Welcome back to the Healing Pain Podcast with Hayley Leake, PT, PhD
In this episode, we’re talking about pain education and specifically asking the question, “What do patients value learning about pain?” Our expert guest is physiotherapist and pain researcher Hayley Leake. After working clinically for six years, Hayley embarked on a PhD mission at the University of South Australia with Professor Lorimer Moseley’s research group. Her research aims to optimize pain education for adolescents and adults living with chronic pain.
Pain education is a popular treatment approach for treating persistent pain that involves learning a variety of concepts related to pain and is thought to be an important part of recovery. In this episode, we discussed targeted concepts and themes that seem to be the most important of value to those living with chronic pain when delivering a pain education intervention. Without further ado, let’s begin and meet Physiotherapist and Pain Researcher, Hayley Leake.
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What Do Patients Value About Pain? With Hayley Leake, PT, PhD
Hayley, welcome to this episode of the show.
It’s great to be here.
Thanks for joining us overseas. I’m excited to talk to you about all your work, but we’re especially going to focus on this one paper and manuscript that you have printed in October 2021 Journal of Pain. The title of that paper is called What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education. The value of learning about pain is what drew me into that paper. I know this is part of your PhD work that you’re going to be completing. Congratulations. What about this topic specifically drew you into it?
I’m interested in pain science education and there’s a big literature around that. Traditionally, most of that work or the content of the education has been created in this top-down method. Either clinicians or researchers have come up with these important concepts that we should include in pain science education interventions or at least in the ones that are researched. That’s quite a natural way that we’ve been doing things for a long time, but I thought what would be a lovely question and way to approach that would be to look at what patients value.
There is some literature that has done some qualitative analysis of pain science education interventions and asked patients afterward, “What did you think of that?” Sometimes they explain that, “It was interesting, but it wasn’t relevant to me,” or it wasn’t the right fit for them or it was too long. The question is, “How can we make it more relevant or simplified?” I like this idea of the minimal important dose you can provide because sometimes the pain science education interventions that are at least included in research can be long and detailed.
There’s quite detailed information about neurotransmitters like neuroscience. That could be interesting for research, but it might not be that relevant for the patient. That was the impetus for asking this question, “How do we make something more interesting to the person who is receiving it by asking them, ‘What is it that you value?'”
One way to go about that would be to speak to people who have had an experience of pain science education that have found some value in it. We looked at only those people who had self-reported that they recovered in some way. That could be defined in however they want that to be. We used a mixed-method approach to try to tease out what concepts they valued and why they valued those concepts.
There’s a lot in your intro. We’re going to pick apart that a little bit. What does that mean in more layman’s terms for those who don’t know what a mixed-method approach is?
A mixed-method approach is one in which you look at two types of data. You might be looking at quantitative data, data in numbers, and qualitative data, provided in words. Instead of choosing one or the other, you take both qualitative and quantitative data. You try to use it to answer a question by combining it in some way that will provide a richer answer than each form of data independently.
As I think back on that body of literature you mentioned, there are few qualitative studies on pain education, right?
Most of the time, those studies, the few that are there, tend to be maybe an hour of pain science education provided in a lecture-style and then asking people afterward what did you think of that either in an interview or survey. At least what we’ve done is we’ve looked at data from people who have had a series of different one-on-one style interventions with a clinician rather than perhaps more pain management program lecture style.
Were these patients part of a multidisciplinary treatment where all the practitioners were informed in pain science education or more they saw a PT for twelve sessions and the PT was qualified in pain science education?
It’s the latter. These patients were referred to a clinician with experience in pain science education who provided differing lengths of interventions with them one-on-one, but then also they were referred to other clinicians for the relevant treatment they might require. They may have had physiotherapy or psychology. The similarity that they all have was they all started with a pain science education approach that was individualized.
They reported that they had some benefit from their recovery. They benefited from the treatment and they’re now self-identifying as recovered.
They filled out this survey somewhere between 6, 12 or 18 months after they had initially seen the therapist. They were asked how they are now compared to when they first started. It’s quite a vague question where they could indicate if they were the same, a bit worse, a lot worse, a little bit better or a lot better. We only took the data of the people who indicated they were at least a little better, a lot better or recovered.
