Statement from Andrea Anderson, Co-author.

As former Executive Director of the Alliance for the Treatment of Pain and a patient advocate since 2017, I frequently encountered the frustration of many patients with the term “Pain Catastrophizing”.

One thing I noted was that Dr. Beth Darnall was often attributed as an originator and/or perpetuator of the term, as she was providing a great deal of public education on why it was important to address this issue. Wanting to learn more about this, I wrote to her, seeking to understand the many questions surrounding the term ‘pain catastrophizing.’

I inquired if she was the creator (she was not), what the term meant to her, and why she thought it had become so offensive to patients. Dr. Darnall responded graciously with a multiple-page letter, explained the science behind the terminology and attached multiple references for me to review. I asked her if I could take 30 days to read it through and get back to her, which I did.

In so doing, I developed an understanding of the terminology, which had been taken from early work in cognitive psychology. Albert Ellis originally developed what came to be known as Rational-Emotive Therapy (RET), based on the assumption that psychosocial disorders, such as anxiety, were caused by irrational or faulty patterns of thinking. It was brought into the field of pain in the 1980s. Then, in 1995, Sullivan brought it forward further with the publication of the Pain Catastrophizing Scale (PCS). I learned that the phrase was a “term of art” in the field of pain psychology.

Further, I became knowledgeable about the methodology behind its application, informed regarding the scoring metrics and how they could identify areas in which patients struggling with severe pain could potentially be helped. The ideal, initially, was that a trained and effective pain psychologist could assist in reducing the intrusiveness of pain if the numerals scored high enough on the PCS scale to warrant intervention.

However, with the opioid reductionism that began in 2016 and the shift towards the psychologizing of pain, we began to see patients told that they did not really need pain treatment, and often their pain was dismissed as “catastrophizing.” This “weaponization” of the term became a significant harm, one which I observed in multiple situations in patients with whom I was assisting.

Frustration with the term grew to an overwhelming chorus across social media platforms, and Dr. Darnall and I discussed it many times. She understood that the term was experienced by some patients as ascribing blame and judgment. As a psychologist, she had a keen awareness of the stigma patients experience around pain (e.g., it’s invisible, often not believed), and with patients being referred to psychology for treatment, they were often left feeling as though the message was “their pain isn’t real” or “it’s purely psychological.” The term ‘pain catastrophizing’ became an additional layer of stigma for some people.

There has been an argument that the term was never intended to be used with patients directly, but regardless, it has been. Furthermore, with pain catastrophizing research gaining greater attention in the media – and with Dr. Darnall being at the forefront of that research-- she wanted to better understand the issue through a patient-centered effort.

In a multi-stakeholder collaboration, we decided to launch a survey study to understand patients’ perceptions of the term and its impacts on them. The survey asked patients to choose from a list of suggested terms that we thought might be helpful through a quantitative method, ‘but also provided a “free-text’ box to allow for qualitative analysis, conducted by Dr. Fiona Webster, that would allow patients to tell us exactly what they thought about the term, how it was currently being used in pain treatment, and what type of nomenclature they thought would be more helpful to replace it.

As a result, more than 3400 patients from forty-seven countries participated in our survey, the results of which showed:

•Close to half had heard of the term

•One-third described it as problematic

•Twelve percent reported the term had been applied to them and that it was a negative experience.

This result showed that these are critical issues that require attention and change. Patient-centered language should be inclusive and not stigmatizing.

While we did not recommend a replacement term, “Pain-Related Distress” was noted to be a suggested term for use in the media, public communications, and in patient care, and what I hope will be adopted in the future.

In summary, the interaction between Dr. Darnall and myself, as well as all the contributors to this project, which included several pain advocates and persons with lived experiences of pain, as well as dedicated researchers, quantitative and qualitative analysts, authors, and others, has advanced this topic substantially, and we are seeing it discussed more and more in the professional literature.

We also have more plans to continue this work and hopefully discontinue what we think has become unhelpful language and hope to establish truly helpful, meaningful, non-stigmatizing language to care for people in pain.

Thank you for the opportunity to present this collaborative research effort to your Journal Club.

Andrea Anderson