Welcome back to the Healing Pain Podcast with Dr. Laura Simons
Pediatric chronic pain is a significant problem with conservative estimates that somewhere between 20% to 35% of children and adolescents are affected by it worldwide. Pain experience in children hospitals is known to be common but is under-recognized, often under-treated, with more than 10% of children who are hospitalized showing features of chronic pain. Although the majority of children that report chronic pain will not be permanently disabled by it, pediatric chronic pain patients often require intensive psychological as well as physiological interventions. The total cost as our society in the United States is somewhere in the upwards of $20 billion, I’m sure globally that’s much more.
Here to speak to us today is Dr. Laura Simons who is an expert and working really at the intersection of child psychology and chronic pain. She is an Associate Professor in the Department of Anesthesiology, Perioperative and Pain Management at Stanford University School of Medicine. In addition to an active program of research, she works in the clinic evaluating and treating children and adolescents who present with chronic pain. She has developed an exposure-based intervention for youth that have chronic pain and also integrates neuroimaging into her program of research to gain a better understanding of the ultimate psychological processes that can occur in children with chronic pain.
Healing Child Pain Begins in the Brain with Dr. Laura Simons
Dr. Laura Simons, welcome to The Healing Pain Podcast. It’s great to have you here.
Thanks for having me. I’m delighted to be here.
My followers on this podcast, there are clinicians like physical therapists, psychologists, social workers, nutritionists, physicians, chiropractors who follow, and of course there are also those who are seeking pain relief or looking for information to really empower themselves. They’re familiar with the concept of 100 million Americans have chronic pain and it’s a global problem. Really my podcast and I think the greater healthcare world out there has really focused on adults with chronic pain. We haven’t put as much attention as we should on children. A good question to start with is why has there been less focus on kids and adolescents?
There are a number of reasons that childhood chronic pain has not received a lot of attention. I know often when I see people, when I tell them what I do and what I study, they say, “Children have chronic pain? I didn’t even know that was a thing.” I think that we’re really in the infancy of understanding this process and recognizing that it does evolve as early as childhood. Even in the 70s and the early 80s, we didn’t think that infants could experience pain. They didn’t receive anesthesia. They were simply paralyzed during surgery. What we know now is that infants not only experience pain, but those early pain memories can have a lasting imprint on their nervous system. It primes them for persistent pain as they grow older. What we know now is that about a quarter of children right now experience chronic pain and that up to 50% will experience some persistent pain problem during childhood at some point. This is a pretty prevalent condition in childhood and one that we hope will gain greater recognition as we recognize that all children grow to be adults, and that a number of those children who have chronic pain in childhood will be a part of that 100 million in adulthood.
I think some of the stats and the numbers that you just shared are probably going to be shocking for most people and I think they are eye-opening. They’re of course also meant to be educational and some ways hopefully inspirational as well so we can get children as well as their families the care that they need. There’s one little nugget that you said in there, Laura, that I want to tweeze out a little bit. You mentioned priming of the brain. The people who follow my podcast are super smart and educated. They all know that ultimately the brain is the cause of pain. The word priming is interesting. Can you explain that to us and what that means as far as children and maybe even as far as adults?
Yes. There is a great researcher at UCL in London, Maria Fitzgerald, who’s done some of the pioneering work, looking at the number of even heel sticks that an infant has and how that affects their nervous system and their pain processing later on. There is some really innovative early work that’s being done to understand how early pain experiences and memories for pain. As simple as immunizations that millions of children have each year, making that as positive as an experience as possible can set them up for success and reduce the incidents for them to be vulnerable to persistent pain later on.
Christine Chambers in Canada is doing some phenomenal work with her campaign It Doesn’t Have to Hurt, looking at empowering families, parents in particular, to support kids in the face of acute painful medical procedures and giving them the tools so that they can have that experience be painless.