We have the data of the people who have indicated they had not improved. I’m interested to look at that at one point. We can chat about that after. In particular, for this study, we wanted to focus on the people who had found some value in pain science education or at least had recovered. It may have been related to that or it may not. It’s not a causative study at all. It’s exploratory.
Professionals always want to know what was the dose of pain science education. Do we have any idea from the participants that you used?
That data is not hugely clear in this. We don’t have the exact intervention that they were provided to each person because it was about 97 participants. We know that they received a certain range of interventions and pain science the times that they saw the clinician.
It’s total contact time.
In a range, we don’t have specifics exactly. We have some information about what they have done and what interventions they have been engaged with since treatment. Did they have surgery, more pain coaching, physiotherapy or psychology? That’s about what we have for that data.
Do you want to tell us about the quantitative aspect first and share some of the more juicy tidbits about that before we move on to the qualitative? The qualitative part is what interested me in the study.
The participants were provided a survey that had both qualitative and quantitative. They answered the qualitative first, but I will chat about the quantitative. They were provided with a series of statements or target concepts, learning objectives you might say, that at least clinicians tended to provide that were coming in the pain science literature.
They were asked to rate how valuable that concept was for them on a scale from very important down to not important at all or I disagree with it. If they didn’t know what it was, they could indicate that as well. The results of that gave us a sliding scale of how valuable those concepts were. If we look at that graph, we can see the concepts that were rated as the most important in that quantitative element seem to be the ones that have to do with learning that the body can be overprotective, but that can change in time, so it can become less protective.
The ones that fall towards the lower end of the scale of importance tended to be ones where they discussed things like dangerous senses in the body as opposed to pain sensors. This is something that often comes up in pain science education. That might be important for creating foundational knowledge, but it doesn’t seem to be rated very highly when we ask what the most important concepts are for people.
That’s interesting because a lot of people say, “We should never say there are pain sensors versus dangerous sensors ever and to make that distinction for people.” What I appreciate about this work is this is what patients value. If someone values calling something a pain sensor and it has a positive impact, then we might want to consider how we frame the material.
The thoughts would be, if we call it a pain sensor, then maybe that continues to perpetuate this idea that pain was created in the body tissue rather than in the brain and nervous system. Maybe it holds value and it doesn’t detract from that in that way. We could tease that out a bit more. I found that quite interesting that that was rated lower.
What I was surprised by is that the one that had the lowest rating of very important was that the pain is completely dependent on the context you were in. We often talk about the value of that and the qualitative information tells us a bit more about why that might be rated so low. That was quite interesting in putting numbers on the difference.
In that one, 10% of people said it was very important as compared to 99% of people who rated the top one as very important, which is our body learns pain, so we end up getting pain when things are not dangerous. We become overprotected. That 99% of people of 97 participants rated that as very important. We can look at that and say, “There’s something in that that holds a lot of value as compared to some of the context, which is very low.”
There are different ways to deliver pain science education to explain pain and all different theories and models now. All of them, at some point, do talk about sensors and receptors on a biological level, which I’ve noticed some people have problems and challenges with. They may not see value in that, but conversely, maybe you have a high school Biology teacher who gets that they might have value in that.
That’s always going to be the case with pain. Any kind of education has to be individualized. You’ll have a scale of someone who is happy with the minimum and someone who wants a lot of details. It is helpful as clinicians to have the breadth of understanding so that we can tailor in any way. If we’re looking for what is the average and trying to find where that is, maybe it falls somewhere with where these concepts are valued. That information could be necessary as foundational knowledge, but it doesn’t rise to the top when we look at the most important concepts.
We’re trying to increase someone’s health literacy around pain with these types of interventions. Did your study mention or had any way of identifying the educational background of the participants?
We asked at the start what the highest level of education was. That’s the detail we have on health literacy. Of that, 1/4 has at least a high school education. Above that, 14% had a Bachelor’s degree, 13% had a Postgraduate degree and 9% had a trade. It was a fair range in terms of the educational background that people had.
For most of us, that’s more like real life, where we’re seeing a diverse group of people in practice. I like to see diversity in the literature because when things are homogenous, it makes me a little concerned about, “This might not work for another group.”
It’s difficult to generalize.
Dive into the qualitative literature first because qualitative literature and studies typically look for themes. I love the idea of themes. Especially for newer therapists, it helps give them a flavor of, “What is happening? What can I expect? How do we approach this?”
