Catastrophising – the views of people with pain

Last week I posted the first in a series on pain catastrophizing. This week, instead of looking at the measurement instruments, I thought it worthwhile seeing what people with pain feel when looking at this construct. After all, when we’re talking about us (people with pain) shouldn’t our perspectives be taken into account? Nothing about us without us.

Webster and a large team of collaborators (Webster et al., 2022) conducted possibly the largest study examining the responses of people living with pain to the terms associated with catastrophising. Now the number of collaborators on this project tells you one thing, but what counts more is the quality of that study, so here goes with my attempt to understand it.

Firstly, it was an international survey study conducted online with invitations distributed very widely. The study was undertaken with full collaboration and inclusion of people living with pain (who preferred the term ‘patients’ throughout). Participants were over 18 years with chronic pain, or caregivers of those with chronic pain provided they were answering as proxies for those individuals. They were initially asked four questions:

(1) Have you heard of the term ‘pain catastrophising’?,

(2) Where did you first hear the term ‘pain catastrophising’?,

(3) Has a healthcare provider ever described you as being a ‘pain catastrophiser’ or said that you were ‘catastrophising’ your pain, or used the term to discuss your pain care?,

(4) If you answered yes to the previous question, thinking back to when this term may have been applied to you, please circle the number that best describes your level of agreement/disagreement with the following statements.

They were then asked to indicate their experiences and opinions of the term. After these first items participants were given a definition and explanation of the term pain catastrophising, drawn from the literature, and then asked three open-ended items: (1) what comes to mind when you hear the term pain catastrophising? (2) what would be a better term for pain catastrophising?, (3) Is there anything else you would like to tell us about the topic? And finally given 8 alternative terms that they could rate for suitability to replace the current term.

Who responded? Firstly, 2911 people took the time to answer the survey. That’s a good number! As usual and probably due to accessibility and reach of the survey, 77.3% of respondents were from the USA, and overall the majority of respondents were from well-developed countries such as Canada, Australia, New Zealand etc. Though there were about 2.4% who came from a range of other countries – and these were a mix of European, African, Middle Eastern and others. Most of the respondents were female (82.1%) aged on average 41-ish years, and 95% reported ongoing pain, with pain durations of more than 10 years.

Now to the goodish news. 44.5% had heard of the term pain catastrophising, but only 12% indicated they’d been described as ‘catastrophisers’ – and then the not so goodish news: but those who had been described this way felt they were being blamed, judged, and dismissed.

The authors then took the free text responses to the questions about what pain catastrophising meant and the consequences of that label on their care. Remember, they were asked about their reaction to the definition given “what first comes to your mind” and 1839 participants did respond! 68% of people didn’t spontaneously report negative experiences, but 32% did, using terms like ‘exaggeration’, ‘dismissive’, ‘overreaction’, ‘dramatisation’, ‘blame’, ‘hysterical’, ‘faking’, and ‘minimising.’ Responses were divided as to whether the term was useful with 80 individuals suggesting it was OK, and another group indicating that they acknowledged that ‘catastrophising’ wasn’t helpful to them with negative attitudes coming from clinicians indicating they thought it was, in the words of one respondent ‘…a bit demeaning and blaming.’

For those who had identified they’d been described as ‘catastrophising’ the response to the term depended on the care they subsequently received. Some people found the label meant they felt they were being called liars, their concerns were minimised, the felt blamed, and dismissed, and often feeling judged, ignored and belittled. And some even suggested the use of the term meant they felt clinicians thought their pain was not real, and 7 participants found this was used as a ‘weapon’ against them. Some respondents felt that by describing them as catastrophisers ‘the term minimised their pain or otherwise created a sense they could bring it under control if they tried harder.’ Others pointed to stigmatising because it ‘minimises the experience of the patient and immediately makes it a mental health problem and not a real medical problem.’

The authors also identified there were comments relating to negative gender stereotypes in 169 instances, with respondents stating they perceived women in particular were likely to have their pain minimised, while another said that the term ‘redirects the medical gaze away from other causes such as trauma’ saying ‘It fosters clinical distance by dehumanising the patient as a ‘catastrophiser’, reducing their experience to a syndrome and blaming it on them.’

When respondents were asked to rank alternative terms, there were mixed responses – from ‘If you are only looking for a more palatable term for the same condescending mind set, what is the point?’ to ‘How about not labeling it as a medical problem? It may be a normal reaction to an abnormal situation rather than a pathology.’ One that stood out to me was this: ‘Patients who have much experience with chronic pain and what it’s like when it is untreated or not treated adequately ‘anticipate’ what may be coming, and rightly so.’

In the discussion, the authors argue that while 2/3 of participants in this study did not spontaneously hold negative views about the term ‘pain catastrophising’ there were numerous distressing reports from those who had been given this label. They point to other researchers (Amtmann and colleagues, 2018, 2020) documenting patient concerns about stigma and blame from clinicians who themselves have few tools to help – and also indicated that participants described lack of caring and concern by clinicians who had given them this label.

The authors also point to changes in how the construct is perceived. It was originally thought to be a ‘trait’, ie a relatively long-standing aspect of how a person dealt with pain uncertainty. Now it’s becoming more apparent that pain catastrophising is mutable, changeable even outside of clinician interventions. They go on to say that even if the term is somewhat pejorative, the construct itself isn’t likely to go. It’s been so consistently associated with negative outcomes – and I for one, am not suggesting this research is irrevocably flawed. It’s the TERM that is troublesome, and the way in which clinicians use it to negatively label people.