Oftentimes, when you’re doing clinical research often with humans, especially when it comes to pain, we can’t cause pain in humans. We have to look back into their history and say, “Where did you have pain? How did this maybe start?” Pain can be in essence a memory that can stay with you throughout life. When I think of children, and you’re starting to talk about pain in early childhood, how much do adverse childhood experiences have an impact on either their perception of pain or the priming of that pain later on in life?
There is actually greater attention being paid to this idea of looking at adverse childhood events. We actually just published a paper looking at some of those data regarding the number of childhood events that occur in children with chronic pain. What we see is a much higher incidence of these traumatic or adverse events in children with chronic pain compared to healthy peers. What we don’t know as much is how exactly that rewires the nervous system. That’s what we’re able to do a little bit better now with some new innovative tools like in our imaging that allows us to look under the hood a little bit and see what’s going on in brain circuit patterns that may be altered based on having these adverse events.
Just so people can understand, what would define an adverse childhood event? Does that vary from person to person?
Yeah. There is actually some different ways to look at that. In fact, there are objective childhood adverse events that many people think of like neglect or child abuse. Then there is the more subjective of how a child responds to something like a move, a divorce that for some children may be almost a positive in their life, whereas for other children this can be considered adverse. There is this subjective experience of how we interpret these events as well as accumulative load. That’s often what many of these screening tools assess, is the accumulative load of the number of events that a child has experience with. A critical number is usually being fairly high for these significant events of four or five events being almost a tipping point for it being associated with more adverse outcomes.
Between four to five adverse events in childhood, then you start to see pain numbers increase obviously significantly and statistically that they’re important.
Knowing that pain doesn’t feel good and as a human, we try to avoid it for the most part with all costs. One of the things that often come along with pain can be fear, fear of movement and fear of other things that are both in the physical as well as the psychological realm. Can you talk about the development of fear in children and how that impacts their pain?
This has actually been a passion of mine for the past ten years, is looking at pain-related fear in childhood and adolescence. This really presented itself when I was in the clinic doing evaluations with chronic pain patients and seeing this tendency to avoid more and more activities. Going from, “I avoid running because that’s how I got my injury,” to “I avoid walking up the stairs. I avoid a number of physical activities.” What I saw pretty quickly is that we didn’t have a good way of assessing it in childhood and we also weren’t directly treating it. What we were focusing on was really tools that were appropriate for acute pain like distraction or relaxation, but really not in bolstering children’s ability to engage in the presence of pain or do activities in the presence of pain. That’s where I really tied my background in anxiety treatment with this idea of what had already been established in Europe with graded in vivo exposure with adults and brought that to bear in kids of course to make some modifications. With kids, they have parents, so in order to really help them be successful, we also have to engage them in the process of treatment.
There are so many good things in there that I want to pull out and tweeze out for a moment. The first would be, and this is probably more a higher level clinician question, for the psychologists and the physical therapists and the other practitioners who understand the concept of catastrophizing in pain or negative thoughts. Is that the same in kids as far as the fear is concerned? Is that semantics? Have we really separated those into two accounts or are they overlapping concepts at this point?
There have actually been a few folks that have come out to talk about, “Is catastrophizing a thing in childhood or is it really just a lot of worry? Are they able to have that same downward futuristic perspective that we see in adults?” I think it’s a little bit of both. We certainly assess and measure pain catastrophizing in kids. We certainly see very robust relationships between greater levels of that worry and catastrophizing in poor outcomes in childhood. What’s also interesting is that it’s incredibly valuable to include the parents in that assessment, so we also assess parent catastrophizing. Their worries also have an impact on the child outcomes. That’s a great opportunity to further intervene on multiple levels.
You mentioned anxiety. When we bring in topics like anxiety and depression and other things that start to fall into the realm of psychopathology, I always want to try to make a distinction and say, “Is there a distinction between anxiety and pain? What’s the overlap? Because you have a little bit of anxiety, does that mean that you have psychopathology in essence and does that necessarily mean that pain is going to develop?” That’s a huge topic that I just rolled out in one sentence, but just to talk about that, we can dance around some of those topics for a moment or two.
