Rob Steele, MD (Host): Welcome to Pediatrics in Practice, a CME podcast. I'm your host, Dr. Rob Steele, Executive Vice President and Chief Strategy and Innovation Officer at Children's Mercy Kansas City. Before we introduce our guest, I wanted to remind you to claim your CME credits after listening to today's episode. You can do so by visiting cmkc.link/CMEpodcast, and then click the button that says claim CME. Today, we are joined by Dr. Cara Hoffart to talk about amplified pain and how to treat it.

Dr. Hoffart is a Pediatric Rheumatologist, Medical Director of the Rehabilitation for Amplified Pain Syndromes, or the RAPS program, and Medical Director of the Pain Management Clinic. She is also the Associate Professor of Pediatrics at the University of Missouri Kansas City School of Medicine. She completed her pediatric residency at Children's Mercy, followed by her Pediatric Rheumatology Fellowship training at the Children's Hospital of Philadelphia, where she developed an interest in treating adolescents with chronic pain syndromes.

Dr. Hoffart developed the Rehabilitation for Amplified Pain Syndromes program, which is an outpatient, intensive, interdisciplinary pain rehabilitation program, one of only a handful in the country, which, we'll get into this, but I think it's a handful in the world, which helps children with chronic pain reclaim their lives through an innovative functional approach. The program and patient stories have been featured in 60 Minutes Australia and NPR's Invisibilia podcast. She has presented the results of her research and outcomes of this program on both a national and international stage and gained national recognition for her expertise in Amplified Pain Syndromes.

Dr. Hoffart, thank you so much for joining us today.

Cara Hoffart, DO: Thank you for having me, Dr. Steele. I'm thrilled to be here. I always love to discuss this topic.

Host: Great. Well, tell you before we jump into it, I have to ask you, you're a woman after my own heart because you seem to enjoy all the fun things in Kansas City that Kansas City has to offer, art festivals, the jazz festivals, the farmer's market. Am I accurate? And what I should ask really is now, do you drag your kids along with you and do they enjoy those things?

Cara Hoffart, DO: That's debatable. I have a six year old son and a three year old daughter. She lately is my farmer's market buddy. And last week I begged my six year old son to come with me and I regretted it the entire time. So sometimes it's good to leave well enough alone, and do things that you enjoy, and not have to drag everyone with you.

Host: I feel your pain. As a father of five, I totally get that and I'll resist the urge to make some bad joke about it being amplified pain by bringing the kids along. So we'll pass that off. Let's go ahead and jump right into it and let's talk about amplified pain and really what is it? Can you define that for us? And how does it differ from normal pain?

Cara Hoffart, DO: Amplified Pain Syndrome, it is a complicated topic, partly because it is challenging in the medical community to even agree on nomenclature. So, you will hear pediatric rheumatologists such as myself and some pediatric pain centers use this term amplified pain syndrome which I basically classify as a large umbrella term that means your nerves love to send pain signals. So essentially there's a short circuit within the processing and the way that the brain is perceiving pain. And it turns things that should hurt a little bit into pain that hurts a lot, or it can even turn sensations like touch that should not hurt into pain.

But the condition is also known as central sensitization syndrome, nosoplastic pain within that umbrella would fit terms like juvenile fibromyalgia as well as complex regional pain syndrome. So my approach with this condition, I'm a little bit more of a lumper than a splitter because most of these conditions tend to respond to the same type of approach.

And so I also see patients who have associated fatigue and chronic abdominal pain, chronic headaches. So there are a lot of different things that go along with it, but all of those types of symptoms are treatable through our approach.

Host: We mentioned at the top of the podcast that you run one of very few of these types of programs in the country. Can you give a flavor of just how uncommon that is? And I know that you have patients from all over the country and, I've actually personally seen, patients coming in from Australia. I remember it was during COVID, but can you give us an idea of just where you're pulling your patients from?

Cara Hoffart, DO: These programs are few and far between, so unfortunately families often have to travel quite some ways, to find a multidisciplinary team that does an intensive, pain rehabilitation program. So one of the closest programs in the Midwest would be going up to Mayo Clinic. And there are programs in Philadelphia and Boston and a couple out West.

But there truly are just a handful in the country. We're the only program of this type within the region. So we get a large referral base from our bordering states, but also from Texas and Utah. But we get patients as far out as Washington and Michigan and North Carolina, Alabama. And as you said, we've had a patient from Australia, as well as a couple from South America, and even from Europe have traveled all the way to do this program.

Host: So I think that it seems that this really outlines just truly how complex it is to evaluate these patients, because from what you're describing, there's clearly a significant interplay between the physiologic response and I would say, just the perception, if you will, of pain, can you give a sense of what are their specific underlying conditions that, make this either more complicated or, more prevalent?

