What do we do with those questionnaires?


Courtesy of many influences in pain management practice, you’d have to have been hiding under a rock or maybe be some sort of dinosaur not to have noticed the increasing emphasis on using questionnaires to measure factors such as pain catastrophising, depression or avoidance. The problem is I’m not sure we’ve all been certain about what to do with the results. It’s not uncommon for me to hear people saying “Oh but once I see psychosocial factors there, I just refer on”, or “they’re useful when the person’s not responding to my treatment, but otherwise…”, “we use them for outcome measures, but they’re not much use for my treatment planning”.

I think many clinicians think psychosocial questionnaires are all very well – but “intuition”  will do “…and what difference would it make to my treatment anyway?”

Today I thought I’d deconstruct the Pain Catastrophising Scale and show what it really means in clinical practice.

The Pain Catastrophising Scale is a well-known and very useful measure of an individual’s tendency to “think the worst” when they’re considering their pain. Catastrophising is defined as “an exaggerated negative mental set brought to bear during actual or anticipated painful experience” (Sullivan et al., 2001). The questionnaire was first developed by Sullivan, Bishop and Pivik in 1995, and the full copy including an extensive manual is available here. Keep returning to that page because updates are made frequently, providing more information about the utility of the measure.

The questionnaire itself is a 13-item measure using a 0 – 4 Likert-type scale from 0 = “not at all” to 4 = “all the time”. Respondents are instructed to “indicate the degree to which you have these thoughts and feelings when you are experiencing pain”.

There are three subscales measuring three major dimensions of catastrophising: rumination “I can’t stop thinking about how much it hurts”; magnification “I worry that something serious may happen”; and helplessness “It’s awful and I feel that it overwhelms me”.

To score the instrument, simply sum all the responses to all 13 items, but to get a better idea of how to help a person, the subscale calculations involve the following:

Rumination: sum items 8,9,10, and 11

Magnification: sum items 6,7, and 13

Helplessness: sum items 1,2,3,4,5, and 12

There’s not a lot of point in having numbers without knowing what they mean, so the manual provides means and standard deviations relating to a population individuals with injury leading to lost time from work in Nova Scotia, Canada.

thingClinicians are typically interested in whether the person sitting in front of them is likely to have trouble managing their pain, so the manual also provides “cut off”scores for what could be described as “clinically relevant” levels of catastrophising. A total score of 30 or more is thought to represent the 75th percentile of scores obtained by individuals with chronic pain.

The “so what” question

Cutting to the chase, the question is “so what”? What difference will getting this information from someone make to my clinical reasoning?

Leaving aside the enormous body of literature showing a relationship between high levels of catastrophising and generally poor responses to traditional treatments that address pain alone (including surgery for major joint replacement, recovery from multiple orthopaedic trauma, low back pain, shoulder pain etc), I think it’s helpful to dig down into what the three subscales tell us about the person we’re working with. It’s once we understand these tendencies that we can begin to work out how our approach with someone who has high levels of rumination might differ from what we’ll do when working with someone who has high levels of helplessness.

As an aside and being upfront, I think it’s important to remember that a questionnaire score will only tell you what a person wants you to know. Questionnaires are NOT X-rays of the mind! They’re just convenient ways to ask the same questions more than once, to collect the answers and compare what this person says with the responses from a whole lot of other people, and they allow us to organise information in a way that we might not think to do otherwise.  I also think it’s really important NOT to label a person as “a catastrophiser” as if this is a choice the person has made. People will have all sorts of reasons for tending to think the way they do, and judging someone is unprofessional and unethical.

Rumination

Rumination is that thing we do when a thought just won’t get out of our mind. You know the one – the ear worm, the endless round and round, especially at night, when we can’t get our mind off the things we’re worrying about. If a person has trouble with being able to drag his or her attention away, there are some useful things we can suggest. One theory about rumination is that it’s there as a sort of problem solving strategy, but one that has gone haywire.

Mindfulness can help so that people can notice their thoughts but not get hooked up into them. I like to use this both as a thought strategy, but also as a way of scanning the body and just noticing not only where the pain is experienced, but also where it is not.

