‘Pacing’ or Quota

Pacing, pacing, pacing – good, bad, or…?


There’s nothing that pain peeps seem to like more than a good dispute over whether something is good, or not so good for treatment. Pacing is a perennial topic for this kind of vexed discussion. Advocates say “But look at what it does for me! I can do more without getting my pain out of control!” Those not quite as convinced say “But look at how little you’re doing, and you keep letting pain get in the way of what you really want to do!”

Defining and measuring pacing is just as vexed as deciding whether it’s a good thing or not. Pacing isn’t well-defined and there are several definitions to hand. The paper I’m discussing today identifies five themes of pacing, and based this on Delphi technique followed by a psychometric study to ensure the items make sense. The three aspects of pacing are: activity adjustment, activity consistency, activity progression, activity planning and activity acceptance.

Activity adjustment is about adjusting how we go about doing things – approaches like breaking a task down, using rest breaks, and alternating activities.

Activity consistency is about undertaking a consistent amount of activity each day – the “do no more on good days, do no less on bad” approach.

Activity progression refers to gradually increasing activities that have been avoided in the past, as well as gradually increasing the time spent on each task.

Activity planning involves setting activity levels, setting time limits to avoid “over-doing”, and setting meaningful goals.

Finally, activity acceptance is about accepting what can be done, and what can’t, setting realistic goals, adapting targets, and being able to say no to some activities.

In terms of covering the scope of “activity pacing”, I think these five factors look pretty good – capturing both the lay sense of pacing, as well as some of the ideas about consistency and progression.

On to the study itself, conducted by Deborah Antcliffe, Malcolm Campbell, Steve Woby and Philip Keeley from Manchester and Huddersfield.  Participants in this study were attending physiotherapy through the NHS (yay for socialised healthcare! – Let’s keep that way, shall we?!), and had diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome.  They completed the questionnaire either while on a waiting list, or after completing treatment, as a way to generalise findings – so this isn’t a measure of change (at least, not at this point).

Along with the APQ (the Activity Pacing Questionnaire – original name huh?!), participants completed a numeric rating scale, the Chalder Fatigue Questionnaire, Hospital Anxiety and Depression Scale, Pain Anxiety Symptoms Scale, and the Short-Form 12.  Some lovely number crunching was used – hierarchicial (sequential) multiple regression models with five separate multiple regression models of the symptoms of current pain, physical fatigue, depression, avoidance and physical functioning.

One of the confusing problems with  measuring pacing is that people may vary their use of different forms of pacing, depending on their symptoms at the time. So in this analysis, factors like pain and fatigue could be a dependent variable (ie I use pacing techniques and feel less fatigued and I’m in less pain), or they could be a confounding variable (ie I feel sore and tired, so I use these techniques).  Needless to say, the statistical analysis is complex and I don’t have a hope of explaining it!

The results, however, are very intriguing. 257 people completed the questionnaires in full, from an overall number of 311 participants. About half had completed their physiotherapy, while the other half had yet to start (ie waiting list). As usual, more people with low back pain than other conditions, and 2/3 were female. On first pass through the data, to establish correlations for inclusion in the regression  models (did your eyes just glaze over?!), the findings showed activity adjustment was associated with higher levels of current pain, depression, and avoidance, and lower levels of physical function. Activity consistency was associated with lower levels of physical fatigue, depression, and avoidance. and higher levels of physical function. Activity progression was associated with higher levels of current pain. Activity planning was significantly associated with lower levels of physical fatigue, and activity acceptance was associated with higher levels of current pain and avoidance.

Then things changed. As these researchers began adjusting for other independent variables, the patterns changed – Activity adjustment was significantly associated with higher levels of depression and avoidance and lower levels of physical function as before, but after adjustment, the association with pain was no longer significant; instead, it was significantly related to higher levels of physical fatigue. Activity consistency remained significantly associated with lower levels of physical fatigue, depression, and avoidance, and higher levels of physical function, but became significantly associated with lower levels of current pain. There were now no significant partial correlations between activity progression and any of the symptoms, whereas activity planning retained its significant association with lower levels of physical fatigue. Activity acceptance lost its significant association with current pain but retained its significant association with higher levels of avoidance.

Ok, Ok, what does that all mean? Firstly – engrave this on your forehead “Correlation does not mean causation”! What seems to be the case is that different themes or forms of pacing are associated with different symptoms. The items associated with adjusting or limiting activities were generally associated with more symptoms. So the more pain and fatigue a person experiences, it seems the more likely it is for them to choose to limit or adjust how much they do. Pacing themes involving consistency and planning were associated with improved symptoms. Using path analysis, the authors identify that activity adjustment and activity consistency play the most important parts in the relationship  between pacing and symptoms.

The take-home messages from this study are these:

  • We can’t define pacing as a unidimensional process – it seems clear to me that different people describe pacing in different ways, and that this messy definitional complexity makes current studies into the use of pacing rather challenging.
  • It seems that avoiding activities, reducing activities in response to pain or fatigue – the idea of an “envelope” of time/energy that needs to be managed to get through the day – is associated with more severe symptoms. Whether people choose this approach only when their symptoms are severe, and revert to activity adjustment and consistency when in less discomfort is not clear (correlation does not equal causation!)
  • Planning activities seems to be associated with some improved symptoms and the authors suggest that planning activities in advance might help people avoid a “boom and bust” scenario. giving a better shape to the day, a greater sense of control and achievement. Then again, it could be that when people feel better, they’re more able to plan their day, and again this study doesn’t help us much.
  • Activity progression, where the overall amount of activity gradually increases over time, wasn’t associated with either more or less pain and fatigue. I think it’s time we had a good look at whether progression helps people – or doesn’t. Rehabilitation philosophy suggests that it “should” – but do we know?
  • And finally, activity consistency was the aspect of pacing that was associated with improved symptoms – and this is certainly something I’ve found true in my own pain management.

The authors maintain that describing pacing as a multi-faceted construct is the only way forward – clearly we’re not going to agree that “pacing is X” when five different forms of pacing were derived from the Delphi study on which the APQ is based. It seems to me that we could benefit from applying this kind of nuanced definition in more areas than just pacing in pain management!

Antcliff, D., Campbell, M., Woby, S., & Keeley, P. (2017). Activity pacing is associated with better and worse symptoms for patients with long-term conditions. The Clinical Journal of Pain, 33(3), 205-214. doi:10.1097/ajp.0000000000000401

Why does “doing exercise” work?


