Editor’s note: This article originally appeared on the IASP Pain Research Forum (PRF) and is being republished here for the benefit of RELIEF readers.
Published October 4, 2020
A study is underway to canvass opinions on replacements for the term “pain catastrophizing,” following concerns from some patients with intractable pain that the term is stigmatizing and poses a barrier to quality care.
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.
Surveys have been distributed to thousands of patients, carers, researchers, and healthcare providers to gather feedback on candidate terms to rename pain catastrophizing across clinical and research settings. The study team hopes that this will lead to a replacement term that is compatible with the research behind catastrophizing, while ensuring patients feel they are taken seriously when seeking care for their pain.
“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,” said Darnall, the lead scientific investigator on the study. Further, Darnall emphasized that the main thing for her about the effort is that it will provide more acceptable language for public discourse about pain.
The initiative involves dozens of research and patient collaborators around the globe, including psychologist and pain researcher Judith Turner, University of Washington, Seattle, US.
“I’m hoping [the project] will help sensitize medical and behavioral health providers to how using this term might come across to somebody who is dealing with a severe chronic pain problem,” she said. “A replacement term that captures the phenomenon while enhancing the therapeutic alliance between healthcare provider and patient would be a really good thing.”
A long history in clinical psychology
The term catastrophizing was first used in 1962 by psychologist Albert Ellis, and later refined in 1987 by psychiatrist Aaron Beck, who is considered the father of cognitive therapy.
“Both Ellis and Beck were using this term to describe a phenomenon frequently seen in patients with depression and anxiety – they have negatively-biased cognitions that then result in their having a lot of affective distress,” Turner told PRF. “The idea was that if people can learn to recognize that they’re doing this, they can learn to challenge those thoughts and see things in a more balanced way. Instead of just seeing the glass half empty, they can focus on the part half full as well.”
Later, research by Turner and colleagues found that catastrophizing about pain was not only correlated with depression and anxiety levels, but also with pain intensity. Turner thinks that the relationship between pain catastrophizing and pain intensity is bidirectional.
“As your pain increases, that makes you more likely to catastrophize because you start to worry about all the terrible things that might happen if the pain doesn’t get better. At the same time, if you tend to catastrophize, that can make the pain worse.”
In 1983, Anne Rosenstiel and Francis Keefe, two psychologists at Duke University Medical Center, Durham, US, published the first widely used measure of pain catastrophizing as part of a broader measure of pain coping strategies. Later on, in 1995, Michael Sullivan, now at McGill University, Montreal, Canada, published the Pain Catastrophizing Scale, which incorporated most of the items from Rosenstiel and Keefe’s catastrophizing scale and added two new scales to capture additional dimensions of catastrophizing. The Pain Catastrophizing Scale now has thousands of citations in the literature and is the most common method of quantifying catastrophizing in pain patients.
“There was just 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,” Turner said.
A barrier to care
Despite these clinical underpinnings, the term “pain catastrophizing” is increasingly used to deny care to patients with intractable pain, said study patient advocate Anderson.
“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.”
For example, Anderson said she spoke with a patient whose clinician used catastrophizing to justify severe forced tapering of her pain medication.
“And when I say severe, I mean 15 days to go from 550 mg of opioid MMEs [morphine milligram equivalents] to zero. She is terrified for her life, terrified for her pain that is not managed. Her physician says, ‘I’m not going to prescribe you anymore – all of your feelings are showing you are psychologically imbalanced.’”
This misuse of the term can be devastating for patient outcomes, according to Anderson.
“Instead of being used as a term to identify some thinking that, if we come alongside and help you, might reduce the intrusiveness of pain, it’s used as a way to be reductive, and then patients feel completely harmed.”
Christin Veasley, co-founder and director of the Chronic Pain Research Alliance and a patient collaborator on the study team, agreed that the term is used harmfully.
“It’s not that the psychological construct of catastrophizing isn’t valid or important. [But patients] whose chronic pain has come about for unknown or unidentifiable reasons are often questioned, misbelieved, dismissed, and worse – they’re often blamed for making themselves worse or ‘overexaggerating’ their condition.”
Veasley noted that this is particularly common for women.
“People with pain, especially women, are [often] labeled as malingerers, drug seekers, hysterical, ruminators, somatizers, pain catastrophizers. If a woman is able to find a clinician who believes her report and takes the time to sit and earnestly listen to her history – it’s sad to say, but right now, that interaction in and of itself is therapeutic for many.”
Searching for replacements
The Rename Pain Catastrophizing study consists of two opinion surveys – one aimed at patients and caregivers, and the other at researchers and healthcare providers. The first wave of both surveys, which completed data collection in August, had the goal of collecting opinions on the current term as well as on some candidate replacement terms.
“There were [about] 12 different [replacement] options drawn from the literature and from the study team – pain-related distress, pain-related worry, pain-related fear, hypervigilance – different terms that explain aspects of, or directly overlap with, what we call pain catastrophizing,” explained Darnall.
The decision to include candidate terms such as “pain-related distress” was based on work by Geert Crombez, University of Ghent, Belgium, and colleagues, who found that “the thing we call pain catastrophizing really overlapped much more than expected” with that term, according to Darnall. “But we didn’t want to assume that all of our candidate terms were comprehensive or sufficient, so we asked if people had a better term that we hadn’t considered.”
Now that the results are in from the first wave of the surveys, the study collaborators are moving toward the next steps.
“Since reviewing the results for the first survey wave, the decision was made for a smaller subgroup of the research team – psychologists – to meet and discuss the proposed terms to ensure they align with the conceptual and theoretical underpinnings of the construct. The output of this discussion will be a second and final survey distributed internationally,” according to Darnall.
“Mostly unconvincing” arguments?
For his part, Sullivan, who developed the Pain Catastrophizing Scale, is not particularly wedded to the term pain catastrophizing. However, he disagreed that the candidate terms are interchangeable with it.
“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. (Darnall noted that this is why the subgroup of the research team is taking the approach described above that will aid in the construction of the second survey.)
“The ‘sense of knowing’ that is currently shared in the practice and research community about pain catastrophizing will present a formidable obstacle to convincing researchers and clinicians that a change in terminology is required,” Sullivan added.
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.”
On this point, Darnall agreed.
“People with chronic pain already often feel stigmatized just for having chronic pain, and to hear a descriptor applied that carries a connotation that further validates those feelings of stigmatization is unhelpful,” she said.
However, Darnall also emphasized that for her, the benefits of renaming the term are even more about today’s much wider dissemination of news and information about pain science to large numbers of patients and other members of the public.
“It is in recent years with more information being accessible online – podcasts, social media – that a term that may have been relatively benign when used in a scientific context is now out in the world, so there’s more opportunity for people to respond to it,” she said.
An exemplar of patient-centered research
Darnall hopes that the study can be a model for producing patient-centered research going forward.
“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.”
“There’s no grant money in this. No one’s earning anything doing this work. We wouldn’t be doing this if we hadn’t heard [patients] telling us how much it hurt. That’s why we do this work – to prevent suffering.”
Darnall also hopes the study makes clear the importance of terminology in patient care.
“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.”
Patients, carers, researchers, and healthcare providers interested in contributing to the study, including the second wave of surveys, can find information at the study website here.
Jayden O’Brien is a PhD candidate at the University of Sydney.