Interesting post from painresearchforum.org
“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.”
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