Not a research post today, but a great experience that I hope will encourage anyone who is not already a fan of regular outcome measurement to get on with it!
I saw a person yesterday who has had pain for about 3 years. Superficially she’d been managing quite well – still working, having a social life, managing all her household activities and in general, looking good. BUT – and you knew there would be a ‘but’ – once I started to look a little deeper, it was absolutely amazing to see how much she had adapted her life to avoid specific movements.
I used the PHODA (photographs of daily activities) to assess the specific movements and activities she didn’t like to do. I’ve blogged about PHODA (Kugler et al, 1999) before – a set of photographs of everyday activities in a variety of settings that can be used to identify and score fearfulness and avoidance. The findings showed that although this woman was able to do things, the way she did them was to avoid ANY bending, twisting, reaching, jarring or lifting. She was the original Gadget Queen with things to help her do everything WITHOUT bending. An occupational therapists dream!
So she sat on the floor to change her shoes, put on socks, dress the lower part of her body. She hung her handbag on a chair so she didn’t have to bend down to pick it up. She avoided dropping anything on the floor because if it fell, she’d have to leave it there – and wait for someone to come to her house to pick it up.
She did her own shopping, but anything on the bottom shelves of the supermarket she didn’t buy. She loaded all the groceries into her car, but only onto the back seat. She told me she could lift the bags of groceries one at a time, and quite often she’d empty the bags out and carry items out one at a time. If something fell on the car floor – well it would stay there!
In so many ways, although she had continued to do everything, she was actually avoiding any spine movement.
I asked her why she had stopped moving her back, and she told me ‘because it hurts’, and I asked her what that meant ‘the little elastic bits will snap’, and I asked what that would mean ‘I might cease up and be stuck like that forever’. Hmmm.
Now it’s not just her thoughts about her pain, and the avoidance, but also about her family and the way they supported her, and to a certain extent, the medical treatment she’d had which had focused for three years on reducing her pain. This focus had done a couple of things –
- Firstly, she’d developed a fear of actually experiencing pain and so had become very aware of any signs her pain was returning;
- she’d never really been asked to review her personal model of her pain, and as a result she continued to believe in an acute model of pain (ie that there was something ‘damaged’ in her back);
- and finally, when she did experience pain, she didn’t have many active coping strategies and she tended to catastrophise.
On with the story. I followed a graded exposure model for this woman, and we developed a hierarchy of activities and situations beginning with simply twisting while sitting in her car (to look behind when backing), through to picking up her bag off the floor, and on to crouching to take her shoes off.
I work in a wonderful team environment, so the other members of the team worked on hydrotherapy and graded exercises for strength and general fitness, as well as cognitive therapy for her thought patterns and sleep, leaving me to focus on the exposure programme.
It’s been about 8 weeks since we started, and I went through the PHODA again to see what she continued to be worried about, and to see whether she was generalising her increased confidence to other situations.
From an initial position of being concerned and definitely NOT wanting to do 64 of the total 99 pictures on the PHODA, she now identifies only 30 problematic pictures. She’s aware of her progress and points out where she has made changes (like she now bends down to her lower cupboards, and reaches above her head to her highest cupboard. She lifts her washing basket from a chair and can put it on the floor. She notices her stride length is longer and she can go up and down stairs.
Identifying her underlying concerns about movements and actively reality-testing them through experimentation (not simply discussing them) has made a major impact on her progress. She commented that she’s gained confidence because she knows she can face challenging situations and be successful – and she trusts that when the hierarchy is reviewed, she won’t be asked to work beyond her capability.
I have to add that she’s also completed a range of other psychometric measures – the Pain Anxiety Symptoms Scale (McCracken et al. 1996) and the TSK (Kori, Miller & Todd, 1990) as well as regular review of her mood using the CES-D (Radloff, 1977) have really helped monitor her progress. What this has done for her is demonstrate that, even during hard times, she continues to make progress.
What formal outcome measurement does is provide an external, unbiased way for you and your patient or client to measure progress. It becomes a way of validating his or her experience so that irrespective of emotion (or pain) he or she can recognise that things are different. So, if you don’t do it formally now – what’s your reason?
Kori, S., Miller, R. P., & Todd, D. D. (1990). Kinesiophobia: A new view of chronic pain behaviour. Pain Management, 35 – 43.
Kugler K, Wijn J, Geilen M, de Jong J, Vlaeyen JWS. The photograph series of daily activities (PHODA). The Netherlands: Heerlen; 1999.
McCracken, L. M., Gross, R. T., Aikens, J., & Carnrike, C. L., Jr. (1996). The assessment of anxiety and fear in persons with chronic pain: a comparison of instruments. Behaviour Research & Therapy, 34(11-12), 927-933.
Radloff LS, The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 1977, pp.385-401.