Bless all the physiotherapists in the world, they keep us doing exercises. And exercises are good because they get us doing the things we want to do in our daily lives. But how does it work?  This is not an exposition on exercise physiology – I’m not au fait enough with physiology to do that and there are many other people out there with vast amounts of knowledge giving us the benefit of their wisdom who have written at length about exercise and why it’s important. Instead I want to talk about some observations – and maybe pose some critical questions too.

For many years I’ve worked in a chronic pain management centre where people with chronic pain attend a three week intensive pain management programme. Staff members from outside the Pain Management Centre (we were located as an outpatient facility on the grounds of a rehabilitation hospital) always told us they could spot a person with pain the moment they saw them wandering from our building to the main cafeteria: people walking slowly, sometimes limping, but often just walking very slowly towards the cafe.

Over the course of the three weeks, this group of people would go from this slow amble to walking briskly and attending the hydrotherapy sessions, doing a daily exercise session (circuit-style); and in the final week of the programme, catching a bus to the shopping centre, purchasing food, coming back and preparing a shared barbecue for friends and family. What a turn-around!

Now, I said I wasn’t going to talk about physiology and I won’t, but I WILL point out that three weeks is not a long time. It’s so little time that it’s impossible for muscle length and strength to change significantly. And yet movements (measured using the six minute walking test and timed up and go) were quicker. Postures changed. People looked more alert and took more notice of the world around them. The question of how it is that this group of people could go from being recognisably “pain patients” to people who could do everyday activities has to be asked.

There are a couple of points to make before I do my thing. Firstly, while the people attending the programme were undeniably uncomfortable, clearly slow in their movements, and most definitely disabled, they weren’t, by usual measures “deconditioned”. In other words, they were of pretty average fitness – and indeed, many had been attending daily gym sessions at the behest of a case manager and under the supervision of a physiotherapist for months! At the same time they were not DOING much and felt extremely limited in their capabilities.

The second point is that although the programme had two “exercise” sessions each day, these were not high intensity sessions! The aim in most cases was to help people establish a baseline – or a reliable, consistent quota of exercise that they could do irrespective of their pain intensity. Most of the work within the exercise sessions was to help people become aware of their approach to activity, to modify this approach, and to then maintain it. Movement quality rather than quantity was the aim.

Here’s where I want to propose some of the mechanisms that might be involved.

  1. Humans like to, and almost need to, compare their performance with other people. It’s not something we choose to do, it’s an innate social bonding mechanism and whether we then modify what we do to match others – or deliberately try to do the opposite to mark out our own stance – we’ve based our behaviour on having observed what’s “normal” around us. And this applies even when people develop disability (Dunn, 2010), but perhaps more importantly, may well be fundamental to how we experience our world – and ourselves (Santiago Delefosse, 2011). When a group of people meet, their behaviour rapidly becomes more similar – similar gestures, similar body positions, and similar facial expressions. I wonder if one of the mechanisms involved in change within a group of people who live with chronic pain is this tendency to mirror one another’s behaviour.
  2. Having proposed that mirroring is one mechanism of change, why don’t groups of people with chronic pain ALL remain slowed and showing pain behaviour? Well, another mechanism involved in behaviour change is operant conditioning. When a group is performing exercise under the supervision of a “wise and caring authority” (ie a physiotherapist), many reinforcements are present. There’s the “no, that’s not quite the right movement” response, and the “oh you did it!” response. The “you can do it, just push a bit more” response, and the “if you can do that, how about another?” At the same time people are set quota or “the number of repetitions” to complete within a timeframe. Simply recording what is happening is sufficient to change behaviour – just ask someone who is on a diet to record their food intake for a week and you’ll likely see some changes! But add to this a very potent response from the wise and caring physiotherapist, and you’ll get warm fuzzies for doing more, and possibly cold pricklies if you don’t try.
  3. And finally, and possibly the most powerful of all, is the process of confronting feared movements – and doing them. Doing them without “safety behaviour” and doing them to specifically confront the thing that makes them scary. And doing them in many, many different settings, so as to alter the tendency to avoid them because they’re scary. A recently published systematic review and meta-analysis of graded activity (usually based on operant conditioning principles, and perhaps on cardiovascular fitness training principles) compared with graded exposure (deliberately confronting feared and avoided movements in a whole range of different contexts) found that graded exposure more effectively reduces catastrophising than just doing graded activation. This shouldn’t surprise us – one of the mechanisms involved in disability associated with nonspecific low back pain is avoiding doing things because people are fearful either of further injury, or of being unable to handle the effects of pain.

Where am I going with this post? Well, despite the face validity of exercise for reducing pain and disability, it’s not the physiological effects that first produce results. It can’t be because tissues do not adapt that quickly. What does appear to happen are a range of social-psychological processes that influence whether a person will (or won’t) do something. What this means is two things:

  • Physiotherapists, and indeed anyone who helps people do movements to reduce disability, really need to know their psychological processes because they’re inherent in the work done.
  • Becoming expert at analysing what a person wants and needs to do, and in being able to analyse then carefully titrate exposure to the contexts in which things need to be done is vital. That’s fundamental to occupational therapy theory, training and expertise.

 

 

Dunn, D. S. (2010). The social psychology of disability. In R. G. Frank, M. Rosenthal, & B. Caplan (Eds.), Handbook of rehabilitation psychology, (2 ed., pp. 379-390). Washington , DC: American Psychological Association

Lopez-de-Uralde-Villanueva, I., Munoz-Garcia, D., Gil-Martinez, A., Pardo-Montero, J., Munoz-Plata, R., Angulo-Diaz-Parreno, S., . . . La Touche, R. (2015). A systematic review and meta-analysis on the effectiveness of graded activity and graded exposure for chronic nonspecific low back pain. Pain Med. doi:10.1111/pme.12882

Santiago Delefosse, M. (2011). An embodied-socio-psychological perspective in health psychology? Social and Personality Psychology Compass, 5(5), 220-230.

Deconditioning? Or just not doing things any more?


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

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

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

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

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

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

So, what did they find?

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

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

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

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

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

What does all this mean?

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

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

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

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

 

 

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

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

Life seems but a succession of busy nothings – Jane Austin


We hold some very contradictory opinions about being busy. On the one hand, Socrates is reported to have said “Beware the barrenness of a busy life”, and on the other Dale Carnegie is quoted as saying “Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.”

Pacing, one of the cornerstones of “traditional” pain management, is intended to moderate both under-activity (avoidance) and over-activity so that important things can get done without running out of puff – or having an enormous flare-up of pain with subsequent crash into a jellied lump. Yet people who cope well with pain, and ourselves if we’re honest, are often guilty of doing more when we are highly  motivated to do something (or want to achieve a specific goal), and doing less afterwards so we can recuperate.

