So I want to focus on treatment effects and the approach that we typically take in the pediatric world. So I really do appreciate the setup and I think there was some central planning here in terms of order of talks.
But it’s been set up very nicely in terms of some of the concepts that many of my psychology colleagues have really set us up for, now honing in on what do we do when we have patients in clinic? So I want to start with an illustrative case.
And the other element here is this patient has some arthritis features. So it’s actually a really nice setup as well. And then I want to talk a little bit about our treatment model at the very end. I don’t have any disclosures to share with you.
So this is a 17-year-old. This is a pretty quintessential case that we might see. So, for some of you not familiar with some of the acronyms there — juvenile idiopathic arthritis, migraines, amps — amplified musculoskeletal pain syndrome which has been slightly controversial.
I’m kind of chuckling, looking at Chad. Recently there was an NPR story about is this a real diagnosis or should we just stick with fibromyalgia. I’ll talk to you later about that. PTSD is post traumatic stress disorder. TMJ — temporomandibular joint disorder symptoms. A lot of abdominal pain.
Had been working with a rheumatologist as well as neurology to stabilize headache medication. You can see the medications there. Previous surgical history of tonsillectomy. Very interestingly, had injury to hand, so had some very specific injuries that had occurred.
But you can see they’re fearful of movement. And this is one of the things that we’re really trying to prevent is to help provide education to our patients that movement should not be dangerous for many cases of certainly centralized pain but even for peripheral pain disorders. We administer the body map and I’ll show you that one in just a moment, but you can see lots of different places of pain.
Had seen a physical therapist as well as a therapist for physical abuse. So this is that early aces kind of constellation of adverse childhood events. Also, very strong family preponderance of depression. So this is the body map and you can imagine that there are lots of sites that one could focus on.
And many of the times that we’re seeing patients, they’ve bounced around from one medical provider to the other. And many times, like the picture of the elephant, someone thinks, I’ve got the unifying diagnosis here. Many times our families — and I say that very specifically. The patient comes in, but they come in with families because we’re working with youth.
And often they’re looking for someone that can help kind of unify the story and help them understand conceptually why do I have so many places that I hurt? And really beginning to understand, hey, there may be a centralized feature and component to this, even though they’re at a very young age.
And I think by providing that level of education, we’re setting them up for a very different conceptualization of what treatment looks like, so that while 40% of our folks don’t come to us on opioids, thank goodness, we’re really trying to prevent that wave of them graduating into a health care system that may place them in disadvantageous treatments.
So we’re really beginning to look at and trying to understand — — how can we unify that education to the patient? So she was a senior in high school. This is quite typical — missed about 20 days of school. The record, I think, is 169 days that I’ve seen. And the record of sedentary activity is 20 out of 24 hours a day spending in bed. This was not this patient. But like many of our other folks, they’ve had 504 or IEP plans initiated to try to help with accommodations in school.
A former soccer player and had been involved in other sports. Really wanted to return to those activities. And so we often ask about what goals do you have? Why are you coming to the pain clinic? And many times they say, we want to return to activity. And so we want to partner with them to help them resume some of that activity.
This is a pretty busy slide. But as other presenters have shared before, there’s almost no aspect of someone’s life that isn’t impacted by their ongoing chronic pain. So you can see in the case of youth, their parents are impacted. Every other aspect of their life is impacted by their pain.
To further elaborate here, we can see that there are lots of different areas — decreased physical activity, anxiety, depression, decreased school attendance, etc. So, Yvonne shared earlier about sitting for 45 minutes. What we notice anecdotally is that static activity is particularly hard for people with chronic widespread pain. So standing — and we typically go through in our assessment. I’ll share in a minute.
We have a physical therapist, myself, and a PMNR physician — all co-lead the interview that we do with patients. And so we’re often asking about how long can you sit? How long can you stand? How long can you walk? How long can you run? And asking about all of those to kind of get a picture of what do they look like? What kind of static activity can they tolerate? What we typically see is kind of that spiral downward.
Often they get out of extracurricular activities first, all the way down to activities of daily living or ADLs. That spiraling down — we try to catch them as early as possible, before they’re spending those 20 hours a day in bed, before they’re really, really sedentary. We’re trying to catch them early.
Other things that we tend to notice are — wait, sorry — poor balance. So a lot of times these kids will report that I have a hard time walking on the ice. I can’t — so one of the kids that we were seeing in our intensive program was involved in archery but could no longer make it to the course because the ground was very, very uneven and she had a really hard time managing her balance.