Cara Hoffart, DO: You're correct in that it's very complex. It is a complex biopsychosocial model that describes this condition. So when I meet my families in clinic, I spend quite some time talking through the physiology of their pain, describing how you're supposed to have pain in response to triggers like nosoceptive triggers, so if something is sharp or you sit on a thumbtack, or you put your hand on a hot stove, that's supposed to hurt.

Pain is supposed to be helpful, it's supposed to say danger, danger, alert, don't do that anymore. And it is not only an issue when this population of their nerve system becoming aberrant and sending too many pain signals and the brain starting to interpret normal sensation as painful, but we certainly have started to find there are genetic factors at play with this, and there are pain conditions that can run in families.

We know there are hormonal implications to chronic pain conditions. We often see these conditions ramp up more in our kids when they are hitting puberty or in puberty. We also even know the immune system is involved in chronic pain. When you look at populations of people with chronic pain, parts of their immune system differ from those who don't have pain.

So it's just this incredibly fascinating and complicated biological model. But then you also have to consider the fact that even though there's this clear physiology behind it with an aberration of your autonomic nervous system and an increase in your sympathetic response or that fight or flight response, you also have to acknowledge the fact that being in pain all of the time is a very emotional experience.

And no matter how tough you may be or how well you handle stress, being in pain all day, every day for months or years; is incredibly stressful. And we know that pain increases stress and stress increases pain. And so not only do you have to have a mechanism, to work to basically retrain the nervous system. You also have to have a comprehensive stress management plan that treats the whole person and frankly, the whole family. And that's where it gets really complicated. And you have to have a multidisciplinary team to do that.

Host: Yeah. And I imagine a lot of those families come into your practice with a lot of input from others, whether that's from the medical community or others, with biases one way or the other of what may or may not be going on. I imagine that's part of the treatment plan too, is just really defining exactly what's going on.

Cara Hoffart, DO: You're exactly right. Most of the families we see have been in the medical system for a long time. There is a misperception that children can't have chronic pain conditions, and that this is more of an adult condition, but up to 25 to 30 percent of kids have some type of chronic pain at some point during childhood. So I think it's severely underestimated, but a lot of our families have seen doctors all over their community, the region, and even the country trying to get an answer for what their child even is diagnosed with, as well as how to treat it.

Usually by the time they see us in our clinic, we are often a last resort stop for them. And they had to go through a lot of different places to get referred to our program. And they often come in understandably guarded, but hopeful. And we really try to validate their experience to make sure they feel heard.

And I explicitly tell all of my patients, their pain is not in their head because pretty much every patient I have ever met, somewhere along the line, someone, whether it's in their family, their school system, or their medical providers, have told them or implied that their pain isn't real, they're exaggerating, or it's not in their head, and that is just the most damaging messaging that you could give to any of our patients.

Host: Fantastic advice, particularly for the medical community. And along those lines, Dr. Hoffart, tell us, a lot of our listeners are primary care pediatricians; at what point should that primary care physician really start to consider whether this is more than what you would otherwise expect on any other pain response, right? At what point should a referral, really be considered?

Cara Hoffart, DO: Sure, I think first it's important to know that a lot of these conditions can be treated out of the primary care office. And I have counseled a lot of pediatricians through the years, who are first line, so they can recognize these conditions a lotfaster. They have rapport and relationships already built with their families.

And they can really help the families get through this without ever needing a referral even to our clinic. That being said, we certainly see quite a few that aren't getting better outpatient and do need that referral. But I think it's time to consider a referral to a multidisciplinary clinic like ours, if pain is out of proportion to what you would expect it to be to even small injuries or they just have pain for you've done, baseline workup with some labs or maybe some imaging and nothing is coming of it; then the pain is typically out of proportion to what you would expect for what you are or are not finding.

In general, most of our patients are relatively, healthy, but certainly you can develop a pain condition on top of other conditions, because the nerves are just more primed to do that. Some of our patients even experience with their pain, intermittent swelling, color change, temperature change, and they can even develop pain to touch or allodynia.

Not everyone has that, but that is also a very telltale sign. But this is in some ways has clear elements of to diagnose it, but it's also in some ways a diagnosis of exclusion and you don't want to miss some other inflammatory condition or something else going on. And so then there's this fine balance of how much more do I investigate and medicalize versus now we know what this is and we need to move forward with that treatment plan.

Because also if you are over investigating, even though you're pretty certain there's not an underlying etiology, that can be harmful in its own right as well.

Host: That's a great overview and some pearls of wisdom, on the examination. I think is, outstanding. Can you give us a sense in the pediatric population, what is the age range that you're generally seeing these patients come in and, and what, if any difference do you see in the presentation of those patients from a, say, younger pediatric patient versus an adolescent?

