often it will be sleep, or driving or cooking dinner, or perhaps even getting clothes on (shoes and socks!). I’ll then begin with helping the person develop good relaxed breathing (for using with painful movements), and start by encouraging movement into the painful zone while remaining relaxed, and tie this in with one of the common activities (occupations) the person needs or wants to do. For example, I’ll encourage bending forward to put shoes and socks on while breathing in a relaxed and calm way. I’ll be watching and also encourage relaxing the shoulders and any other tense parts of the body. For someone who is just generally sore but doesn’t report high pain catastrophising, I will also encourage some daily movements doing something they enjoy – it might be walking, yoga, dancing, gardening, whatever they enjoy and will do regularly every day for whatever they can manage. Sometimes people need to start small so 5 minutes might be enough. I suggest being consistent, doing some relaxation afterwards, and building up only once the person has maintained four or five days of consistent activity. And doing the activity the person has been finding difficult.

If the person I’m seeing has high scores on the PCS I’ll begin in a similar way, but I’ll teach a couple of additional things, and I’ll expect to set a much lower target – and probably provide far more support. Catastrophising is often associated with having trouble disengaging from thinking about pain (ruminating), so I’ll teach the person some ways to deal with persistent thoughts that hang around.

A couple to try: mindfulness, although this practice requires practice! It’s not intended to help the person become relaxed! It’s intended to help them discipline their mind to attend to one thing without judgement and to notice and be gentle with the mind when it gets off track, which it will. I ask people to practice this at least four times a day, or whenever they’re waiting for something – like the jug to boil, or while cleaning teeth, or perhaps waiting for a traffic light.

Another is to use a “15 minutes of worry” practice. I ask the person to set a time in the evening to sit down and worry, usually from 7.00 – 7.15pm. Throughout the day I ask the person to notice when they’re ruminating on their situation. I ask them to remind themselves that they’re going to worry about that tonight and deliberately put that worry aside until their appointment with worry. Then, at 7.00pm they are asked to get a piece of paper and write ALL their worries down for a solid 15 minutes. No stopping until 15 minutes is over! It’s really hard. Then when they go to sleep, I ask them to remind themselves that they’ve now worried all their worries, and they can gently set those thoughts aside because they won’t forget their worry, it’s written down (I think worry is one way a mind tries hard to stop you from forgetting to DO something about the worry!). People can throw the paper away in the morning because then it begins all over again.

Usually people who score high on the PCS also find it hard to be realistic about their pain, they’ll use words that are really emotive and often fail to notice parts of the body that aren’t in pain. By noticing the worst, they find it tough to notice the best.  I like to guide people to notice the unloved parts of their body, the bits that don’t hurt – like the earlobes, or the belly button. I’ll offer guidance as to what to notice while we’re doing things, in particular, I like to guide people to notice those parts of the body that are moving smoothly, comfortably and that look relaxed. This is intended to support selective attention to good things – rather than only noticing pain.

Finally, I give more support to those who tend to be more worried about their pain than others. So I might set the goals a little lower – walking for five times a week, two days off for good behaviour rather than every day. Walking for five minutes rather than ten. And I’ll check in with them more often – by text, email or setting appointments closer together. It’s important for people who fear the worst to experience some success, so setting small goals that are achieved can build self efficacy – especially when I try hard to offer encouragement in terms of what the person has done despite the odds. So, if the person says they’ve had a real flare-up, I’ll try to boost confidence by acknowledging that they’ve come in to see me even though it’s a bad pain day, that they’ve tried to do something instead of nothing, that talking to me about the challenge shows guts and determination.

People who see the glass as half empty rather than half full are just people. Like you and I, they’re people who have a cognitive bias. With support, we can help people view their pain differently – and that process applies to all of us, not just those with high scores on the PCS.

 

Abbott, A. D., Tyni-Lenne, R., & Hedlund, R. (2010). The influence of psychological factors on pre-operative levels of pain intensity, disability and health-related quality of life in lumbar spinal fusion surgery patients. Physiotherapy, 96(3), 213-221. doi:10.1016/j.physio.2009.11.013

Elfving, B., Andersson, T., & Grooten, W. J. (2007). Low levels of physical activity in back pain patients are associated with high levels of fear-avoidance beliefs and pain catastrophizing. Physiotherapy Research International, 12(1), 14-24.