What is an optimal level of activity for a person living with chronic pain and why might this be important?

I’ll address the second question first. Fatigue is experienced by many people living with chronic pain. Fatigue is a term “used to describe a period of extreme tiredness, as a result of emotional strain, physical exertion, boredom or a general lack of rest and sleep” (Psychology dictionary) People living with chronic pain often develop a sense of fatigue as part of their pain, and some authors believe that not only is it because of disruption to the delta sleep phase (the deepest sleep we achieve), but also because some brain activity continues all the time as the neuromatrix processes potential threat from the painful parts of the body. This activity may result in changes to brain structure, although brain structures may actually cause some of this effect (Baliki, Geha, Apkarian & Chialvo, 2008; Wiech, Ploner & Tracey, 2008). The practical impact of experiencing fatigue is to reduce cognitive efficiency: it takes longer to solve problems, and even boring tasks can feel very difficult.

Some interesting facts: the effect of fatigue on performance differs depending on an individual’s beliefs about fatigue – there is a thing called “fatigue catastrophising” which, like pain catastrophising, means individuals unduly and negatively assess the effect of fatigue on their ability to do things. Being fatigued influences the ability to switch tasks from one task to another, fatigue reduces the ability to ‘change tack’. Interestingly, being bored increases the likelihood of experiencing fatigue. There is an optimal level of stimulation in which we operate. Stress, while initially increasing alertness, over time results in increased fatigue.

So in terms of the importance of identifying and developing an optimal level of activity, it seems that for people living with chronic pain, there might be a need to carefully work out just what level of activity is sufficient to avoid boredom but not so much as to stimulate unhealthy levels of fatigue.

And now, what is an optimal level of activity for a person living with chronic pain?

This question is a much more difficult question to answer, not only because “optimal” will depend a great deal on an individual’s satisfaction with his or her activity level, but also because it’s difficult to measure, definitions about activity level are unclear, and because there are many assumptions about activity levels that have been retained since the early operant conditioning model of pain was proposed by Fordyce. In this model, avoidance develops by reducing activity levels as a way to reduce pain (or prevent it from increasing), while over-activity is thought to occur when activity increases pain resulting in avoidance. Some research suggests that over-activity is an ongoing habit used by individuals who have always tended to be those that work long hours and remain highly engaged in activities they value.

There has been a lot of interest in the notion of over-activity, in part because of the recent interest in “pacing”, but also because people who “over-do” exhibit some features inconsistent with the old avoidance model. For some reason people who over-do engage in activity that will increase their pain – and yet they continue doing so, despite the need to “recover” or do less on the days following their high activity days. Something is overriding the (expected or usual) sense of concern about experiencing pain at the time of their over-activity.

A study by Andrews, Strong and Meredith (in press) looks at activity patterns and particularly over-activity and avoidance patterns and has been able to validate the construct of “over-activity” as a pattern of activity that increases pain – but inconsistent findings relating to avoidance and over-activity. While pain is known to increase, the effect of this on future activity levels is not yet known.

What I wonder is whether these patterns relate to contextual aspects of activity carried out by people living lives. We all know that we push ourselves some days and chill out a little on others. We know that sometimes we’ll do things that will be either fatiguing or actually generate pain (like when you need to move house, dig the garden in spring, do a fun run, have a Christmas dinner at our place), and for most of us this is something we accommodate by being a little less busy for a couple of days afterwards. If we take actigraph recordings over a week or two (Jawbone anyone?), I’m sure it will also show a pattern of high activity and then lower activity, so that over time the activity levels probably flatten out around a mean level of activity. When we do something we value very much, the perceived sense of effort (fatigue) may be lower – we feel energised and enthused although we are tired. When we do something we don’t value (for me it has to be vacuuming!), it feels more tiring and time goes very slowly.

I wonder if people living with pain need additional time to “recover” because of both increased pain, and also the feeling of fatigue. And whether perhaps we need to also study what it is about the tasks being undertaken that is valued rather than simply the task activity level. Busyness may depend on the value of what is being done.

 

Andrews, N.E., Strong, J., & Meredith, P.J. Overactivity in chronic pain: Is it a valid construct? Pain.

Baliki, M.N., Geha, P.Y., Apkarian, A., & Chialvo, D.R. (2008). Beyond feeling: Chronic pain hurts the brain, disrupting the default-mode network dynamics. The Journal of Neuroscience, 28(6), 1398-1403. doi: http://dx.doi.org/10.1523/JNEUROSCI.4123-07.2008

Wiech, K., Ploner, M., & Tracey, I. (2008). Neurocognitive aspects of pain perception. Trends in Cognitive Sciences, 12(8), 306-313. doi: doi:10.1016/j.tics.2008.05.005

Routines, habits, boredom & variety: Life skills for living with chronic pain?


I’ve just had a wonderful week on holiday. I escaped the internet, social media, telephones, power, flushing toilets, running water… and it was awesome! There’s something good about taking a break from my usual world to do things completely differently. Now that I’m back I’m reflecting on routines and habits, and how they form an important part of my life.

Routines are sets of behaviours (occupations if you know occupational science) that regularly occur in a certain sequence. Habits are behaviours or occupations we do without needing to directly think about them – maybe because we’ve done them so often they’ve become semi-automatic. Both routines and habits are useful because they reduce the demand on our attention and therefore draw less on our cognitive resources.

This can be a good thing – who would want to have to think about every single thing we have to do to get up and off to work each day?

One of the things people working in chronic pain management often discuss with those they see is how to manage activity levels so that important things can get done without leaving the person feeling exhausted, flaring up their pain, or omitting to do things they value. Activity pacing is one of the main strategies discussed, and although the evidence base for this strategy is skinny, it’s a very common approach. BUT, and it’s a big BUT, it requires people to plan and organise both what they want to do, and how and when they do them.

Many people would think this is pretty self-explanatory. Who doesn’t sort out a To Do list and prioritise what needs doing in a day or week?

Ermmm – actually, there are plenty of people who don’t do this regularly. That’s why one of the most common tools in business is time management! Remember the Day Runner Diary? The Four Quadrants (Steven Covey) Approach? The ABC of prioritising? All tools used to organise what does and doesn’t need to be done.

While these tools are readily used in business, it’s rather less often that we think about helping people organise their lives outside of the workplace. I guess this is because most of us think this just happens naturally – intuitively, if you will. Intuition, though, can be defined as “over-learned habits” that we have learned so well we’ve forgotten we ever needed to learn them in the beginning.