“Fifteen minutes of worry” can also help – setting aside one specific time of the day (I like 7.00pm – 7.15pm) where you have to write down everything you’re worried about for a whole fifteen minutes without stopping. By also telling yourself throughout the day “I’m not worrying about this until tonight” and afterwards saying “I’ve already worried about this so I don’t need to right now”, worrying and ruminating can be contained. By being present with the thoughts during that 15 minutes, the threat value of the thought content is also reduced.

Magnification

This is the tendency to think of the worst possible thing rather than the most likely outcome, and it’s common! Magnification can really increase the distress and “freeze” response to a situation. If a person is thinking of all the worst possible outcomes it’s really hard for them to focus on what is actually happening in the here and now. There’s some adaptive features to magnification – if I’ve prepared for the worst, and it doesn’t happen, then I’m in a good situation to go on, but in some people this process becomes so overwhelming that their ability to plan is stopped in its tracks.

Once again, mindfulness can be really useful here, particularly paying attention to what is actually happening in the here and now, rather than what might happen or what has happened. Mindful attention to breathing, body and thoughts can help reduce the “freeze” response, and allow some space for problem solving.

Of course, accurate information presented in nonthreatening terms and in ways the person can process is important to de-threaten the experience of pain. This is at the heart of “explain pain” approaches – and it’s useful. What’s important, however, is to directly address the main concern of the person – and it may not be the pain itself, but the beliefs about what pain will mean in terms of being a good parent, holding down a job, maintaining intimacy, being responsible and reliable. It’s crucial to find out what the person is really concerned about – and then ensure your “reassurance” is really reassuring.

Helplessness

Helplessness is that feeling of “there’s nothing I can do to avoid this awful outcome so I won’t do anything”. It’s a precursor to feelings of depression and certainly part of feeling overwhelmed and out of control.

When a person is feeling helpless it’s important to help them regain a sense of self efficacy, or confidence that they CAN do something to help themselves, to exert some sort of control over their situation. It might be tempting to aim for focusing on pain intensity and helping them gain control over pain intensity, but because it’s often so variable and influenced by numerous factors, it might be more useful to help the person achieve some small goals that are definitely achievable. I often begin with breathing because it’s a foundation for mindfulness, relaxation and has a direct influence over physiological arousal.

You might also begin with some exercise or daily activities that are well within the capabilities of the person you’re seeing. I like walking as a first step (no pun intended) because it doesn’t require any equipment, it’s something we all do, and it can be readily titrated to add difficulty. It’s also something that can be generalised into so many different environments. In a physiotherapy situation I’d like to see PTs consider exercises as their medium for helping a person experience a sense of achievement, of control, rather than a means to an end (ie to “fix” some sort of deficit).

To conclude
Questionnaires don’t add value until they’re USED. I think it’s unethical to administer a questionnaire without knowing what it means, without using the results, and without integrating the results into clinical reasoning. The problem is that so many questionnaires are based on psychological models and these haven’t been integrated into physiotherapy or occupational therapy clinical reasoning models. Maybe it’s time to work out how do this?

Sullivan M J L, Bishop S, Pivik J. The Pain Catastrophizing Scale: Development and validation. Psychol Assess 1995, 7: 524-532.

Main, C. J., Foster, N., & Buchbinder, R. (2010). How important are back pain beliefs and expectations for satisfactory recovery from back pain? Best Practice & Research Clinical Rheumatology, 24(2), 205-217. doi:doi:10.1016/j.berh.2009.12.012

Sturgeon, J. A., Zautra, A. J., & Arewasikporn, A. (2014). A multilevel structural equation modeling analysis of vulnerabilities and resilience resources influencing affective adaptation to chronic pain. PAIN®, 155(2), 292-298. doi:http://dx.doi.org/10.1016/j.pain.2013.10.007

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11 comments

  1. Thanks for so elegantly “unpacking” the Pain Catastrophising Scale. Of course, the cut-offs are somewhat artificial in so far as the content of each of the three sub-scales provide snapshots of the not unusual responses of people experiencing the biological predicament we call “pain”.