So we often ask about that just because we think it’s indicative of involvement in activity. We often tend to also ask about the five senses, to get at the centralization of pain. We tend to notice the sensitivity to light and sound even without the presence of migraines, sensitivity to smell, taste, and touch.
Many of our kids have modified what they wear — so tight jeans, tags, other kind of things are totally eliminated out of what they wear. So there’s that sensitivity. By asking about those things, we’re also later then educating them about this is likely centralized pain and your nervous system has been modified.
It helps them understand why are we taking the approach that we’re taking and what can we do to rehabilitate them? Pain locations — if you look at the epidemiology of pain, abdominal pain and headache are the most widely reported pain locations for kids and young folks.
One of the questions that we’re increasingly asking is, what are those prodromal symptoms? Of the people that report abdominal pain, who goes on to have a lifetime of pain or even widespread pain? So we’re talking, getting kids in our clinic at five and six and seven years of age that go on to have longterm chronic pain. Epidemiology — anywhere between 15 and 20%, some estimates a little bit lower, five to 8% in rheumatology centers. So it’s fairly common, unfortunately. Most diagnosed during childhood and adolescence. Four to one ratio, female to male ratio.
Prior to puberty, it’s closer to 50-50. We tend to see more adolescents in our clinic. And then it’s more like four to one. So the question then becomes, how should we conceptualize and treat these patients? And really the you know, kind of the theme we’ve been hearing here is what role does centralized pain play and how should we conceptualize who has centralized pain and who has more of a peripheral pain problem?
And is there a unifying conceptualization? We’ve taken the approach, probably because we’re here at Michigan, thinking about centralized pain and what role does that play in their course? We’re increasingly beginning to understand, are some people prone to chronic pain? And I think the answer is yes, but although, who are those folks are really the open question.
We know some of the risk factors for that but we’re not entirely clear who those folks are. Some of our colleagues here have talked about that preponderance of risk. Who’s at the peak or apex of that triangle? You can kind of see the level of complexity that we’re trying to disentangle in our treatment and conceptualization. Our little homegrown model here is people on the far right hand corner, bottom lower right, tend to have high levels of complexity both of medical and psycho-social issues.
Those are the folks that we tend to see in our most intensive outpatient program that I’ll describe in a moment. So how do we help? In our particular model, we’re using cognitive behavioral therapy, recreational therapy, and exercise. And I’ll talk about each of those in a moment. So we’ve talked about the evidence base for cognitive behavioral therapy.
There are smaller evidence bases, meaning fewer studies, in the pediatric world than in the adult world. We know from Cochrane reviews that there are robust effect sizes for cognitive behavioral therapy related to pain. And then there’s also other meta-analyses showing moderate to large effect sizes for using CBT. We also use exercise for pain modulation and functional restoration.
Our mantra often is learning through experience. And so one of the ways that we try to help people experientially learn is by getting on a treadmill, engaging in that physical activity, then pairing that with psychotherapy to talk about in process what was it like to get on that treadmill? What did you experience in your body?
What interpretation did you give that? What attribution did you give that? And how do we modify those catastrophizing thoughts that may prevent them from getting on the treadmill the next day? Sleep and exercise — we tend to try to get kids on really good sleep hygiene regimens.
So turning off the electronics, establishing a regular bedtime and routine to try to help regulate that sleep-wake cycle. So now I want to move into our particular program. When I came here, it seemed like everything had to have an MI in it [laughing]. So this is our attempt at making a little bit of a clever analogy here. So we tend to use an interdisciplinary pain management approach which has been shown to be evidence based. We look at each of the disciplines.
And I’ll talk to you about, a little bit about, the integration of those. But our program philosophy is to get people moving. One of the sub-contexts is to get back to life. So what we really want to do is increase their activity goals and activity so that they can build a sense of confidence and confidence through successes.
And so understanding what level are they on now, help them be successful so that they’re more likely to take that next step. So we incorporate a lot of motivational interviewing to try to nudge them off the finance and heighten their level of dissonance with their current level of activity to nudge them and bump them back up.
And then we want to see improved physical activity that leads, again, to more and more activity and really locus of control and self-efficacy. Typically, we’re seeing folks after they’ve gone through their extensive diagnostic workup. We’re not a full diagnostic clinic. We’re not going to go down every single pathway.