I’m so glad that you pointed that out because I think it’s a key issue. Essentially, what’s happening is a very natural response to pain. Pain is a threatening stimulus, so when you encounter it, the automatic reaction is to avoid it. This is our body’s way of protecting us. Fear in the context of pain is incredibly adaptive. Where we see it diverge is when we see it quickly generalizing to a lot of situations that never really were related to the pain in the first place. That’s where we can intervene. I don’t think that it is pathological. I think it’s really important to make that distinction, is that this is really just an opportunity to intervene in a naturally occurring process that has unfolded and gotten out of control. It’s certainly something that we can begin to pull back and get folks back on track and do so in a way that helps them feel empowered and progressively helping them to return to activities that are important to them.
I think you’ve just beautifully articulated a really important concept for kids as well as the parents in that when your kid has chronic pain, that it’s not psychopathology. It doesn’t mean that they have some psychological disease or process, but that ultimately pain is just a signal and it’s something that can be controlled through a couple of different techniques. Just that information alone can be very inspiring and powerful for people to hear. Let’s move toward the social part of the biopsychosocial model for pain. I know you have some great research around something called Circles of Engagement and how that starts to bring in the caregivers and families and the parents. Can you talk about some of that work that you have done, which is beautiful research, as well as how it might relate to parents in helping their child overcome this?
I think this is such an important topic because as a parent, your mission is to protect your child. We see families that come into our pain clinic and their child is suffering with chronic pain and persistent pain problem, and they want answers and they want their child to no longer be suffering. To have a conversation about the fact that in this context, we need you to do things a little bit differently than what your instincts are telling you to do is a very difficult one and one where we really have to partner with parents and let them know that they are the experts of their child. We have some tools that can help guide the process of having their child return to an engaging and valuable and meaningful life of less suffering. It does involve taking some risks and being willing to be brave with their child to do things that are a little bit difficult and a little bit challenging in the effort to get back to the life that they once had.
Are you often consulting with both the kid as well as their parents during the actual treatment?
Most definitely. The parents are our partners in this process. When I’m working one-on-one with kids and adolescents, I often have the parent in the room talking with me, really aware from start to finish about what we’re doing, what’s going on, how to translate the exposures or the activities at home. We see them for a very brief amount of time and a lot of the work that needs to be done needs to happen at home. Having them be partners with us in that process is going to only have that competitive edge and advantage on their ability to have gains happen more quickly and more rapidly and feel better.
It’s so interesting what you said that as a parent your first instinct is to protect your child. I’m not a pediatric physical therapist so I never really think about treating kids. That’s a big huge a-ha moment to me. Obviously, when you’re consulting with parents, as PTs and as psychologists, one of the things we try to do is to get people to be a little bit comfortable with confronting their pain on some level, whether it’s increase in their activity, whether it’s becoming mindful of some of the thoughts or emotions they have that may circle their pain or maybe come on before their pain or after their pain. Talking to a parent right now, what could be a simple coping strategy that they might work with a kid who, let’s say, has back pain? Back pain is ubiquitous in adults, obviously in kids as well. What’s a simple coping mechanism or a tip you might be able to give a parent when it comes to their kid with back pain?
There are a couple of things that we always say from the get-go. One is to limit check-ins regarding asking them about their pain level and their pain symptoms. We assume that they’re in pain, that they are doing their best to show up each day. Avoiding those check-ins allows the child to focus on the activities of the day, the things that they’re looking forward to, rather than their pain experience. That’s one that’s a golden rule. Another one is really encouraging that independent coping. That is so essential. Rather than having the parent say, “What can I do for you right now?” is “How can I help you help yourself?” which is a little bit of a mouthful. It really is this matter of having the kids really drive the process of determining their best strategies for navigating and coping and the parent really taking the role of being in the backseat as the cheerleader and encourager of making the space. If the child wants to make a plan with their friend, that is fantastic and fabulous, and we want to encourage that. Their role is to make sure that they are able to drive the car to get them to that event, and taking a different role from driving to being the passenger in the process.