For this study, particularly, we wanted to know what do people value, but we also wanted to know why. If we only had that quantitative data saying, “This is the rankings of importance,” we would have to extrapolate our own beliefs about why, but we want this to be informed by what patients value. The quality of data allows us to do that.
What came about from that were three main things that reflected the quantitative but explained it more. The first one in that is this idea that pain does not mean my body is damaged. When we looked at the quotes that people provided about that, they described this idea that the body was safe and that they found a lot of value in feeling the body was safe despite it being painful.
They said that was a foreign concept and difficult to take in and it took time. I like this data because it has been quite a long time since people have been treated. It’s between 6 and 18 months since treatment. It’s not about a week or a day later after receiving education. It gives them time to try to integrate that information into their lives and understand what role it might play.
In this theme, what came about was this idea that, “How come you believe that your pain is not damaged? The pain doesn’t mean your body is damaged.” Learning about the healing capability of the body was important. That provided them with a compelling argument that maybe the body might not be damaged because the healing does happen over time. I’ve seen that come up in some other data as well. That’s an important space for us to explore further as this is like, “What is a general person’s understanding of the healing capacity of the body and how that works?”
This idea that pain doesn’t mean my body is damaged justified them to be allowed to move despite having pain. With that idea that you’ve got permission to move, it’s okay to move even though it hurts. When we put this together with the quantitative and we tried to understand that value, what came out was, “That was important that I can now move, even though I have pain because my body is safe.” It reduced their fear and worry around that. That was the main value that was placed on that theme.
That right there is important because you mentioned the study looked at participants. How many months?
It’s between 6, 12 and 18 months.
Those themes start to tell you that the reconceptualization has stayed with them over the long haul, which is good. A lot of treatments have the treatment effect and wane after a while for some things.
We wanted to know how they would describe these in their own language because it was a lot further past. We’re hoping they’re not just giving a language that they’ve been provided that they’ve had a chance to integrate that into their life and reframe it in words that stick with them. For some of the qualitative excerpts, we can look at those like, “Maybe this is some wording that is useful in a way that we might want to communicate this concept.”
Do you find yourself using some of the qualitative quotes and terminologies almost when you’re speaking with patients in the rest of your research?
I do. Some of the other research I’m doing is on adolescents and their language as well. That’s important because if we have an education that is aimed at a young person, who is a teenager that they’ve made sense of, we will hope that that would cut across a lot of different education levels in adults. There’s a lot that can be transferred between the two or at least learned from that pediatric space and brought to the adult space rather than the reverse. At least young people think of cool and engaging things, and maybe we can borrow that as well.
The second thing that came out was this thing, “Thoughts, emotions and experiences affect pain.” People talked about that with the value of understanding that, “My stress is impacting my pain. It has something to do with sensitization of the nurse that they brought in that science edge of it.” They spoke about, “This was valuable because it gave me a reason to engage in psychology and then that helped me.” I personally love that. If I went around to a new patient and then anything I can talk about in that idea of context influencing pain engages them to want to see and be treated with psych skills, I’ve done a good job because I’m not trying to do everything myself. I’m trying to tie everything together and provide an understanding of why that would be valuable.
For me, that coming up as a theme in the qualitative data is interesting when we think back to the quantitative where the lowest-ranked concept was, “Pain depends on context.” That didn’t hit the mark but the idea that thoughts, emotions and experiences affect pain was highly valuable. To me, that might infer that we’re not using the same language or maybe it’s not just, “Everything in my context impacts my pain. I’m valuing that my thoughts, emotions and beliefs are impacting my pain. That’s the most important part of my context that I can relate to.” I found that quite interesting and perhaps that’s what we should be targeting in our education rather than using this broad terminology of context.
Context is a hard word for people, even for professionals like, “What does that mean? Is the lamp here sitting next to me part of my context? Is that part of my pain?” Is it something a little more tangible like, “I realize I have negative thoughts? How do those negative thoughts impact my pain?”
You would have patients who start having experiences of that as they’ve experienced that their stress, worry and pain has increased, or they have felt and found ways of managing stress and then pain has reduced. Being able to have that experience to go with it over time then brings you back to thinking, “That must be valuable.” As you say back to the lamp, it’s hard to identify when the lamp influenced pain. I thought that was lovely.