The field of habits and routines is part of self-regulation. Self-regulation includes these components, but also incorporates the ways we raise our energy, calm ourselves down, maintain time awareness, set our sleep/wake cycle, and manage emotions.  Self-regulation theory has been proposed as a model for helping people with some forms of chronic pain cope more effectively with their pain and fatigue (Sauer, Burris,  & Carlson, 2010). There’s some neurobiological evidence to show that some forms of chronic pain, notably fibromyalgia, have greater connectivity and baseline activity between regions of the brain involved in self-regulation including the really important parts involved in executive functioning. This means things like switching attention from one thing to another, or responding to threat appropriately (then settling down afterwards) are more difficult.

And some people are born with, or perhaps develop, less effective self-regulatory neural processes – these are perhaps the people who seem to forget deadlines, arrive late, don’t take medications at the right time, perhaps don’t have regular meals, maybe run out of ingredients (or clean clothes!), and generally find it more difficult to get their life together.

Self-regulation treatments are often concerned with ways to down-regulate breathing, heart rate, and to manage attention. Habits and routines, on the other hand, are larger chunks of behaviour that might not be addressed. Maybe this is why some people forget to do their CBT thought records and don’t do the exercises they’re meant to do. As clinicians, we can think these “forgettories” are a sign of noncompliance, lack of motivation, or not really understanding the importance of the things we ask them to do. I suggest that maybe, for some people, it’s more about failing to have some of the foundational skills needed to get organised into a routine so that there’s enough brain space for people to add new tasks into their day.

What to do about this?

I think we can draw from three main sources of literature here. The first is self-regulation theory where people like Nes, Roach, & Segerstrom (2009), Sauer, Burris & Carlson (2010) are looking at some really useful models. By helping people develop mindfulness, relaxation skills, and awareness of internal physiological states, greater ability to self-regulate is developed. But this only addresses the internal states – what about the bigger chunks?

The next source of literature is probably that from mTBI, or post-concussion rehabilitation. One of the features of post-concussion syndrome is difficulty switching attention, becoming fatigued, recognising when and how to stop or slow down. There are plenty of fun games (yes, even Lumosity!) that can be used to help people develop greater cognitive flexibility, memory, and to improve concentration, attention and so on.

But this still doesn’t address the bigger chunks of activity we need to do. So here’s where I think occupational science and occupational therapy might be really useful: all the tools of time management, cognitive props like using a cellphone alarm to remind you to take medications, daily planners, post-it notes, identifying values and using these to prioritise tasks, having a diary, writing lists – all of these can help, provided they’re tailored to the individual’s needs and lifestyle.

So, before you think that habits and routine are boring, and that planning removes variety – or that the person you’re working with who just doesn’t do those exercises is really Just. Not. That. Motivated. Maybe it’s to do with not being all that great at habits and routines or self-regulation, and maybe you can help them get better at these foundation skills.

 

Clark, F. (2000). The concepts of habit and routine: a preliminary theoretical synthesis. Occupational Therapy Journal of Research, 20(Sup 1), 123S-137S.

Nes, Lise Solberg, Roach, Abbey R., & Segerstrom, Suzanne C. (2009). Executive functions, self-regulation, and chronic pain: A review. Annals of Behavioral Medicine, 37(2), 173-183. doi: http://dx.doi.org/10.1007/s12160-009-9096-5

Sauer, Shannon E., Burris, Jessica L., & Carlson, Charles R. (2010). New directions in the management of chronic pain: Self-regulation theory as a model for integrative clinical psychology practice. Clinical Psychology Review, 30(6), 805-814. doi: http://dx.doi.org/10.1016/j.cpr.2010.06.008

Whiteford, G. (2007). Artistry of the everyday: connection, continuity and the context. Journal of Occupational Science, 14(2), 77-81.

Wiese, Dunn W. (2000). Habit: What’s the brain got to do with it? Occupational Therapy Journal of Research, 20(Sup 1), 6S-20S.

Pacing – Activity management concepts (a longer than usual post)


In the literature recently there’s been a flurry of activity around pacing as a concept. When I first wrote about pacing I couldn’t find very much that had been published, and I ended up writing something that made sense to me at the time. Today I hope to add to that by summarising a few of these recent papers, and discussing some findings from my PhD research.

Firstly, what is pacing?

Pacing isn’t well-defined. In one of a few recent papers on pacing, Nielson, Jensen, Karsdorp, & Vlaeyen (2013) suggest that pacing should be defined as “…the regulation of activity level and/or rate in the service of an adaptive goal or goals” (p. 465).  Gill & Brown (2009) point out that because pacing is poorly defined, and despite the term being used widely and most especially in the mid 20th century (and related to the “3 P’s” of planning, positioning and pacing used for rheumatoid arthritis), there are a diverse range of articles mentioning pacing, but no consensus as to what it might include.

Jamieson-Lega, Berry and Brown (2013) scanned the literature and sought feedback from stakeholders from a range of disciplines, and developed a concept map for the term. Concept mapping involves identifying the use of the concept in the literature, defining the attributes of the concept and developing a model case (a “pure” example), and both borderline and contrary cases (incorporating none or only some of the concepts). Antecedent and consequent outcomes associated with the concept of pacing were also defined, and empirical referents, or phenomena that show how the concept has occurred.

Key criteria for pacing, drawn from the literature by Jamieson-Lega, Berry & Brown (2013) show that pacing has five consistent attributes:

  1. Action – pacing involves intentional behaviour
  2. Time – pacing occurs over time and involves attending to time
  3. Balance – weighting activity and rest in accordance with intended outcomes
  4. Learning – pacing needs to be learned, it requires an effort
  5. Self-management – the process of using pacing involves independently integrating the practice once the skill has been developed.

The definition proposed by this group is therefore slightly different from Neilson and colleagues:

“Pacing is an active self-management strategy whereby individuals develop self-efficacy through learning to balance time spent on activity and rest for the purpose of achieving increased function” (p. 209).

When would someone need to develop this skill and what might happen if they use it successfully?

Janieson-Lega, Berry and Brown (2013) suggest that there are prerequisites for the need to develop pacing.  These involve activity disruption secondary to pain, imbalance between activity and rest, patient’s lack of pain self-management knowledge and having pain. When an individual successfully uses pacing, the expected outcomes are pain management, self-direction and improved self-efficacy, avoidance of pain exacerbation, balanced activity/rest, increased functional ability, and increased knowledge and skills in activity planning and prioritising (p. 210).