It almost sounds like, as a psychologist when you’re working with parents, that you almost have to give them a couple of motivational interviewing skills and steps that they can actually use with their kids at home.
I think that they certainly need to be engaging their kids in that process of motivation. What’s really great about kids that I feel like maybe a little bit unique is there are a lot of reinforcers in their environment to get them going and to have them work towards. It may be seeing their friends at school, there are birthday parties, there are amusement parks, there are movies, there are a lot of things that really get kids excited to get them back to the activities they love. There are sports, there is horseback riding, there are so many things that we can get them fired up about that I feel like it doesn’t maybe have the same salience as getting back to your job. I think that we do have a little bit of an advantage on the pediatric side in that realm.
I’m going to try the amusement park one with some of my adult clients and see how they feel about that as a long-term goal. They might come around and accept that. I know in your work, you’ve started to use some neuroimaging to really see what’s going on in the brain in kids with pain, in pediatrics. Can you talk about some of your findings? Can we extrapolate some of that to adults or the parents in another way?
Most definitely. It’s been an interesting journey as a pediatric pain researcher because much of what we base our hypothesis and our questions on are what’s been studied in adults, and trying to see do we see the same phenomenon in kids? How is it different? What’s been exciting as being in the forefront of pain imaging in childhood and understanding some of these processes that it seems to be are a little bit more resilient in the context of, for example, intensive pain rehabilitation. We had an exciting study a couple of years back where we had children with complex regional pain syndrome who came to our intensive rehab program. We scanned them at the admission to the program and at the end of the program. We were interested in first of all looking at resting state brain responses, so how the brain activity when you’re lost in thought and the mind wanders at the start of treatment and at the end.
I was particularly interested in the connectivity and the way that amygdala talks to the rest of the brain. Amygdala being the fear center and clearly that is tied to the thing that I’m keen on. We looked at the amygdala and we found that at the start of treatment, children with CRPS showed heightened connectivity. There is more of the cross-talk with the amygdala and other areas of the brain compared to their healthy peers. What was really exciting is that at the end of treatment, we saw that hyper-connectivity begin to dampen down in our patients. Even cooler, those changes were associated with decreases in pain-related fear. As their fears were coming down, that heightened brain activity was also coming down. We were seeing really rapid changes, and this is over the course of three weeks of treatment, in how their brain was responding to this intensive pain rehab treatment that involves psychology, physical therapy and occupational therapy as the three key ingredients.
I think what’s fascinating about that is that you mentioned that the changes happened within three weeks. So often people think, “You have chronic pain. It’s always going to be there. There is no way to measure it. It’s never going to get better.” Some of the research we’re seeing now with brain imaging is fascinating, especially when you combine skills like psychology, physical therapy. You can see changes in the structure as well as the function of the brain. Plasticity is more than just something that happens in a petri dish. We’re way past that point as far as the evidence goes.
There is something that I have a particular draw to lately and it’s on the topic of empathy. I can’t imagine any place more where you might need empathy than working with a pediatric patient who maybe has pain from cancer or a pediatric patient who maybe sustained an injury and they’re dealing with the fear and the avoidance of the recovery process. How do we start to talk about empathy amongst clinicians when we’re working with people with pain, with kids with pain? How do we start to educate their social network around them and how important empathy can be in their care?
