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What Do Patients Want to Know About Pain?

A novel mixed-methods study shows that patients value learning that pain does not equal damage, that there are multifactorial influences on pain, and that pain is a heightened protective response that can be changed.

by Kai Karos

15 October 2021

PRF News

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A novel mixed-methods study shows that patients value learning that pain does not equal damage, that there are multifactorial influences on pain, and that pain is a heightened protective response that can be changed.

Pain education is an integral part of interventions to alleviate pain, with the goal of helping people with pain reconceptualize what pain actually is. Several campaigns such as Pain Revolution and Tame the Beast use pain education techniques to change a person's understanding of pain and have been shown to reduce pain, increase physical performance, and decrease perceived disability as well (Moseley and Butler, 2015).


However, the content of these pain education interventions has frequently been guided by what scientists and clinicians deemed the most crucial material to learn about pain. While this approach ensures that the latest scientific advances and theories in pain science inform pain education, it excludes the people that pain education is ultimately for: those living with pain.


A new study conducted by Hayley Leake, a doctoral candidate and physiotherapist at the University of South Australia, Adelaide, and colleagues now addresses this issue. The researchers used a mixed-methods survey, combining qualitative and quantitative data, to investigate which concepts in pain education are valuable to patients and why.


The study found support for several of the main objectives of pain education. Patients found value in most concepts taught during pain education and especially in three core themes: The idea that pain does not equal damage; that there are multifactorial influences on pain; and that pain is a heightened but changeable protective response. However, there were also a few surprises. For instance, the understanding that clinicians and researchers have about some of the terminology they use with patients can differ in important ways from how the patients understand things.


“This is a good study – a very nice combination of two methodologies, which is interesting, and it includes a fairly big sample to make sure there is enough information,” said Johan Vlaeyen, KU Leuven, Belgium, who was not involved in the study.


The research appeared in the October 2021 issue of PAIN.


Putting the patient front and center

Leake told PRF that part of the motivation for the study was to simplify pain education, as it is often too “convoluted and complex.” The goal is to find out “what is the minimum amount of education required to help change your mind,” she said.


The authors also wished to tailor pain education to individual patients and their values. “We are putting patients forward as the experts on their condition, which they are, and centering our care on what people value. We are starting to realize that patients are not passive entities who we put our therapies onto, but we work together,” Leake said.


Lauren Heathcote, a postdoctoral research fellow at Stanford University and senior author on the paper, echoed this sentiment.


“In some of our earlier studies, we asked academic and clinical experts what they thought patients should learn about pain. What’s novel about this study is that we directly asked the people who live with pain what was most helpful and meaningful to them. In this way, we are placing patients’ lived experience at the heart of our research. We are learning from the greatest experts of all.”


Making pain education more patient centered could also directly benefit learning, Vlaeyen pointed out, because it makes it possible to cater the content of education to the prior expectations of the patient.


“Learning boils down to creating a surprise effect: Wow, is that really true? That is how people learn best. So it is important to first know what people expect and know. Otherwise, you cannot surprise them,” according to Vlaeyen.


Integrating the qualitative and the quantitative

To this end, patients who had consulted a physiotherapist (co-author Lorimer Moseley, University of South Australia) for persistent pain received an online survey six, 12, or 18 months after completion of their treatment. The treatment was tailored to the specific needs of the patients but generally focused on pain science education, with the aim of reconceptualizing pain. The treatment also focused on development and implementation of a study program to restore function via goal-oriented physical activity. Only patients who indicated that their pain had improved were included in the study.


The survey included qualitative and quantitative questions. The qualitative questions were open ended and asked patients to describe the pain concepts they felt were most important to their recovery. The quantitative part of the study presented 11 predefined pain target concepts (i.e., learning objectives in pain education) as they are used in research and clinical practice. Patients were then asked how important they thought the different concepts are. Finally, the researchers integrated the different sources of data.


“We tried to use the qualitative data to make sense of the quantitative data. Why did the patients rank certain concepts higher than others?” said Leake.


“The mixed method really takes advantage of both the quantitative and the qualitative. I really like qualitative work. I think that we can learn things by asking open-ended questions and finding new answers that we did not know to put on our survey items in quantitative studies,” Leake added.


What patients value (and what they do not)

Ultimately, a total of 97 patients completed the survey. The qualitative part of the study identified three overarching themes as being most relevant for patients in their recovery: Pain does not mean my body is damaged; thoughts, emotions, and experiences affect pain; and I can retrain my overprotective pain system.