Therefore, if a person with chronic pain isn’t able to engage in what they want to do, finds it difficult to have sufficient rest or activity, lacks self-management knowledge and has pain, they could expect that pacing would enable them to manage their pain more effectively, become self-directed and more confident, minimise flare-ups, have a balance between activity and rest, be able to do more, and know more about what is important and how to achieve what is valued.

What does the literature suggest?

Despite the problems with defining pacing, and consequently having no real measure of pacing, there have been several studies examining the relationship between pacing and other important variables. The first study I saw of pacing was McCracken and Samuel’s 2007 paper looking at the relationship between avoidance, pacing and other activity patterns.  Surprisingly, these authors found that pacing was associated with both activity avoidance and disability. From this study, the authors suggested that avoidance activity may resemble healthy coping (and from this I deduced that pacing is considered “healthy”).

Murphy, Smith & Alexander (2008) conducted a small pilot study of activity pacing in women with lower limb osteoarthritis. This study used actigraphy to monitor movements, and correlated this data with self-reported pain and fatigue. This study found that “high pacers” had more severe, escalating symptoms, and activity pacing was related to lower physical activity. Karsdorp & Vlaeyen (2009) found that activity avoidance but not activity pacing was associated with disability, and challenged the notion that pacing as an intervention is essential in pain management.  van Huet, Innes, & Whiteford (2009) on the other hand, found that “graduates” from a pain  management programme continued to use pacing strategies years after completing a programme, but made no comments as to the effect on outcomes although they did comment that “the application of pacing tended to be individualised, with the use of self-selected time increments and novel strategies providing structure to limit over-activity” (p. 2036).

Andrews, Strong & Meredith (2012) completed a systematic review of activity pacing in relation to avoidance, endurance and functioning.  This study found that pacing was linked to better psychological functioning but more pain and disability, but couldn’t comment on the direction of this relationship.

What about people with chronic pain, what do they think?

People with chronic pain indicate that they use pacing in studies within the qualitative literature. The problem is that these describes rarely include definitions of pacing.  van Huet, Innes and Whiteford’s study from 2009 provides quotes from graduates of pain management programmes who describe pacing as “doing things in bursts of 20 minutes and half an hour, then changing what I’m doing, then go back”; “you don’t have to do the whole lawn at once”.

From my study of people who cope well with pain, participants were selective about their use of pacing. Many of them indicated that pacing was not used when they had an important goal to achieve, while using “chunking” or breaking activities into smaller units was used from time to time – what was interesting is that pain intensity wasn’t used as an indicator for when to stop. Patients I’ve worked with in the past have described using pain intensity or fatigue as the indicator – they always stopped before their pain or fatigue “got out of hand”.

Where does this leave us?

My take in pacing as it currently stands is that there is a great deal of confusion on the matter. My personal opinion, and from both the literature and my own experience with my fibromyalgia, is that pacing can be useful in several ways – but can also be unhelpful.

Here’s how I think it can be useful:

  • When beginning to work towards an increased activity level – by setting a baseline level of activity, then titrating this level up by time or “chunk” increments rather than using pain or fatigue as a guide
  • When individuals are finding it hard to maintain activity levels over a day/week/month, pacing using time or quota as the guide can help extend activity levels over a longer period
  • When people are not sure of their symptoms and find it difficult to know what triggers an exacerbation, usually during the “making sense of pain” phase of adjusting to chronic pain
  • When engaging in routine activities that don’t need to be carried out all at once, such as mowing the lawn, doing the laundry, vacuuming the house. Things that need to be done, but might be carried out over a longer period of time than a single session. I used this approach to write my PhD using Pomodoro Technique.  I also use it when doing housework.

When might it be unhelpful?

  • When individuals continue to use pain as a guide to stopping activity, and “stop before it flares up”
  • When individuals monitor their pain intensity and seek to avoid fluctuations in pain
  • When working to a quota doesn’t help them reach goals and isn’t used to reduce distress, disability and isn’t progressed. A good example of this is the “5 minute break” I saw instituted in a data entry workplace. It was a computerised system that stopped the keyboard for five minutes with no over-ride. The “5 minute break” was obligatory for everyone every 45 minutes, there was no rationale for using it, it interrupted flow, and people HATED it. I’ve seen similar things used when people are returning to work – “work for 15 minutes then stop for 5”, maintained for weeks without being reviewed and without establishing effect.

Next steps?

Having arrived at a reasonable definition, I think it’s time to see how people use pacing in daily life, within the context of the ebb and flow of normal activities. I’d like to see an ecological momentary assessment approach to see what triggers use of pacing, how well do people return to their activities, how long is a break, and whether there is an impact on both disability and distress.

 

Andrews, Nicole E., Strong, Jenny, & Meredith, Pamela J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Gill, Joanna R., & Brown, Cary A. (2009). A structured review of the evidence for pacing as a chronic pain intervention. European Journal of Pain, 13(2), 214-216. doi: 10.1016/j.ejpain.2008.03.011

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18(4), 207-213.

McCracken, Lance, & Samuel, Victoria. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain, 130(1), 119 – 125.

Murphy, S. L., Smith, D. M., & Alexander, N. B. (2008). Measuring activity pacing in women with lower-extremity osteoarthritis: a pilot study. American Journal of Occupational Therapy, 62(3), 329-334.

Nielson, Warren R. PhD, Jensen, Mark P. PhD, Karsdorp, Petra A. PhD, & Vlaeyen, Johannes W. S. PhD. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

van Huet, Helen, Innes, Ev, & Whiteford, Gail. (2009). Living and doing with chronic pain: Narratives of pain program participants. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(24), 2031-2040. doi: 10.3109/09638280902887784

Interrupted by Pain


If there’s one thing I loathe, it’s being interrupted when I’m in the middle of something. There I am, working away at something, in the flow, knowing where I’m going and what I’m doing then BANG! something gets in the way!

I wasn’t aware, but there is a science of interruptions – mainly studied within ergonomics or human factors research (the study of work and humans) – and this science has begun to unravel some of the issues associated with interruptions. Interruptions are not only annoying, they’re also a good way to provoke mistakes!

Pain is, as Geert Crombez and others have shown, a stimulus we find difficult to ignore. It interrupts what we have planned, and orients us towards finding ways to escape the stimulus. Of course, when pain doesn’t stop, as in chronic pain, people learn to deal with the interruptive effect of pain so they can get on and do things that are important – but at the same time, because part of our brains must deal with the pain in some way, our performance can be degraded.  Essentially, to continue doing something important when pain is also present requires us to deal with goal conflict. 