We really want them to buy into this idea of rehabilitation as the approach to take. And so we’re fairly light on imaging, labs, all of those sort of things. We really want that done prior to. We tend to get most of our referrals from rheumatology orthopedics along with neurology and GI. So they’ve done usually an extensive workup prior to them coming to us.
Really, what our evaluation is to assess for is readiness for engaging in a rehabilitation approach and how ready are they for that change, and then introducing and educating the patients about a biopsychosocial model of both their pain but then also their rehabilitation.
Ideal candidates, anywhere between eight and 28 years old. The AYA, the adolescents and young adults, are more of a challenging group for us to work with but we’ll do it on occasion. But we tend to nudge those folks on to the adult world. We also look for functional limitations. If they’re absolutely non-ambulatory — we’ve had a number of patients come to us in wheelchairs. They’re not moving.
Then we really think about an inpatient rehabilitation model — for example, Cleveland Clinic, CHA-Boston Children’s Hospital has excellent programs for people that are highly, highly disabled. We need to have them up and moving around for the treatments. Severe psychopathology is something that we’re absolutely not equipped to deal with or handle. Despite my training as a psychologist, I’m not taking on full-blown fulminant psychosis [laughing].
It is just not in our wheelhouse, so these are the kind of — think about this as a continuum. So on the far left hand side you see independent treatment, so individual physical therapy. Some of the kids that come to us, we recommend just local PT or local psychotherapy. Many of them have already initiated that. One of the criteria that we use is failed physical therapy. Often it’s peripherally oriented physical therapy. So you take someone with centralized pain that has pain location in their knee.
They do a course of physical therapy. No surprise it’s not particularly helpful. It’s not a particularly mechanical problem that they’re having. We, on the other hand, take it in our physical therapy approach. You’ve got to do aerobic exercise. You’ve got to get your heart rate up. You’ve got to sweat a bit.
You’ve got to get that body moving in order to reset some of those pain signals. So moving to the far right, we tend to do more intensive stopping at that third box — so interdisciplinary day treatment. We don’t do the inpatient model. So our day treatment program is Tuesday, Wednesday, Thursday, three consistent works, expecting kids to return to school on Monday and Friday.
They come to us from 9:00 A.M. in the morning until 3:00 P.M. in the afternoon. And they’re busy. Every hour they’re starting something new. So they’re doing individual and group psychotherapy, cognitive behavioral therapy primarily.
They’re doing physical therapy, occupational therapy, art and recreation therapy. We want them to incorporate a lifestyle that is active, that includes physical activity. And we want them to build that into their lifestyle early. We’re reinforcing that message with parents. That way, when we talk to them about episodes of care to educate them, we’re saying start this early at age 15 because you’re likely to need this again at age 25, again at age 30, 45, 70, all the way to 90.
So we want to incorporate that lifestyle change. Ingredients of treatment — again, the biopsychosocial model, behavioral interventions, CBT, all of the things that we’ve mentioned. One of our primary goals is to get them in school. This is their primary developmental task to master. They need to learn.
They need to be educated, but they also need to be socialized and engaged in a lot of good activity. We tend to write a lot of letters for accommodations and modifications using a 504 plan or an IEP. It helps with their level of anxiety about returning to school. And so we want to try to incorporate some of those elements there.
We want to get them to sleep. This hygiene is incredibly important. Most adolescents have a terrible sleep hygiene regimen. It all has to do with about a four-by-six-inch electronic device [chuckles] — Instagram and everything else, Snap chatting well into the wee hours of the night. So we really want to incorporate good sleep hygiene.
Cognitive strategies — many kids will tell us it’s a waste of time for me to go to school because I’m not going to learn anything anyway. We’ve got to help them calibrate and say, even if you’re not academically successful in school, it’s really important for you to be there for the social contact as well as mastering something that’s very challenging and hard for you to do which is sitting for 45 minutes or walking the halls, being there.
Those success experiences are incredibly important for their motivation for getting better. We spend a great deal of our time talking to parents about how to parent, not being overly solicitous but setting some boundaries and limits, helping them understand how can you reinforce the right behaviors, efforts toward coping, efforts toward doing something that’s a challenge and difficult.