Langley, P. C. (2011). The prevalence, correlates and treatment of pain in the european union. Curr Med Res Opin, 27(2), 463-480. doi:10.1185/03007995.2010.542136

How do help someone change their beliefs about pain?


This post is my little attempt to educate clinicians! Some of you will know I really don’t like the term “pain education” or “educating” people. The reason doesn’t go back as far as the original definition of “educate” which is, according to the Online Etymology Dictionary “educate (v.) Look up educate at Dictionary.commid-15c., “bring up (children), to train,” from Latin educatus, past participle of educare “bring up, rear, educate” (source also of Italian educare, Spanish educar, French éduquer), which is a frequentative of or otherwise related to educere “bring out, lead forth,” from ex- “out” (see ex-) + ducere “to lead” (see duke (n.)). Meaning “provide schooling” is first attested 1580s. Related: Educated; educating.”In other words, educate means to “bring out, lead forth”.

Pain education is a buzz word right now. It’s not a new concept, but it certainly has been hitting the consciousness of a whole bunch of people who previously would have thought of pain either in terms of “oh it’s something to do with the tissues” or “if I can’t find the cause, it must be something in the person’s head”.  Learning about pain and the neurobiology of pain is an excellent thing, a wonderful first step for clinicians who may have missed out on learning this stuff in undergraduate training, and I’m not disrespectful of the need to know more. What I’m a lot uneasy about is thinking of pain education as a primary means for pain reduction, particularly when it’s carried out as “pain ed” where information is dumped without finesse.

We know that simply giving people information in order to change behaviour does not work unless the person is at the “preparation” stage of making a change.  In fact, mass media campaigns about back pain education haven’t been altogether successful despite an early study in Australia showing some really positive gains (Buchbinder, Jolley & Wyatt, 2001; Gross, Deshapnde, Werner, Reneman, Miciak & Buchbinder, 2012). Despite this, there have been numerous studies showing that there are positive gains if people experiencing pain are given good information about pain neurobiology (Louw, Diener, Butler & Puentedura, 2011; Louw, Diener, Butler & Puentedura, 2013; Louw, Puentedura & Mintkin, 2012; Moseley, Nicholas & Hodges, 2004). So… why am I so antsy about pain “education”?

Well, mainly because I think we’re often not trained to do “education” very well. We’re clinicians, we’ve spent years learning about our profession, but on the whole we haven’t been taught to teach – or even, truth to tell, how to help other people change their minds! With the exception of my psychology colleagues, I think most of us learned about what to tell people, rather than how to lead or guide people. And none of us like to be told what to do!

So… how do I go about helping someone think differently about their pain?

The first thing is, I’m not “educating”. The end result of “education” can simply be “Oh goody now I can get on with the real work”, “Yay! I’ve told them what to think, and now if they don’t get it, it’s their problem.” I think if we can change our language we might begin to approach this part of our therapy a little differently. If we aim to help people understand, think differently, reconceptualise or make sense of their experience we can begin to use a whole range of approaches to get to that end result. If we “educate” we might only think about the process of giving information.

How else can we help people think differently about their pain? I think it’s a process of helping people discover for themselves because we know this is a more successful process for learning than if we just give the answers. Think about kids – if we tell a kid how to ride a bike, they probably won’t be very good at riding even though they might know all about centrifugal forces, and inertia, and coordination and how a bike is made.  The reason we want to give information is that it might help give a kid more knowledge about what to think about when they’re riding – but it won’t change that they  need to hop on the bike to learn to ride it. Similarly, in helping people who are experiencing pain, we want people to be able to do things again – and while knowing more about pain might help reduce the fear from not knowing, but in the end people have to DO something differently to truly enact change.

How do I help someone discover for themselves? I begin by asking what people understand about their pain. I ask them what goes through their mind when they experience pain, what they think is going on and how they feel. I draw a diagram like the one below, and begin to fill in the gaps.