What happens when a person becomes aware of his or her pain while working on another goal?

Well, initially, the goal pursuit remains strong – our brains are very good at prioritising what we want to do, except when the new stimulus is salient (relevant), novel (new) and intense. Pain is (usually) relevant (it’s a threat!), is experienced as something new or different about our bodily status, and varies in intensity. So in the context of a task, people may remain focused on the task until the pain is intense enough, or meaningful enough, or new for it to capture the attention.

So, pain gets in the way, and we attend to the threat and the threat reduces.

After some time, we return to what we were doing – but the time that it takes to get back to what we were doing differs depending on a bunch of things.

Those things include

  • the threat value of the pain,
  • how readily it resolved,
  • how close to the end of the original activity we were,
  • how quickly we oriented towards the pain (the more quickly we do, the less easily we return to doing what we were originally doing, perhaps because we don’t have time to code the need to return to it into our memory before we move on to address the pain),
  • whether there are cues in the environment that help us remember to get back to the original activity

and a bunch of other things as well.

Some interesting facts have emerged about interruptions – if we have many interruptions, it’s easier to adapt to them and get back to the original task (which is possibly why mothers are known to be good at multi-tasking!); unpredictible interruptions are more difficult to recover from, they’re more disruptive; interruptions that last a long time make it more difficult to return to the original task.

In the case of chronic pain, pain is usually present to at least a certain degree all the time. It’s when it is intense, or the character changes, or it is particularly salient, or perhaps our overall coping is less, that pain interrupts more. So, for some people, it’s possible to delay being taken off task to attend to pain because these people might have learned that it’s “nothing unusual”, it isn’t a threat, it will subside of its own accord, or it’s just less important than the goal they’re working on.

For those of us who do deal with chronic pain, the aspect that may still trip us up is getting back to the activity we were working on before we needed to take a break because of our pain. If we need to take a long break, if we stop the original activity without having clearly planned to stop, if we don’t give ourselves cues to return to the activity, we might find it more difficult to remember (a) where we were in the activity, and (b) that we actually were working on something!

The relevance of interruptions becomes very important when, as therapists, we suggest to people that they consider using activity pacing.

While the definitions of pacing are not clear and still being debates, essentially it means interrupting what a person is doing to take a break, regain energy or maintain pain at a reasonable level. I’m sure many of you will remember the old-fashioned programmes on the computer that used to flash up a screen telling you to STOP! and do a break or stretch. You could “ignore” it a few times, but eventually it would lock your computer so you couldn’t use it until you’d taken the predetermined break. I LOATHED it! I’d be halfway through writing something and it would stop me and get in the way. So I deleted the programme.

That’s one of the problems of these kinds of approaches to activity management – they may stop you “overdoing” something, but they often stop you from completing a task, and completely disrupt your thinking!

My preferred way of helping people to use “pacing” was to suggest “activity chunking” where, at the completion of some chunk of an activity, the person could take a quick break to do a body scan or stretch or something. I found that people used this strategy more often, complained less often, and consequently relaxed a lot more!

After reading about pain and interruptions, I can now understand why this strategy was a little more effective – because at the end of a chunk of activity there are cues established in the memory to remind us that we’ve got a task to complete. These breaks were planned and expected, so they were easier to anticipate, and therefore accommodate.  Eventually, as people got good at them, they become habitual and no longer seem to get in the way of doing the original task.

Pacing, interruptions and pain. People with chronic pain are chronic multi-taskers. We know multi-tasking isn’t good for cognitive efficiency, accuracy or even energy (see the references below), so quite apart from the added burdens we as clinicians might give to people with chronic pain by suggesting “pacing”, people who have chronic pain are chronically stretched cognitively.

My suggestion for managing the demands of pacing and pain is to use planned breaks, preferably using chunks – or, as I’ve been doing recently, using Pomodoro technique to plan and schedule my activities and breaks. I also use mindfulness when my pain begins to get noticeable. By doing this I can remain “on task” rather than distracted.

Conard, M.A., & Marsh, R.F. (2014). Interest level improves learning but does not moderate the effects of interruptions: An experiment using simultaneous multitasking. Learning and Individual Differences, 30, 112-117.
Finley, J.R., Benjamin, A.S., & McCarley, J.S. (2014). Metacognition of multitasking: How well do we predict the costs of divided attention? Journal of Experimental Psychology: Applied, 20(2), 158-165.
Gatzounis, R., Schrooten, M. G. S., Crombez, G., & Vlaeyen, J. W. S. (2014). Interrupted by pain: An anatomy of pain-contingent activity interruptions. PAIN®, 155(7), 1192-1195. doi: http://dx.doi.org/10.1016/j.pain.2014.03.017

Katidioti, I., & Taatgen, N.A. (2014). Choice in multitasking: How delays in the primary task turn a rational into an irrational multitasker. Human Factors, 56(4), 728-736.
Munneke, J., Fait, E., & Mazza, V. (2013). Attentional processing of multiple targets and distractors. Psychophysiology, 50(11), 1104-1108.
Sanjram, P.K. (2013). Attention and intended action in multitasking: An understanding of cognitive workload. Displays, 34(4), 283-291.

 

Working inside the envelope – or pushing the boundaries


ResearchBlogging.org
There is something very satisfying about reading a well-designed and beautifully written research paper. Not only can it produce some helpful answers (and usually pose multiple questions!), but the process that is followed means it’s pretty easy to see how the researchers arrive at their conclusions. This paper by White, Goldsmith, Johnson, Potts, Wolwyn, DeCesare, et al., is just one of those papers.

Why am I writing about research into four treatments for chronic fatigue syndrome?  Well, the treatment options used in this trial are exactly the same treatments used in chronic pain management (cognitive behavioural therapy, graded exercise therapy, adaptive pacing therapy and specialist medical care). And it poses the question: does ‘working inside the envelope’ of energy help people achieve better mood status and better functional status than challenging the assumption that ‘this is as good as it gets’?

On with the method.  This study examines four different treatments carried out in parallel, it’s an unblinded/masked randomised trial designed to establish the effectiveness of these treatments as well as the adverse events associated with each treatment, and reviews the outcomes up to one year after treatment ended.

Participants were carefully selected to meet the criteria for a diagnosis of chronic fatigue syndrome, and it’s interesting to see that only 28% of the people initially recruited actually met these criteria, and of this group, only 71% or 641 people actually progressed through to treatment.  Thankfully the CONSORT trial profile included in the paper shows very clearly who was ‘in’ and who was ‘out’ – and why!

