A catastrophic labelling mistake?

By Timothy Cocks Uncategorized 14/10/2020

Interesting post from painresearchforum.org

Calls to Rename “Pain Catastrophizing” Backed by International Patient-Researcher Partnership

The Rename Pain Catastrophizing study is the product of a patient-researcher partnership between Beth Darnall, Stanford University School of Medicine, Palo Alto, US, and Andrea Anderson, lead patient advocate on the study team and former executive director of the Alliance for the Treatment of Intractable Pain.

What’s in a name?

The aim of the study is to find a phrase that captures the important aspects of fear, worry and distress associated with persistent and/or severe pain, but is less stigmatising for patients.

“This effort was guided by a fundamental understanding that, for a fraction of patients, this term is perceived absolutely negatively. We questioned whether we could do better and come together to identify a suitable replacement term that would feel more welcoming and acceptable to all stakeholders,”

That which we call a rose

The term catastrophising, first used in psychology in 1962, has a long history in the study of depression and anxiety. In 1983 Anne Rosentiel and Francis Keefe introduced the idea of pain catastrophising as part of a broader measure of pain coping strategies. In 1995 Michael Sullivan, incorporating many of Rosentiel’s and Keefe’s items, published The Pain Catastrophising Scale (PCS), leading to

“an explosion of research in the 1990s and beyond because it was the one scale that came out as being really predictive of how well people did with respect to their chronic pain problems”

But despite these clinical underpinnings, there is the suggestion that the term is being used to deny care to patients with intractable pain

“Over the last few years, as the opioid crisis became a real issue, we started to see patients removed from pain medications, and one of the ways that physicians would justify this to patients is to say that they didn’t really have pain – they were catastrophizing.”

Patient advocates involved in the study have shared experiences where that which has been called catastrophising has come to mean over-exaggeration, leading to the patient being blamed for making their pain worse, and their distress and suffering being dismissed

“People with pain, especially women, are [often] labeled as malingerers, drug seekers, hysterical, ruminators, somatizers, pain catastrophizers.”

By any other name?

The first part of the study, an ongoing collaboration between researchers and patient advocates, sought the opinion of people with the lived experience of pain, caregivers, health professionals and researchers.

A number of alternative words were included for consideration, as well as seeking additional phrases. Suggestions included pain-related distress, pain-related worry, pain-related fear and hypervigilance.

Researchers are now reviewing the initial survey results with the intention of developing a further, final survey to seek international opinion of candidate replacement terms.

Would smell as sweet?

But not everyone agrees that there is a need to change the phrase. Michael Sullivan, the developer of the PCS, has argued that there are formidable obstacles to removing the word catastrophising, and that any replacement may well come to have similar negative connotations for patients

“I find the arguments that have been put forward mostly unconvincing. There would only be an advantage to renaming pain catastrophizing as pain-related worry, distress, or fear if the alternate constructs were better understood than pain catastrophizing. This is not the case,” Sullivan wrote in a statement addressed to the study team and shared by Sullivan with PRF

Sullivan also wrote that any replacement term will eventually be considered unwelcome by patients. “Over time, the new term would carry the same semantic elements of dysfunction, deficiency, and pathology that we associate with the term catastrophizing. Any word in a language eventually acquires the characteristics of its referent.”

Sullivan nevertheless noted in his statement that he does not use the word catastrophizing with patients. “I have difficulty seeing how the use of the term would assist in achieving therapeutic objectives.”

An aside

Whatever the outcome of the study, the patient-researcher partnership approach being used is both refreshing and encouraging

“This is the result of directly partnering with patients from the inception of the study, from the idea to how it’s been implemented and how we have refined things along the way. We can be assured that the output is not only more acceptable, but also more meaningful. The whole reason any of us are doing any of this work is to help patients”

What is in a name?

What are your thoughts? What does the phrase mean to you?

Worth reading the entire post and reflecting. What do you think about some of the alternatives offered; pain-related -distress, -worry, -fear, or hypervigilance? Do we consign pain catastrophising to the linguistic litter can, or do we stick with it but seek to go back to its original use?

Interested in your thoughts and comment below

-Tim Cocks

Comments

  1. jqu33431quintner

    A quote from Dr Beth Darnell: “The fundamental take-home message, I think, is that language matters, our words matter, and the words we use can directly influence a person’s receptivity to a treatment or referral that may help them.” I have long opposed the use of the term “catastrophizing” because the PCS that is used to assess the construct relies completely on the memory capacity and imaginability of the person completing the Questionnaire. Until such time as these mental functions can be accurately assessed, the term must be used with considerable caution (or if at all).