Cara Hoffart, DO: The average age for this population in this condition is approximately age 12 to 17 or 18. The median that we see most often is age 14, 15, 16 is probably the most common. I will say we're seeing this younger and younger. I'm getting more and more referrals for 10, 11, 12, and I've seen this in children as young as five as well.

And I don't know that the presentation is significantly different between our younger children and the teenagers, but the autonomy and independence we expect our teenagers to take with their treatment plan is certainly different than what we expect of the younger children. So all of our kids require parenting support, in how to parent a child with chronic pain and to help them through that.

 But there is a little bit more support that the parents of younger children need to help their child through that. I can also say, I think the younger kids, sometimes they might get recognized a little bit earlier. There are just different factors at play. Maybe fewer social issues, with social media and things like that that kind of play into things.

And, our younger kids sometimes, I think, can get better a little bit faster and easier.

Rob Steele, MD (Host): When these patients come in, they're getting intensive therapy from you and your team. I've heard the anecdotes, with patients and it's life changing. They've really had years long, as you mentioned, journey and odyssey through the medical system and, others, trying to get to a solution and they are, almost transformed with regard to the therapy, but I presume they're not certainly cured, when they leave.

So can you give a sense of how long does it take before you really start to see something that would, I don't know what the right word would be, but you know, more of a remission. And also, I guess I would ask, how often is there relapse?

Cara Hoffart, DO: Sure. These are the questions all of our parents ask too. And, my crystal ball is challenging on this, especially at a new patient visit. So, every patient we see comes through our pain management clinic and has an initial multidisciplinary visit, with a medical provider, psychology, social work, nursing and massage.

And so that is a new patient visit where we outline what this condition is, how we treat it outpatient. And only a third of the patients that come through our pain clinic end up needing the RAPS program or the intensive program. So just by sending someone to our clinic does not mean that they will do RAPS or that they have to do RAPS.

There is still a lot to gain outpatient. RAPS is not for everybody, and like I said, not everyone needs it. Of the patients we see outpatient, as I said, many of them get better on their own without the program. I would expect that within two to three months, by the time we see them back, they should see some improved function, maybe some improved symptoms, if they're doing all the things that we ask them to do, to get better from this.

And then within the RAPS program itself, most kids are in that program anywhere from four to six weeks. It's Monday through Friday, all day, every day. It is logistically challenging, to say the least, for families to do that, and I think speaks to their desperation to get their child better and that they've tried everything else.

And that is a transformative program. We're just incredibly privileged to get to spend that much time with those families and guide them through it. By the end of that program, 90 percent of our patients are fully functional, meaning their pain keeps them from nothing.

And then 70 to 80 percent of our patients, by doing that program, the following three to six months afterwards are generally pain free. So 70 to 80 percent become pain free three to six months after the program. And then we have follow up data for a year or more out, and we are finding that these outcomes sustained. We see improvement in anxiety and depression, as well as significant improvement in attendance at school. And so we do see that this is sustainable. When we've done some smaller surveys of kids that were at least five years out, we found that pain tended to be quite low or in remission.

But we found that maybe anxiety and depression had actually eked back up again. And so there is still that mental health component that's really important to make sure there's support for, moving further out from the program. And we know further patients get out from programs like this, the less likely they are to have relapses.

But we also know that by doing a program like this and getting better as a teenager, if you had pain flare back up and you're 25 or 30 or older, you have direct evidence this type of program can work for you. You developed a toolbox and the skillset you need to get better on your own, and rarely do they need to seek additional assistance from the medical field to get better rather than they can implement their skillset.

Host: Thank you so much for joining us, Dr. Hoffart. I'll tell you that this has been very informative and it sounds like the outcomes data that you're continuing to follow has been very positive. So we really appreciate you joining us today. I have to ask, with or without kids, you seem to have tapped into all of the fun activities. Rumor was that you have a little bit of fear of missing out because of all the things that are happening in Kansas City. I got to ask, what is that one thing that we really should, for those of us in the Kansas City metro area, should not miss out on?

Cara Hoffart, DO: Oh man, there's so many great things to do here. So I always knew when I moved out to Philadelphia that I would land back in Kansas City. I'm not originally from here, but I just, love it here. So I'm a huge sports fan and the Royals are hopping again, so I'd suggest going out to a Royals game this summer.

Host: They are definitely hopping this year. We'll try not to jinx it, but boy, they're doing very well. Well, Dr. Hoffart, thank you again for joining us. As a reminder, claim your CME credit for listening to our show today. Visit cmkc.link/CMEpodcast and click the button, claim CME.

This has been another episode of Pediatrics in Practice, a CME podcast. See you next time.