Often we’re coaching parents to manage and deal with their own chronic pain. Many of the parents that we see have their own centralized pain. And so they’ve developed very, very poor habits in terms of activity that are reinforced and modeled for our younger patients. And so we’re trying to treat the family many times. Our particular workbook is a manualized treatment.
It’s the CHIRP. It was originally designed to treat a wide variety of symptoms, not just pain. We’ve adapted it for that. One of my coauthors laughs about how for folks with less severe symptoms we should have the CHEEP and for those with incredibly bad symptoms it’s the Screaming Eagle Therapy.
So we’ve incorporated lots of different components to this — education, gate control theory, pacing, cognitive restructuring, sleep hygiene, problem solving, assertiveness. One of the big ones that we spend a great deal of time talking about is how to talk to your friends, teachers, and parents about your pain. You’ve got to come up with a pretty short script, usually three sentences.
What do you got? What are you doing about it? And what should you expect from me as a friend and peer for should you see me back in school, should you see me back on my team? Not to kind of stretch that out because a lot of these kids have a lot of anxiety about talking about their illness and what they’re doing about it.
So we coach them. We do a lot of role playing and other things to get them back active again related to that. Really, these are the pillars of good, healthy living. We’re trying to instill some of those. Then a couple of practical pearls that we’ve noticed — so kids with AMPs often seem mature for their age.
Many of the kids that we see — and this is probably some kind of Berkson’s bias here, but you know, the people that we see, they tend to be very focused on what do other people think of me, what impression am I leaving on people? Lots of perfectionism in terms of academic importance or importance placed on academic performance.
And they often are very attend to whether they’ve disappointed people or not. So they have this additional challenge of, I’ve got this pain, how can I overcome it? How can I function and perform really well? And so they’ve got a lot of fears about if I return to school, will I be back where I was before? And so we try to help them modify those.
We tend to pay a lot of attention to the language that we use and how we talk to people about their pain. There’s a great pediatric pain letter that’s been written by Rachel Cokely and Neil Schecter looking at metaphors used to describe pain. It’s referenced here in the references — lots of great metaphors.
We tend to use a lot of those helping kids understand what’s the nature of their pain. This is a little bit more about just treatment effects. I won’t belabor that. It’s all in your handouts. Again, some of the things that distinguish our physical therapy from more focal types of physical therapy — so traditional PT, again, usually focused on trying to identify that localized mechanical problem.
On the far right, we tend to look at how do we get you back active, enjoying activities, activity pacing, ADL — so return to school, extracurricular activities that may also have a higher reinforcement value than getting on a treadmill for 20 minutes or doing some other kind of activity that may or may not be all that interesting.
I talk about my physical therapist that I work with as being stealth psychotherapists. These guys are amazing in terms of their ability to motivate people to do hard things. They also have disposable time to reinforce many of the messages that we’re talking about in psychotherapy. So as people are on a treadmill or doing activities, they end up getting to know their physical therapist.
And so one of the qualities, I think, of our program is we huddle daily multiple times a day, talking amongst our treatment providers kind of reiterating what did we learn? What things have we additionally learned from our patients that we can reinforce and kind of put back into our treatment? So we’re often spending lots of time learning from patients. The other part that’s, I think, unique is therapeutic recreation as well as art therapy.
So therapeutic rec is the use of physical activity and hobbies and activities. So we in our program, on Wednesdays are outing days. So they go to the cat cafe here in town. They go to the [inaudible]. They go rowing. They go to bowling alleys. We really want to infuse a sense of these are developmentally appropriate activities for kids to do.
It can also involve activity like Dave was mentioning earlier. Many times our patients are more active than they think they are and can do more than they think they can. And so by including the therapeutic rec we can help them see that. This is just a little bit more about what we’re trying to get them back to. And then we also include art therapy. So this is a way for them to sometimes express their emotions through nonverbal methods.
And so lots of our kids will really resonate by participating in those particular activities. Like I mentioned before, we do individual and group therapies. Many of these kids are socially isolated. They find a lot of social support in working with a cohort of up to four patients in a group. The parents also, in the lobby of our treatment facility, have started Facebook pages together. They tend to connect on social media. They often have not met other parents that are dealing with the same kind of issues. And so they’ve connected as well.
Lastly, we do have a website. It’s referenced here. And for those of you in the Michigan system, you can easily set the My Pain order set — simultaneously order psychology, PT, OT, and therapeutic rec. So we’ve tried to make it easy for people to refer to us.