    1. Of course they’re artificial cut-offs (which really need to be established for each population in which the measure is used), and of course every person who experiences pain will, to a greater or lesser extent, experience some of the things described by the questionnaire. That’s normal – but probably not helpful, at least as far as what we’ve learned from research. People differ in the degree to which they experience these things, and people who tend to score highly can be said to over-estimate the negative outcomes, under-estimate their ability to cope, and therefore become almost frozen in place, feeling very helpless. It’s normal to have moments when it all feels too much, or we worry about the worst possible outcome, or we can’t “unstick” the thinking. But it’s unhelpful to freak out, or to think the worst when it pushes a person into that horrible state where it’s hard to think straight, and where it’s difficult to access ways of coping. As I point out, there are times when it’s good to think the worst – so we can plan for it, and have resources to cope. There are other times when it’s not helpful – either when we over-estimate the possible adverse effects (like when a person believes their pain is something like cancer or they’ll end up in a wheelchair), or when we under-estimate how well we can deal with it (like when a person doesn’t realise they can breathe and down-regulate and ask for help and be heard and acknowledged). When we feel helpless and that there’s no way through – then it’s time to look at how clinicians can help the person evaluate their pain differently, and that’s the compassionate thing to do. Certainly not intended to judge people, or label them as something that seems to judge them as “lacking”.
      By using the PCS I would hope that clinicians can establish that a person who scores high on the measure needs additional acknowledgement, support and to be shown how to build confidence and appraise their situation in ways that helps them cope, rather than using the PCS as a way to say “it’s not my fault the treatment’s not working”.

    1. Soula this is a fabulous questionnaire for understanding a person’s experience, and the things they want from seeing a clinician. I do like it a lot. The thing with questionnaires is that they’re used for different things. What the PCS does is give an insight into the “freaking out” aspects of living with pain that we know are associated with poorer coping, greater disability and increased pain intensity. Although I loathe the words used (I hate anyone being labelled “a catastrophiser” as if people have a choice about how they feel about their situation), the construct appears to be relevant in many different situations where people experience pain. It’s like when two people have the same event happen, like an earthquake, but the effects are more keenly experienced by one compared with another – it doesn’t make the person who feels more distressed any less of a person, but it does mean you need to give more support to that person, and help them through it in a different way. The problems I think occur when people equate freaking out with “being a non-coper”, or in some way make a judgement about what it’s like for that person without understanding how the person got their or, worse, how they might want to be helped out of there.

  2. HI Bronnie,
    I concur with your thoughts about using scales such as PCS. As a physio I think these scales help me to tailor my treatments and allow a conversation with my patients that otherwise might take a long time to get to. At our clinic we refer to the PCS as Pain Coping Scale as catastrophizing has such a negative connotation. The conversations from PCS measure are invaluable for both me and my patients. At our clinic we use this with DASS and TSK to inform and guide our interventions. These combined with functional measures, MSK and movement patterns help our patients move forward to well being, not necessarily painfree..
    Your talk at unconference Canada was great and I am sharing it with my clinic community.

    1. Hi Mary
      Thanks so much for your kind words! I thoroughly enjoyed the Unconference and hope there will be many more. I intend to continue with a series on “how to use the questionnaires” because I think the clinical integration of the information they provide makes a huge difference to outcomes, but when they’re not integrated they end up being a waste of time. I’ve used both the DASS and TSK along with the PCS, in a battery of questionnaires given pre-appointment. I think it gives plenty of areas to explore with people and can enhance interactions in particular. Maybe it’s not so much WHAT we do with the results, as HOW we interact with people.

  3. Bronnie, on reading your final comment, I was reminded of this insightful observation made by medical sociologist Arthur Frank:

    “All the interventions that treat the body as an object, and that consequently understand pain as something inside the body, will never be enough for many patients … Sooner or later, what affects pain is the relationship between the patient and the clinician (Frank, 2003, p 619).”

    Frank AW. How stories remake what pain unmakes. In: Dostrovsky JO, Carr DB, Koltzenburg M, eds. Proceedings of the 10th World Congress on Pain (Progress in Pain Research and Management, V 24). Seattle: IASP Press, 2003: 619-630.

    1. To me it’s critical. Perhaps less so in an acute healthcare setting where life and death is a matter of technique and technology, but once the hiss and roar is over I think connecting with people is crucial – and yet it’s not well-regarded by clinicians, who seem to think it’s old hat and something they do already, and certainly not by managers and policy makers who want to count procedures and disregard the quality of each encounter. Caring takes time and energy and human warmth, it’s hard to count and hard to quantify except in the hearts and minds of those receiving.

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