Clinicians were carefully trained, supervised regularly, and treatments were monitored for adherence to the treatment type, the manual used, and that sufficient number of sessions were carried out.

A number of outcome measures were used – primary outcome measures of fatigue and the SF-36 physical subscale, with secondary outcome measures covering a range of variables including the ‘I think you look better’ clinical global impression scale, the six minute walk test, and the number of chronic fatigue symptoms remaining, along with a couple of others.

So what exactly were they testing in this study?

Adaptive pacing therapy is based on the idea that people with chronic fatigue have a limited amount of energy available, and that this is fairly static with limited potential for improvement.  People are asked to monitor their fatigue, and plan their days according to their energy levels, avoid ‘overdoing’ things, prioritise and therefore achieve what is important, and set the scene for natural recovery, if that occurs.  The strategies include looking at daily activities to identify links between activity and fatigue, becoming aware of ‘early warning signs’ of fatigue, regularly using rest and relaxation and generally attempting to ensure that no single activity exceeded ‘70% of the energy envelope’.  Participants could participate in more activities provided they felt they could and as long as their symptoms didn’t get worse.

Cognitive behavioural therapy is based on the idea that chronic fatigue is reversible, and that fear of activity (cognitions) and avoidance of activity (behaviours) influence physiology and perpetuate the problem.  By changing the appraisals of symptoms and introducing approach behaviour rather than avoidance within ‘behavioural experiments’, participants can test the usefulness of their beliefs and gradually, in a planned way, increase their activity level.  This is delivered within the context of identifying important activities and problem solving through obstacles that could get in the way of engaging in these activities.

Graded exercise therapy is based on the idea that people with chronic fatigue are, at least in part, deconditioned and intolerant of activity.  By gently extending the level of activity, participants can reverse the physiological changes that perpetuate chronic fatigue, and gradually return to participate in everyday activities.  Participants develop a baseline level of activity, then in planned increments of time rather than symptoms, start to increase the amount of time they spent in exercise.  Target heart rates and time exercising were set collaboratively, and most participants started with walking.

Specialist medical care consisted of education about chronic fatigue, prescription of symptom-alleviating medications (mainly for sleep, pain and mood), and general ‘self help’ advice.

What happened?

Well, surprisingly, both the specialist medical care and the adaptive pacing therapy achieved similar results across the outcome domains.  And both CBT and graded exercise therapy achieved similar results over the domains, with CBT improving mood slightly more than GET, and GET improving physical activity slightly more than CBT.  What was incredibly surprising is that both of these therapies were more effective than pacing and specialist medical advice.  And even more surprising was that the rate of adverse events was pretty similar – with CBT having the least number of events than those in adaptive pacing or graded exercise therapy.  None of these adverse events was considered, according to predetermined criteria, to be a ‘serious’ event, and adverse events generally were quite common.

How does this study finding apply to chronic pain management?

I think the underlying hypotheses of the treatments used in this study are pretty much the same as those used in chronic pain management.  The question is – do we help people ‘live within their limits’, or do we help people extend beyond those current restrictions and progress towards doing things they think they can’t?  It’s a question that some clinicians don’t even consider because the focus in chronic pain management has so often been on curing or fixing the pain.  And then there are clinicians like myself who want to help people live well despite still experiencing pain.

But in a large number of support groups, the whole idea of learning to do more seems invalidating.  To want to change from being seriously disabled to living pretty much normal lives means giving up some of the ‘being disabled’ identity.  It can mean no longer being given special consideration, or having the limitations of choosing what to do and when to do it acknowledged by others.

I’m not sure that I give enough time and attention to helping people mourn these losses as we try to push the boundaries.  At the same time as making space for mourning though, I want to give hope that life can be good, and better, than what is current.  Time to push the boundaries – but gently does it.

White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O’Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M, & PACE trial management group (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet, 377 (9768), 823-36 PMID: 21334061

Establishing routines and baselines: Recording daily schedules


ResearchBlogging.org
I don’t know about you, but I’m not the world’s best at noting down every activity I do during a day.  I get engrossed in the thing I’m doing and I often get interrupted, so it’s not very easy to record my activity moment-by-moment.  Yet, for many of us, this is something we ask for from the people we’re working with.

Luckily, there is some research on daily diary methods.  Unluckily for most of us, the best ones (ie most accurate and least intrusive) are electronic!  Useful if you’re funded for some research, less helpful if you’re trying to do this in your everyday clinical setting!  Basically, the research findings show that an electronic, automated and usually random alarm that reminds the participant to record their activity (and usually pain) then-and-there provides more complete data than a paper diary.

I’m definitely no computer programming expert (actually I don’t know anything about programming – I just use the darned things), so I don’t have access to either the technology or the programming to be able to use an electronic diary.  One day perhaps.  So I rely on paper recording.

Various diary formats are available, and it depends on what you’re wanting from the diary recordings as to the best format to use.  The main things to remember are:

  • Not everyone follows the instructions! If the effort of completing any daily recording is too high, you’ll see the person quickly scribbling in the diary in the waiting room – not quite what you hope for!
  • Keep the demands reasonable.  If you would find filling a diary of everything that you do difficult, it’s likely the person you’re working with will too.  In practical terms this means making the purpose of the diary very clear (so importance is high), and the recording process as simple as possible (so confidence that it can be done is high).
  • Cuing the recording to regular activities helps.  So it’s a good idea to anchor filling out the diary to mealtimes, for example.  Of course if the person doesn’t have regular mealtimes, this isn’t going to be easy – but just by tying the recording to specific times of the day may be sufficient.
  • Tickboxes are easier than writing words.  If you can, make the recording process as simple as possible – it’s easier to tick a box for a category of activity, for example, than to write down “Grocery shopping”.
  • Recording something draws attention to it. And is this what you’re wanting? If you ask a person to record pain intensity, and you’re really aiming to increase activity, you’re focusing the person’s attention onto pain rather than onto whether they’ve completed the activity.  I personally rarely record pain intensity, and I don’t talk much about pain intensity after the first session.  I don’t aim to alter pain intensity, so I don’t focus on it.  If I want to focus on distress or thoughts or ‘up time’ – these are what I’ll ask the person to record.

With someone who finds it difficult to record anything, the initial focus could be on simply recording how often a target behaviour occurs.  For example, I’m working with a woman who has very low confidence for managing painful flare-ups, so she does very little on high pain days.  She’s also quite low in mood and becomes highly distressed.

