Mood and anxiety – depression, anxiety and pain-specific anxiety were chosen because of their importance to outcomes, and the need to treat psychopathology
Catastrophising – because this is thought to be one of the most important aspects of cognition that needs to be addressed
Pain-related anxiety and avoidance – because this appears to be one of the strongest predictors of ongoing disability
Acceptance – this domain has been emerging as an increasingly important treatment process variable, and may be a target for intervention
Pain location and intensity – yes, we do ask, just in case you wondered!
Pain self efficacy – again, this seems to be an important process variable, and a target for treatment. It’s also associated with higher levels of disability.
Pain-related disability – this is, hopefully, one of our most important outcomes!
Please note: these are not the only areas assessed, these are the areas in which we use questionnaires.
Pain-related Anxiety and Avoidance (Fear-avoidance) – while I’m somewhat reserved about the predictive validity of this questionnaire in the people seen at Burwood Pain Management Centre, the only real contender for this domain at present is the Tampa Kinesiophobia Scale, or TSK. Here’s a pdf copy – but you know the rules! Don’t even think of using this unless you’ve read papers on its development and other properties, and know how to interpret it. This is a very popular scale, has good psychometric properties and I think the only reason I have reservations is because of the type of person referred to Burwood: because we’re a tertiary referral centre, we’ll often see people who have already been seen by many clinicians, so they’re fairly well ‘educated’ about pain, know pretty much what to say – but may not be making behavioural changes. What I have noticed is that people may not have high scores on the TSK, but when taken through functional activities, they’ll continue to avoid. What may be happening is that while people know that they’re not ‘doing damage’, they simply don’t want to move into positions that exacerbate their pain. This is still avoidance! In order to move beyond this and to reduce disability, it’s important that people are challenged to learn to experience fluctuations in pain and still be able to do things.
Acceptance – Routinely including a measure of Acceptance is quite new to our service, but given the increasing prominence of this construct in research, and particularly the relationship between acceptance and disability, we’ve decided to include the most widely accepted and researched measure, the Chronic Pain Acceptance Questionnaire (here’s a reference to one of the papers about it). I’ve blogged about this here. It’s really important to use the two sub-scales of this measure – one is Pain willingness, and the other is Activity Engagement. I think by using this measure, we’ll learn a lot about some of the most important aspects of avoidance (ie not being willing to experience pain) and this will help tease out some of the issues I’ve mentioned above with the TSK.
Pain location and intensity – no surprises here, we have a pain diagram (pain map) and a simple numeric rating scale using the timeframe of the past week, asking about most pain, least pain and current pain.
Pain Self Efficacy – this is about confidence to engage in things despite having pain. (Here’s a brief description of it) While there are some arguments that self efficacy is not a ‘general’ construct, and that it’s necessary to look at self efficacy for specific aspects of each area such as returning to work (SE that routines support RTW, SE for reliability to attend work, SE for avoiding injury and so on), this is a relatively brief measure that is widely used, and can be helpful as a broad brush indication of coping.
Disability – Here is where I feel really quite disappointed, because there does not seem to be a useful measure of disability and/or interference that is particularly fine-grained. The Pain Disability Index is our choice (here’s a pdf copy), but it’s common for people that I see to over-estimate their level of disability on one or two of the statements: notably the life-support activity: basic life-supporting behaviors (eating sleeping breathing etc.), and the work activity: activities partly or directly related to working including housework or volunteering. By this I mean that, on further inquiry, patients report carrying out the majority of these activities, but may have one thing (eg sleep) that is very affected – so they rate the whole scale at 10/10. For establishing precisely the areas that need further assessment, the PDI is not the best measure either, and I’d recommend something like the Sickness Impact Profile which, although is very long, is a very helpful measure for clinicians wanting to focus on improving function.
There are definitely some practical issues to be sorted when establishing the practice of routinely collecting questionnaire information. We’ve needed to consider things like:
- do we post the questionnaires out and get them back before the first appointment? (yes we do!)
- if the questionnaires are not returned, do we still proceed with the first appointment? (no, we don’t now, we’ll only make appointments once the questionnaires are returned, but we do offer support to help people complete them)
- once people are being seen for treatment, when do you repeat the questionnaires? (we will do one at pre-treatment if it’s more than 6 weeks since first assessment, we then complete them at end of treatment, 6 weeks later, 6 months later, and we repeat at 12 months, although we’ll review this depending on the number that are returned)
- do you repeat them all? (we’ve decided to do so)
- what if English is not the first language? (we ask for an interpreter to assist, but recognise that the normative data may not apply)
We’ve also needed to consider who scores them, who interprets them, and really practical things like storage, the database, and how to report on them.
Clerical staff enter the questionnaire responses onto an Excel spreadsheet, although this isn’t the best option because of the capacity of Excel and some difficulties with repeated measures.
All of the team members are expected to interpret them and are mentored to learn how to use them and report on them appropriately. None of these questionnaires are ‘Psychologist only’, and, people, we all do use standardised assessments, so if we don’t know what a mean, standard deviation or percentile is then it’s time for a refresher. Seriously.
For reporting, we will only provide an interpretation, we will not, despite some quite strong requests from certain funding agencies, provide actual scores. This makes sense – most of the time reports are sent to people who are not familiar with the assessment tools, and to only provide a number is meaningless.
Finally, storage – we store our completed questionnaires separately from patient notes, and they’re archived after 2 years or so, simply because of their bulk. There could be an argument for shredding them after 10 years, because the database holds the data drawn from them, but some of the information on the questionnaire booklets can be interesting – what people write in the margins, goals, and some of the comments.
I hope you’ve enjoyed this wander through our recent journey to generate a national dataset for pain questionnaires. While I think we have a long way to go for this to come ‘live’, I’m hopeful that within 2 years or so we’ll have something that will start to generate some really useful information on people receiving treatment for chronic pain in New Zealand.
Vowles, K. E., McCracken, L. M., McLeod, C., & Eccleston, C. (2008). The Chronic Pain Acceptance Questionnaire: Confirmatory factor analysis and identification of patient subgroups. Pain, 140, 284-291.