Joe, there are so many levels where empathy is really essential in the context of a child with chronic pain. In our chronic pain clinic, we often see kids who come after they’ve been to a number of doctors who said, “We don’t know why you have pain.” They questioned the veracity of their pain. We’re seeing a lack of empathy that starts very early and has a huge impact on their pain journey. By the time they get to us, they’re suspicious, they have their own concerns, and then it takes a little bit more engagement to get them on board with our treatment recommendations because they felt invalidated and they haven’t felt that empathy and understanding. I see it in that realm. I see it in the parent-child relationship.
We actually have a number of studies that we’re just beginning to start looking at parent empathy and how in fact that emotional response to their child’s pain and thinking about the Circles of Engagement, how that can have an impact not only on the child’s pain experience but on the parents’ own emotional experience and their own brain function. That’s another realm that empathy plays just a tremendous role. In all of those areas, we’re thinking about as a provider, how can we be more empathic? As a parent, how can we show empathic care rather than empathic stress? Ultimately, you think that it would be so natural to respond to an individual with pain with empathy. Unfortunately, we’re combating with stigma and a lack of understanding of how pain really works that I think leads to a lot of faulty assumptions.
Those faulty assumptions I think are so important to really address when you’re working with patients and when you’re working with parents. Oftentimes, even the referring physician or any kind of referring provider can send the patient oftentimes with good intentions. But sometimes they send them with some assumptions on what pain is as far as damage, as far as their longevity, things like that. We talked a lot about kids and we talked about families, my last pressing question for the day is, can we say that chronic pain is contagious within families? Do we have any research around that? Is that something that we should start saying, “It runs in families and we should address it,” or should we say that this is not something that’s genetically passed down from generation to generation?
Joe, this is a great question and in fact there was a study that just came out last week that was looking at this family transition. What they concluded, the very large cohort and a number of factors being controlled for, that about 10% of the variance could be accounted for by family transmission and still 90% was individual variation, which I think was really interesting. It also makes us take a step back in understanding how much can we really attribute to family genetic load versus the number of other factors that are actually within our control. I think that is the take-home message that I got was that there is so much within this picture that’s within our control. I think that leads us in a really exciting direction.
I love that because so often people come in and I treat primarily adults, “My dad had back pain and that’s why I have back pain,” or “My dad was diabetic that’s why I have Type 2 Diabetes.” One of the things I always really spend a lot of time, and this happens over the course of weeks as far as education goes and seeding these principles, this epigenetic features that are around us at all times in our life: your thoughts, your emotions, your nutrition, how much you’re moving or not moving, what your social environment is like, all those things are really important when it comes to pain. It sounds like from that research article, that it’s been proven in pediatrics, which is ground-breaking because then we can start to lay that to rest and say, “Let’s start to go down this therapeutic ladder of ways we can help you alleviate your pain basically.”
I’ve been talking to Dr. Laura Simons who is a licensed pediatric psychologist who works at Stanford University Medical Center. This is a fascinating interview. I loved talking about this topic because pediatrics is not something I’ve had frequently on The Healing Pain Podcast. It’s been a pleasure having you here. Laura, can you tell everyone how they can find out more information about you?
I want to thank Dr. Laura Simons. You can find her on Twitter @LauraSimons or at BPPLab.stanford.edu. If you like this information and you think it’s important, which I know you think it is, make sure to share it with your friends and family on whatever social media handle you have, whether it’s Facebook or Twitter or LinkedIn. Hop on to iTunes and give us a five-star review. I’m Dr. Joe and we’ll see you next week.
About Dr. Laura Simons
Dr. Simons is an Associate Professor in the Department of Anesthesiology, Perioperative, and Pain Medicine at Stanford University School of Medicine. In addition to an active program of research directing the Stanford Biobehavioral Pediatric Pain (BPP) Lab, Dr. Simons works in the clinic evaluating and treating children and adolescents who present with chronic pain. In addition to assessment scale development to guide treatment targets, she has developed an exposure-based intervention for youth with chronic pain. She has also integrated neuroimaging into her program of research to gain a mechanistic understanding of altered psychological processes in children with chronic pain.
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