The fear avoidance (or pain-related fear and avoidance) model has given the clinical pain management community much to think about. Based on the “phobia” paradigm, the model has helped clinicians think about ways to engage people with pain in activities that they’ve previously avoided by identifying exactly what it is the person is concerned about, then using a graded exposure approach so individuals learn that they can do these things while dealing with the associated anxiety they’ve developed.
I’ve had some problems with the usual measure of kinesiophobia: the Tampa Scale of Kinesiophobia (TSK). I have usually seen people many years after the onset of pain, and by then they’ve mainly heard the explanations for their back pain (or other pain), and can recite the “hurt does not equal harm” mantra off by heart. On the TSK they don’t score all that highly. Yet they’re very disabled, avoid doing anything that might exacerbate their pain and remain extremely distressed. They know what to say on an assessment, but in the real world they’re no better off.
The TSK has been used for many years now as a good measure of kinesiophobia. Usually scores of above 45 (from a possible 68) suggest that the person has beliefs that their pain represents ongoing damage (Somatic focus) and that they should avoid doing anything that provokes pain (Activity avoidance). High scores have been associated with a wide range of negative outcomes including pain intensity, disability, distress – and in a wide range of individuals including people with chronic low back pain, acute low back pain, osteoarthritic knees and hips, shoulder pain and so on. Originally the measure was believed to tap into the idea that pain represents damage or harm, and also to measure the belief that activities should be avoided.
In people who have been well ‘educated’ in pain neurophysiology, intellectually they know that their pain isn’t about what goes on in the tissues, so they may score fairly low on the Somatic scale of the TSK. Yet they avoid – and when asked about this, they say things like “I know if I do things it’s going to increase my pain and I’ll have a really bad night’s sleep” or “I’ll have a rotten day” or “I’ll be grumpy with my kids”. It’s not the potential damage that’s the problem – instead the problem is really about the way they see that pain will get in the way of what they want to do.
While I know this from taking time with individual patients, as far as I know there haven’t been many studies examining the meaning of pain in those people who DO score highly on the TSK, so I was very glad to read Bunzli, Smith, Watkins and colleagues (2014) paper still in preprint on a mixed methods study looking at exactly this.
What did they do?
Participants with chronic low back pain were recruited from a larger study. Thirty six people were interviewed one month after they had completed the TSK, and asked “Tell me your pain story”, and then more detailed examination of exactly what individuals believed about their pain was conducted. The interviews were conducted by Samantha Bunzli, a PhD candidate and physiotherapist, as part of her PhD studies.
What did they find?
Firstly, many people in this study believed that pain during activity will damage them. Participants used words and explanations they had often heard from other health professionals to substantiate their belief that their backs are vulnerable, their bodies prone to damage, that they were inevitably going to deteriorate. Interestingly (but not unexpectedly) people with health training who were purposively sampled to be part of this study, also held strong beliefs that their backs were structurally damaged and without a diagnosis that fit with their beliefs about back pain, they were worried that pain was equal to harm.
Secondly, people believed that doing things that hurt would increase their suffering and result in greater interference or functional loss. Things like “I know if I do the wrong movement, the pain will get worse… Cos I know how bad the pain is and I don’t want to aggravate that area because I know that will cause the pain.” Some felt helpless in the face of pain, and because of this avoided it. Others pointed out that if they had an exacerbation it would mean ongoing disruption to life for a long time or over many different aspects of life such as sleep, work, family life.
Participants with high harm beliefs were selected into one group, and their TSK responses analysed. This group scored more highly on the Somatic focus scale than the participants who described pain avoidance beliefs (functional loss, suffering). Interestingly, people with beliefs that pain represented interference/functional loss didn’t score more highly on the Activity avoidance subscale.
What does this mean?
Most interventions using high TSK scores as their primary guide to inclusion involve graded exposure to reduce fear, and lots of behavioural testing and personalised information to help reconceptualise their pain as no longer representing damage. This won’t work for people who are fully aware their pain doesn’t mean damage, but instead are concerned about the broader effect of pain on their lives. To me this suggests that the greater problem for these people is helping to increase their self-efficacy for dealing with pain fluctuations. Personally I like the Acceptance and Commitment Therapy (ACT) approach for helping this group of people.
To be able to nonjudgementally notice pain, then remain on track to do what is highly valued to me seems a good way for this group of people to deal with their avoidance of pain intensity fluctuations. As Crombez. Eccleston, Van Damme, Vlaeyen and Karoly (2012) say pain is “more than a sign of bodily harm; it is an obstacle to be coped with in the daily pursuit of valued activities and goals that matter” (p.477). In my study, people who cope well with pain negotiate this delicate balance between exacerbating pain vs remaining engaged in important occupations by using “flexible persistence”. This is a process of planning and managing what is important at that time and in that context by using the entire repertoire of coping strategies people possess.
I can’t quite support Bunzli and colleague’s suggestion that “it is important that interventions not only target beliefs about pain, but also focus on the development of pain control strategies that are linked to individuals functional goals.” Well – actually I can to a point. Interventions must target beliefs and link interventions and strategies to functional (occupational, please!) goals – but to try to control pain is like holding onto water in your cupped hands. Yes, you can do it, but it’s frustrating, you don’t get much for the effort you put in, and it means you can’t do much else at the time. Control isn’t the answer to me: learning to accept and be willing to make room for pain might be a more useful approach.
A great study by Samantha Bunzli and co – and as a nearly-PhD myself, I love that she’s asked an interesting question, discovered some important new stuff, and got it out there where we can learn about it.
Bunzli, S., Smith, A., Watkins, R., Schütze, R., & O’Sullivan, P. (2014). “What Do People who Score Highly on the Tampa Scale of Kinesiophobia Really Believe? A Mixed Methods Investigation in People with Chronic Non Specific Low Back Pain The Clinical Journal of Pain DOI: 10.1097/AJP.0000000000000143
Crombez, Geert, Eccleston, Christopher, Van Damme, Stefaan, Vlaeyen, Johan W., & Karoly, Paul. (2012). Fear-avoidance model of chronic pain: The next generation. The Clinical Journal of Pain, 28(6), 475-483.