I will ask then what they think is going on – their theory – and add that into the diagram. I might ask what do they think that means for them? What do they think they need to do now? What would it mean if that was true? What would it mean if it wasn’t true? What would it say about them if it wasn’t true? How would they know if it was true?

I might ask about other experiences in the body, other sensations, things the person might not notice – maybe by saying “what do you notice in your shoulders? your breathing? your hands?” and so on. And then what these things mean as well. I’m primarily seeking information on the presence of sympathetic arousal (“stress response”) because this often presents at the same time as people experience pain – pain can be anxiety-provoking, so it’s a common reaction but often not noticed.

I include external factors – like what other people might have said, their response to the person’s experience – like advice, warnings, or even behaviours. When I think of other people I often separate “healthcare professionals”, “family”, and “work”, and sometimes include recent media campaigns that may have influenced how the person interprets his or her pain.

The resultant diagram can look a lot like this – but with the person’s own comments and phrases contained within each circle:

20160510_110132The idea behind listening and completing a diagram like this is to help me as a clinician to really hear what the person has been experiencing. We know all these aspects affect the experience of pain, but so often we go in with our own ideas about the problem, and fail to put together this complex web of interactions that help us answer the two questions:

  • Why is this person coming to see me in this way at this time?
  • What can be done to reduce both distress and disability?

My intention at the time I work through this diagram isn’t to change anything. It’s simply to listen and reflect what I’ve heard and to assemble that information in a way that makes some sense. It’s only after I’ve done this that I feel OK to begin to consider intervention/treatment priorities. For some people there is no point in trying to change what they believe – anything I say is likely to be countered by all these other things the person is hearing from everyone else. So instead I might begin by exploring movements and how these might be influencing what the person is focusing on. Or I might think about the impact or effect of avoiding things and talk through “what if” pain was less of a problem.

Sometimes I will address the thoughts and beliefs, basing my suggestions on looking at either the evidence that the belief is true – or the effect of that belief on the person’s experience. We might work out some small behavioural tests to see what happens if the person tries something out – maybe trying a movement they’ve avoided, just to see if their memory of how it was is accurate, or as bad as they recall.

When, and only when, the person indicates they want to know more about their pain, or they’ve found that their assumptions about pain don’t work out (because we’ve established some discrepancies between what the person thinks they’ve been told and their own experiences), then I can begin to go down the pain neurobiology education route – but it’s embedded in two important things:

  1. That they’ve indicated a need and readiness to know more, and
  2. I’ve already listened and tried to understand where they’re coming from

To my mind, doing anything before these two conditions are met is bound to be met with resistance, and risks being either ignored or rejected.

 

To summarise: giving information alone is not enough (usually) to help someone change their understanding of their own pain.

Some people don’t need to be given the whole pain education thing – what they want is to be heard and understood.

People learn more by doing, and if we want to help people do more (ie be less disabled and distressed by their pain) then we not only need them to know more, we need to help them DO more.

That means a lot less talking and a lot more doing.

Telling is less helpful than exploring together.

 

Buchbinder, R., Jolley, D., & Wyatt, M. (2001). 2001 volvo award winner in clinical studies: Effects of a media campaign on back pain beliefs and its potential influence on management of low back pain in general practice. Spine, 26(23), 2535-2542. doi:dx.doi.org/10.1097/00007632-200112010-00005

Gross, D. P., Deshpande, S., Werner, E. L., Reneman, M. F., Miciak, M. A., & Buchbinder, R. (2012). Fostering change in back pain beliefs and behaviors: When public education is not enough. Spine Journal: Official Journal of the North American Spine Society, 12(11), 979-988.

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2011). The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Archives of Physical Medicine and Rehabilitation, 92(12), 2041-2056. doi:http://dx.doi.org/10.1016/j.apmr.2011.07.198

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy Theory and Practice, 29(3), 175-194.

Louw, A., Puentedura, E. L., & Mintken, P. (2012). Use of an abbreviated neuroscience education approach in the treatment of chronic low back pain: A case report. Physiotherapy Theory and Practice, 28(1), 50-62.

Moseley, G., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. The Clinical Journal of Pain, 20(5), 324-330. doi:http://dx.doi.org/10.1097/00002508-200409000-00007

Self-managing chronic pain


I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.