  2. Gerry Daly

    The term ‘catastrophizing’ is an ‘operator’ created term to excuse professional responsibility where solutions cannot be found. That might seem harsh, but really, without a proper psychological assessment, it is a meaningless imposed description of any patient’s pain distress. Some better terms that might be applied might be……’ predictive pain patient concern ‘ or even….’ future pain patient concern ‘. Best not to assume the patient might be negatively imagining anything unless there is evidence of such. As an ‘operator tool’, the term catastrophizing can only too easily be abused or misused to validate a lack of applied skill.

  3. “Pain catastrophizing” has been defined initially as a “tendency to magnify or exaggerate the threat value or seriousness of the pain sensations”.
    Sullivan’s definition was: “an exaggerated negative mental set brought to bear during actual or anticipated painful experience”.
    Still another definition of pain catastrophizing was that of a “tendency to misinterpret and exaggerate the pain experience”.

    About exaggeration: This recurring theme, even in official definitions, is highly problematic. Exaggeration is the representation of something as more extreme or dramatic than it really is. Administering the PCS does not constitute making such a comparison (between representation and reality). The PCS can only measure a person’s representation of their “mental set”, using Sullivan’s words.

    Behind the claim of exaggeration there is always the risk of actually minimizing the patient’s problems.
    And despite the fact that exaggeration may occur intentionally or unintentionally, still there is a connotation of malinguering – both of pain-related emotional distress and possibly of the pain sensations themselves.

    To say that emotional distress is “exaggerated” really is not the same as to identify the presence of a clinically significant, counter-productive distress, that a person needs psychological help.

    About misinterpretation: There is not a single item in the PCS questionnaire which assesses clients’ cognitions about pain.
    For instance, “I can’t stop thinking about how much it hurts” is not a thought about pain. It is metacognition; being aware of one’s alteration of attentional processes.

    About the PCS: This questionnaire measures a person’s representation of their potential rumination, magnification and helplessness processes. These different constructs are combined and then, by mere comparison to normative data, clinicians would determine whether an individual’s emotional distress is “exaggerated” or not ?! Nonsense ! “Since other people with chronic pain say they don’t feel the same helplessess as you, since they say they don’t ruminate as much as you, you must be exaggerating !” Exaggerating what ? The pain, or the emotional distress ? It matters not, as the reasoning is flawed on too many levels to bother with this distinction. The effects and appropriateness of a person’s emotional reactions to chronic pain can only be determined on a case-by-case basis.

    The PCS does not measure what it claims to measure, which is a badly defined concept to begin with.

    Also, there needs to be differentiation of rumination vs pain interference.

  4. jqu33431quintner

    Patrick, thank you for making a detailed critique of the concept of catastrophizing and of the associated PCS.

    There is some similarity between the PCS and the VAS, insofar as both are ipsative measures (i.e. measuring yourself against yourself).

    Furthermore, both measures require the person who is performing the respective assessments to imagine worst-case scenarios, which are only relevant to the individual at one moment in time and should alert the clinician that there may be important existential issues that need to be discussed.

    The well-known VAS (the Visual Analogue Scale) relies upon the ability of the person to mentally anchor intensity of pain at the top end of the scale by imagining future event scenarios, such as “pain as bad as it can be”, “worst pain imaginable” and “pain as bad as you can imagine” [Hjermstad et al. 2011].

    I cannot think of a suitable replacement term for catastrophizing but, in my admittedly biased view, it can best be abandoned with no loss at all to the practice of Pain Medicine.

    Reference: Hjermstad MJ, Fayers PM, Haugen DF, et al. Studies comparing numerical rating scales, verbal rating scales, and visual analogue scales for assessment of pain intensity in adults: a systematic literature review. J Pain Symptom Manag 2011;41(6):1073-1093. doi:10.1016/j.jpainsymman.2010.08.016

  5. Dominic

    For many years working in a pain management program we used the scale as one of our outcome measures. We referred to it as the pain coping scale it seemed a more compassionate name for it than it’s true name. I hope this does not offend anyone. I think that might be part of what is in a name?

  6. jqu33431quintner

    In relation to my comment above, I wish to correct my assertion that the PCS is an ipsative scale. In fact, it is a normative scale that has been used to estimate the risk of catastrophic thinking for “chronicity”.

    However, the potential risk and harm to a person resulting from an over-inclusive cut-off point on the scale needs to be recognized, as noted by others commenting on this blog.

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