The final theme in the qualitative data was, “I can retrain my overprotective pain system,” which has quite a bit in it. It includes this idea that, “Maybe my pain is protective and maybe it’s overprotective.” People spoke about this idea that the terminology they used was either overprotection or faulty protection. That was nice to see those words. They identified the brain and the nervous system are responsible for overprotection. They often described that in place of it being a body part that is at fault.
The first thing they said was, “My body is not damaged.” It’s taking away this previous conception that, “My body is damaged outside of pain.” Here, this theme provides the value of replacing that with something instead of taking away an idea. For example, they would say things like, “CRPS is a problem of your nervous system, not your leg.”
The most important concept was learning, “My brain was the problem, not my arm.” Identifying that another part of the body still might have something going on that is not normal, that’s difficult when we speak and say, “There is no damage. You’ll find there are no issues with your body.” You’re like, “It feels like something isn’t right with my body.”
How could there not be something wrong with my body if I’m feeling this?
It’s not normal to be feeling pain all the time. It’s hard when people hear, “It’s totally normal.” That seems to be the value they placed here in this concept was the idea that, “I have an overprotective pain system. That means that my brain and my nervous system are overprotecting me. There is still something in my body that I can lay fault in, in a way if I’m not going to lay fault in my painful arm.” They use metaphors we’ve seen before, like dodgy electrics.
They spoke about that this was valuable, particularly because it gave them a goal of what to do. The goal was to reduce or retrain that overprotective nervous system or brain. That was the value they placed in this. It was, “It gave me something to do and an aim to focus on. It gave me agency because I felt like I had control over that.” That was the explanation for why they valued that concept.
The three themes that came out of that were, “Pain does not mean my body is damaged. Thoughts, emotions and experiences affect pain.” The third is, “I can retrain my overprotective pain system.” It’s three critical pieces. I often wonder like, if we focus on those three things but go deep on each of those three, would it be better than going through maybe the ten things that we think are most important?
Yes, potentially. A lot of educational literature would tell you it’s pretty hard to walk into a clinic and walk away with ten important concepts in your mind. It might be more efficient or effective if we are aiming at a smaller number but a deeper understanding, especially once that people have already said they value and they have linked that value to an outcome. It’s almost like they value these because there’s something they can do about it or each of the things gave them something to do or not do.
It’s often to do, “Pain doesn’t mean nobody is hurt. It’s okay that I can move, even though it hurts. I can do something. When I do that, it probably continues to reinforce that message that I’ve learned.” I’m assuming what’s coming out of these themes is that they’re linked to an explanation for something. They come out of 6, 12 and 18 months. I assumed in a way that there had been some more learning that has gone over those months rather than these concepts being spoken to them, but they’ve been able to integrate them into their lives.
Oftentimes, in qualitative research, within the themes, sometimes there are these sub-themes that are occurring. They are often not in a paper because qualitative literature takes more words and there are not so many words that we can use in the paper. As people are reconceptualizing, they are realizing, “My body is not damaged. This is my brain.” CRPS, “It’s not my arm or leg. It’s my brain.” We’re all excited by that. Did we lose the theme that the body part is still important to train as you’re retraining your brain? Retraining the pain system, your arm or leg is part of that pain system.
I’m thinking back to looking at all this data if that was in there. This has been nice with this data. We collected it through a method of a survey online. The way that the qualitative data was captured was by answering a question on a keypad. What would be lovely would be to do interviews where you can get richer, deeper data. This is thinner.
We did have 97 participants responding. We had a large number of people but thinner, smaller data. What would be nice is a smaller number of people with deeper data, where you could get those kinds of things because we’re describing the cream of the top of like, “What is one thing that you value rather than explaining that fully?” That did fall out, at least in here if it was there, the value of what you do with the body part that hurts.
Especially as physios, we want to make sure we can connect the brain and the body. It’s all practitioners, but all of us should be connecting the brain and the body.
The only thing that I can think of that came out of these data relating to that would be the confidence to move the body part that was painful. That was about all they described in that sense of describing the body part that was painful.
Confidence is a big part. If you can increase someone’s confidence that they can move, the body part is part of that. Were there other qualitative papers that were part of your PhD, or similar to this or was this one specific that you did the mixed methods?