These concepts were also highly valued in the quantitative part of the study. Here it became clear that all clinician-derived target concepts were at least rated as somewhat important. This is good news for current pain education approaches because it shows that concepts that clinicians and scientists focus on are actually relevant to and valued by patients.


Integrating the qualitative and quantitative data, the authors also tried to make sense of why patients highly valued those three target concepts. The concept of decoupling pain from tissue injury is also a core aspect of the pain field's biopsychosocial understanding of pain, and its value might come from reducing fear of injury and reducing avoidance of painful behaviors. This is in line with the predictions of the fear-avoidance model of chronic pain, which was first proposed by Vlaeyen and Steven Linton in 2000. For example, learning that pain does not equal damage might motivate patients to expose themselves to otherwise feared activities.


The value of the concept that thoughts, emotions, and experiences affect pain might come in part from its validation of psychological treatments for pain.


“One of my favorite phrases that came out of this study was, ‘I took psychology more seriously.’ That was the outcome, and the most important thing for me,” Leake said. “As a physiotherapist, if you come to me and you have pain, and I can deliver pain education, and we can talk about pain and learn about it, if that convinces you to go see a psychologist, then I think I have done my job well,” she added.


At the same time, this concept also broadens the horizon regarding possible targets for change, as patients realize that they can affect their pain by focusing on factors such as their thoughts, emotions, and environment.


Surprisingly, patients did not consider the word “context” very meaningful in this regard, even though clinicians and researchers commonly use this word to describe the multifaceted influences on pain.


“Pain is dependent on context. That is something that a lot of people think is very important, but it was barely rated at all as important by patients,” said Leake.


That discrepancy likely reflects semantics, as patients simply do not use the word “context” in this way, demonstrating the importance of using patient-centered language. “There was not one word that they used to describe what influences pain. They said that lots of things influenced my pain,” said Leake.


Lastly, the third concept, learning that an overprotective pain system could be retrained, opens the door for hope and change. This is because it puts patients back in charge of their own recovery and provides a strong sense of agency; no longer are patients viewed as helpless and passive victims of their pain.


Taken together, these data show that patients value learning about certain core pain concepts, but especially so when it can be translated into action and restores a sense of control and agency for the patient.


Open questions

Several unanswered questions remain about pain education.


First, how can current pain education approaches be streamlined to best reflect the core concepts valued by patients? Second, is it sufficient to focus on the main themes identified in the current study? Here, it's important to note that the research only focused on patients who improved, and who were treated by the same clinician. But what about patients who did not improve from pain education, or who are treated by another clinician? Would they not value the concepts pinpointed by the study? Were patients valuing other concepts that researchers are not even thinking about yet?


“It is not possible to know exactly what the meaning of the current results is,” remarked Vlaeyen, “It is a nice study, valuable to do and informative, but still a lot of questions remain unanswered.”


He also cautioned that in his experience, pain education can be a good starting point of treatment, but it is rarely enough.


“Pain education can be useful, but is certainly not sufficient for most people with persistent pain,” said Vlaeyen. “It is important to not only have instructional learning [pain education], but also experiential learning, so basically pain education plus.”


Leake expressed a similar sentiment.


“If you are just providing information about pain, there can be this empty space afterwards like, ‘So what do I do with that?'” she said. “It is not always intuitive how you apply that information. Clinically, providing the link about what to do, or experiential learning – providing activities where what you have taught can be relearned through experiences – would be something that I have seen is missing.” Consequently, the most important concepts for patients are likely those that “patients can translate into action.”


Leake said that she and her colleagues are currently looking at data from patients who did not improve.


“It is different from what we found in the improved patients, for sure,” she told PRF. “It would be a nice complement to this study because it does tell a different story.”


She added that the unpublished data from "non-improved" participants suggest a preference for concepts that validate their pain. For example, the concept "all pain is real no matter what is causing it" was rated as "very important" by 68% of the not-improved cohort, compared to only 24% of the improved cohort.


As it stands now, Leake said, the current study provides an important “foundation for refining pain science education interventions to focus on pain concepts deemed most valuable to people with pain and to use patient-centered language to best communicate these concepts.”


Kai Karos, PhD, Centre for the Psychology of Learning and Experimental Psychopathology, KU Leuven, Belgium, and Department of Clinical Psychology, Open University, Heerlen, the Netherlands.


Image credit: garloon/123RF Stock Photo.

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