Where do I stand with this now? Firstly, while the study was a large one, and conducted internationally, and with people living with pain as part of the research team, it has flaws. Only people with access to the internet (and knowledge of the study) responded, and there’s limited information about literacy and social factors. They’re also from WEIRD countries (Western, educated, industrialised, rich and democratic). We know little about their treatment experiences, or current pain problems – but many had pain for more than 10 years, so we can guess their pains are ‘treatment resistant.’ We also know that clinicians are less comfortable working with people who ‘don’t respond’ to treatment (just think of ‘failed back surgery’). These characteristics aren’t a problem – they simply point to the inherent bias in this kind of study. Bear that in mind when reading the conclusions.

I take up some of the points made in the 2024 papers by Connoy & Webster; Crombez, Scott & De Paepe; and yes, Sullivan & Tripp. Firstly, the language we use to describe a phenomenon is ‘sticky’ courtesy of relational frame theory. For a really good paper discussing how RFT applies in pain, you can’t go past Beekman et al., (2019). Language has power because it not only describes, it also shapes what is described, and we make associations between concepts – like ‘catastrophising’ and ‘hysterical’ and ‘women’ and ‘stigma’. Connoy and Webster argue that appealing to ‘disciplinary authority’, as Sullivan & Tripp do, is unhelpful because the term is used and abused in public education, media and press statements, social media visibility of scientific work where people communicate in open forums. Connoy and Webster also point out the limited acknowledgement by Sullivan and Tripp to the higher scoring on ‘pain catastrophising’ by women and Black people, saying they fail to acknowledge the historical and contemporary racialised and gendered contexts of clinical encounters. The key point Connoy and Webster make is that ‘Pain catastrophizing is a clinically constructed term that when uttered by clinicians labels some people’s responses to pain as maladaptive, irrational, and disordered.’

Crombez and colleagues (2024) on the other hand, point to the problematic way the concept is measured, based on analyses of the items used to identify who is, and who isn’t, ‘catastrophising.’ Similarly to Connoy and Webster, they agree that the decades of research into this idea should still stand – it’s the term that is problematic. If the measurement instrument is thought to measure something, but it measures something else – then let’s acknowledge that ‘something else’ and give it a meaningful name. They also argue that it’s not possible to identify whether someone is actually ‘view[ing] or present[ing] pain or pain-related problems as considerably worse than they actually are’ because we don’t have a gold standard measure of ‘normal’ in relation to the subjective experience of pain, and neither do we have ‘experts’ who can make these judgements in relation to an individual and their pain. They prefer to consider the experience of people with pain as ‘normal individuals in an abnormal situation.’

Finally, Sullivan and Tripp respond to these points in detail, saying that people using the term ‘pain catastrophising’ need to have better education about the construct, be more informed about who to use it with, and not to use it to stigmatise people with pain. I’ll dive into their response next week, suffice to say that once the genie is out of the bottle it’s pretty hard to put it back in. Unfortunately, terms describing psychosocial aspects of pain so often get misused that I think ‘education’ with respect to pain catastrophising is unlikely to reverse the very real stigma experienced by those who get described in this way.

Amtmann D, Bamer AM, Liljenquist KS, Cowan P, Salem R, Turk DC, Jensen MP (2020). The concerns about pain (CAP) scale: A patient-reported outcome measure of pain catastrophizing. Journal of Pain 21:1198-1211.

Amtmann D, Liljenquist K, Bamer A, Bocell F, Jensen M, Wilson R, Turk D (2018). Measuring pain catastrophizing and pain-related self-efficacy: Expert panels, focus groups, and cognitive interviews. Patient 11:107-117.

Beeckman, M., Hughes, S., Kissi, A., Simons, L. E., & Goubert, L. (2019). How an Understanding of Our Ability to Adhere to Verbal Rules Can Increase Insight Into (Mal)adaptive Functioning in Chronic Pain. Journal of Pain, 20(10), 1141-1154. https://doi.org/10.1016/j.jpain.2019.02.013

Connoy, L., & Webster, F. (2024). Why Language Matters in Chronic Pain: The Example of Pain Catastrophizing. Journal of Pain, 25(3), 588-590. https://doi.org/10.1016/j.jpain.2023.12.012

Crombez, G., Scott, W., & De Paepe, A. L. (2024). Knowing What We Are Talking About: The Case of Pain Catastrophizing. Journal of Pain, 25(3), 591-594. https://doi.org/10.1016/j.jpain.2023.12.014

Sullivan, M. J. L., & Tripp, D. A. (2024). Pain Catastrophizing: Controversies, Misconceptions and Future Directions. Journal of Pain, 25(3), 575-587. https://doi.org/10.1016/j.jpain.2023.07.004

Webster, F., Connoy, L., Longo, R., Ahuja, D., Amtmann, D., Anderson, A., Ashton-James, C. E., Boyd, H., Chambers, C. T., Cook, K. F., Cowan, P., Crombez, G., Feinstein, A. B., Fuqua, A., Gilam, G., Jordan, I., Mackey, S. C., Martins, E., Martire, L. M., . . . Darnall, B. D. (2023). Patient Responses to the Term Pain Catastrophizing: Thematic Analysis of Cross-sectional International Data. Journal of Pain, 24(2), 356-367. https://doi.org/10.1016/j.jpain.2022.10.001