I’ve got one now that we’re finishing up that is looking at young adults, 18 to 25-year-olds. It’s a slightly different population. It’s a population that can sometimes be a little bit left behind because these are young adults who experienced pain initially in adolescence and then they are transitioning to the adult pain service, which can be quite a complicated space to transition into.
We’re looking at how they understand pain to work. We’re seeing some similar things come out. The one thing that is front of mind now is the idea that, “Can the body heal or not?” They are a bit unsure about, “Does my chronic pain mean that I have an injury that’s never ever going to heal and will always be actively injured or not?”
That theme, “Pain does not mean my body is damaged,” they get my body is not damaged, but how does that relate to healing is what you’re saying. Technically, the word heal means whole, but someone’s conceptualization of heal could mean the cut on your knee scabs over and heals versus, “Does healing mean that I have now transitioned to a place in my life where I can overcome what I was facing?”
That’s exactly right. The title of this show has healing in it. You’ve looked into this idea of healing. That word is used in different ways. When a young person would say, “I’m never going to heal completely,” what does that mean? Does that mean that if you conceptualize your body as damaged, the healing process won’t occur, or is it that because while you have pain, you feel like you’re not healed? There was one young person who wrote this down, “I know I’m not going to heal because I’ve got a scar. I’ll never heal completely.”
We think of scar is healed. Even people will say, “It’s scarred over and healed.”
That’s the endpoint of the healing process. That’s like, “Good job. You’re done.” Whereas for them, they were like, “I’ve got a scar, so I can’t heal fully.” That makes me want to explore this concept of, “What does it mean to heal?”
That’s why I like the qualitative part because I feel the qualitative part intends to bring the richness of the experience into the science and data. Validated objective research in quantitative research is needed, especially with pain since there is this experiential part of it and different people have different experiences with pain. The qualitative bring that richness into data. I feel like when I read a qualitative study, I can more readily take that and use it with the patient that I’m going to see in the next 24 hours.
The experience of pain is so complex. If the only way we’re going to measure it is because you’re at a ten intensity scale, then we’re going to miss a lot. Consequentially, the treatments for pain are also complex. If we’re going to evaluate how well they’re working, we’re going to miss a lot if we only do that using quantitative measures. Qualitative is valuable to understand what we’re doing if it’s hitting the mark. That’s what I’m interested in, “How do we optimize what we’re currently doing?”
How would you suggest we take the data from this study and optimize it for our clinical practice? There are PTs reading this and they are like, “These things are great. Pain doesn’t mean my body is damaged. Thoughts and emotions affect pain. I can retrain my overprotective pain system.” How can they take that and start to use it in practice?
It should always be individualized if we’re trying to figure out where we start with pain education. It should be, “Start with a conversation with the person in front of us about what they currently understand.” From there, we can start off focusing on these concepts as a nice starting point for education. We can use some of the languages here to try to meet patients where they’re at with the language they’re using back to us.
That would be a nice way to start an education intervention. Although this is an exploratory study and we can’t say if these concepts are more effective at improving knowledge or outcomes, but their value is important. This could be a lovely place to start if we’re trying to optimize and find a minimal and clinically important dose of education.
I encourage everyone to read the paper. It’s in October 2021 Journal of Pain. The title is What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education. Hayley, it has been great talking with you on this topic. Thanks for joining us. Please, let everyone know how they can learn more about you and follow your work.
I am most readily available on Twitter @HayleyLeake. That would be the fastest place to find me. Otherwise, if you google me, you’ll find my email somewhere.
They can find you on NeuRA.edu.au. If you want to reach out to Hayley and learn more about her work or ask her some questions about pain science education on her study, you can find her there. I want to thank everyone for joining us. Make sure to share this episode with your friends, family and colleagues on Facebook, LinkedIn, Twitter, Instagram and anywhere people are talking about pain science education and the reconceptualization of pain. We’ll see you in the next episode.
Thanks, Joe. See you.
- Hayley Leake
- What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education
- @HayleyLeake – Twitter
- @HayleyLeake_ – Instagram
About Hayley Leake
Hayley Leake is a physiotherapist and pain researcher. After working clinically for six years, she embarked on a PhD at the University of South Australia with Professor Lorimer Moseley’s research group. Her research aims to optimize pain education for adolescents and adults living with chronic pain.