I’ve worked with her to identify two activities that she can do everyday – putting on makeup, having coffee with her children.  We’re only recording (with a tick!) the number of times in a week that she completes these two activities.  By focusing on an activity she wants to do, and only recording when she is successful, her attention is on what she is doing (rather than the entire list of things she’s not doing), and she gradually seeing only the successes, rather than recording her failures.  We add the total number of days in a week that she’s been successful, and increasing that running total is our goal.  I’ve limited the number of activities she’s recording – too many, and she’ll be overwhelmed and feel demoralised.  Once she’s managed these two activities consistently every day, we’ll add another activity to the list.

Another approach is to use the ‘Plan to, Did do’ diary.  In this approach, popularised by Sullivan in the Progressive Goal Attainment Programme (PGAP), the participants make a plan for the day either the night before, or in the morning.  At the end of the day, they note down their actual activity pattern beside their planned ones.  At the bottom of the sheet, some of the strategies the person used to do their activities can be listed – both the planned ones, and the ones they actually used.

And my final adaptation is to use a colour coding arrangement on a spreadsheet with one client.  To help her identify the balance of activities she carried out during each and week, she completed her daily activities in a spreadsheet, and used colours for ‘self care’, ‘family’, ‘paid work’, ‘exercise’, ‘relaxation’, ‘household management’.  By doing this she was quickly able to review her week to see how closely she’d followed her planned allocation of activities over the week.  This allowed her some flexibility within each day, with the focus on her weekly balance rather than her daily schedule.

I’ve listed some interesting papers on the use of electronic recording

Allen, K. D., Coffman, C. J., Golightly, Y. M., Stechuchak, K. M., Voils, C. I., & Keefe, F. J. Comparison of pain measures among patients with osteoarthritis. The Journal of Pain, 11(6), 522-527.

Kristiansen K, Lyngholm-Kjaerby P, & Moe C (2010). Introduction and Validation of DoloTest(®): a new health-related quality of life tool used in pain patients. Pain practice : the official journal of World Institute of Pain, 10 (5), 396-403 PMID: 20384966

Palermo, T. (2004). A randomized trial of electronic versus paper pain diaries in children: impact on compliance, accuracy, and acceptability Pain, 107 (3), 213-219 DOI: 10.1016/j.pain.2003.10.005

Schiavenato M, & Craig KD (2010). Pain assessment as a social transaction: beyond the “gold standard”. The Clinical journal of pain, 26 (8), 667-76 PMID: 20664341

Establishing routines and baselines: Baseline recording


One of the problems novice clinicians often complain about is that journals and research papers rarely examine or provide practical approaches to daily problems that are encountered when working with people who have chronic pain.

It can take a lot of work to locate suitable approaches to things like:

  • ways to help a person who is not accepting that a cure for chronic pain is unavailable
  • ‘motivating’ a person to engage in activities that are anticipated to increase pain
  • how to develop a baseline and establish an appropriate rate of progression
  • how to establish a daily routine

It’s tempting to think that in the absence of evidence-based approaches, the clinical skills are artistic rather than scientific, but I’m not so sure about that.  Maybe it’s more a case of lack of systematic documentation about methods used, or lack of systematic examination of the ways in which these often non-sexy and very practical strategies might be improved (subtle hint to clinical researchers here!).

Anyway, there are a few approaches that I’ve collected for developing a daily routine and baseline.  To date I don’t have publications to cite in their defense, so you’ll need to join me in exploring how and whether these work to help people with chronic pain become aware of their activity patterns.  First up: Baselines

There is good evidence that simply by recording what happens on a daily basis, positive changes can begin to occur.   This is a basic behavioural approach that has been used in eating disorders, smoking cessation, exercise, diabetes blood sugar monitoring and treatments for OCD.  It’s the principle that by having feedback available about often habitual activities, we’re more aware of them, and can begin to recognise antecedents and consequences of the behaviours in question.

The process of recording what happens, when it happens, and what comes after is often called ‘establishing a baseline’.  Clinicians unfamiliar with psychological use of baselines use the term without realising that, for behaviour change, the natural variations in behaviour need to settle into some sort of pattern in order for it to be called a ‘baseline’.

Variations in activity levels, for example, may not occur over the course of a single day or even over the course of a week.   If we don’t spend the time exploring variations over time until they’ve settled into a recognisable pattern, it can seem as if there are no patterns and fluctuations occur in a totally random way.

Once a baseline is recorded, we can start to analyse the antecedent triggers or events might be (ie the things that come before a behaviour), and the consequences of each type of behaviour.  This can help us identify the type of situation the person has trouble managing effectively (or in a way that is aligned with the person’s values in the long term).

For example, we might notice that it’s often after a period of feeling relatively comfortable that the person suddenly starts increasing his/her exercise demands.  After a few days of increased exercise, he/she might suddenly stop.  It’s important to explore the reasons the person felt it was important to increase exercising – automatic thoughts about being ‘lazy’ for feeling OK but not making the most of it? or automatic thoughts that the pain has ‘gone’ and ‘I’m cured’ so it’s time to start doing things normally again? or did the person get ‘bored’ of doing the same old thing and seek something more stimulating and blow their energy budget?

There are loads of ways to record baseline activity – diaries similar to an appointment diary; recording sheets that have several things to track such as sitting time, distance walked, thoughts about situations – and for people with high-tech backgrounds, electronic diaries that ask the person to note their activity as they go just by clicking on a button on a phone or PDA or iPad.

There is some research on whether there are differences in the quality of information collected via pen and paper through the day, or whether an ‘end of day’ record is sufficient.  I think it depends on the purpose of your assessment, and it also depends on the ‘pen-and-paper-ness’ of the person you’re working with!  In other words, it’s going to be difficult for a heavy labourer with limited access to pen and paper and low literacy to complete a detailed activity diary throughout the day, but if you’re asking a busy executive who is used to carrying a PDA or iPad around with them to do the same activity electronically, it’ll probably happen.

One simple electronic method of recording ‘up-time’ is a simple pedometer.  Taped up so it can’t be opened, it can be worn for three or four days, then opened, the total number of steps recorded, divided by the number of days, and there is a rough measure of general activity level.  This can help when developing and monitoring activity level over a longer period, such as when you’re helping someone begin a walking programme, or to maintain an even level of activity each day.  Just by recording the number of steps over a fortnight or so, with a target of maintaining the same number of steps each day, the person has a target to aim for and it can act as feedback on their overall activity level and help shape their activity behaviour.

More on ways to establish routines next time!  If you find this interesting and want to know more, or have questions, don’t forget you can post a comment below, and I’ll do my best to help.  I’m also collecting some diary and other recording formats that I’ll post in my next post.