Hi, everybody, and everybody else online watching this live. I am Dr. Victor Mensah. I am a PGY2 at Mount Sinai Morningside and West, psychiatry resident. And unfortunately, my fellow team members are unable to make it today because of unforeseen emergencies. But you are in good hands. And this is going to be a good presentation of something we're very, very passionate about. And to start, I want to still tell you a little bit about my team. And it breaks my heart that they can't be here to deliver their portions because these are really, really passionate people. So Dr. Zemsky is a pediatric psychiatrist with 20 years of research study in pain in children. And he is currently attending at UU Penn. He's been working in the industry for about 20 years. Grace is a friend from medical school. She's a MD, PhD, doing her PhD right now on pain studies in nonverbal children. She actually has a beautiful seven-year-old boy with autism and something of an inspiration for her and how she ended up in the field. Christine Kim is a psychiatry resident at Robert Wood, first-year resident. And I am the fourth member of the team. And I am currently, when the case we discussed here, I was working in the emergency room at the time. So we'll get to that. And we'll talk a little bit about that. So any disclosures? I don't have any financial disclosures. And I don't think any of my team members do either. So without any more delays, let's get to the nitty-gritty of things. So in the next hour, I'm going to try to convince you that childhood chronic pain is one of the biggest predisposing factors to poor outcomes in adults. And oftentimes, it's not diagnosed or addressed early enough. And the burden on our psychiatric or medical system becomes that much worse because of it. So as we look at just chronic pain in children, we see connections to later on down the line, people who grew up with chronic pain are likely to end up in a low socioeconomic environment. Parents of people with chronic pain are likely to have a lot of emotional stress from that. And as well as there are active stressors and cortisol levels actually affect the brain, causing shrinking, which you move forward 10, 15 years. In the future, these patients are likely to develop anxiety disorders, depression. And then from there, at least the substance use, poor medical management. And these are all problems that had we been able, or if we do better in being able to diagnose chronic pain in children, we'll probably be setting them up for more success in the future. So the main core of this talk is going to be about this case that happened between 2021 and 2022. So we'll start off. It's a Thursday night in the emergency room. A nine-year-old consult comes in that a nine-year-old boy was brought in by mom. And all that the consult said was that he won't stop hitting himself. Oh, he won't stop self-harming. He is a kid with autism spectrum disorder. He's a nine-years-old boy. It's nonverbal. He communicates with the tablet that he uses. And during the interview, mom shares he's been having worsening irritability, poor sleep, and he won't stop hitting himself in the face. That was the main thing that mom was concerned about. And also, at home, he'd been screaming in the middle of the night, hitting himself at night, staying awake. And the night mom brought him to the emergency room, she was concerned he had not had a full night's sleep in three days. Mom was overwhelmed, didn't know what to do. So she brought him to the emergency room. And I want to pause here because this is something that you see a lot with patients, parents who just don't know what to do. And if you open up the EMR at the end of September, you'll see how the presentations happen. The child was having an issue at home, brought in two weeks on the inpatient unit, discharged home, maybe some medication changes, discharged home, back two months later, and then stays for two weeks, discharged home, back two months. And so that happened over and over and over again. And this is a picture that happens a lot because parents sometimes don't, when they're overwhelmed, the answer is just to go to the emergency room and try to figure out what's wrong. And what we do is admit the patient, change the medications. And I feel like I can comfortably make that comment because I was the resident who admitted the patient. This is not me pointing a finger at somebody else. This was four or five times that what would eventually become chronic pain had been missed, and I missed it also. So when I'm saying that, it's not to throw shade at anybody because I could have caught this initially, and I didn't. And I think it's just because we, yeah. So what are your thoughts of what could be going on here? I think I might have buried the lead there a little bit, but I'll give you a little bit more pertinent background. So the start of this whole ordeal was in October of 2021. The kids started having what is just called irritability everywhere in the note, irritable, irritable, irritable. He started pinching teachers if they told him something he didn't want to do. There were a lot of non-specific behaviors, and oftentimes with something like this, if there is a mental health diagnosis on file, that's it. That's what's causing all of the issue, and we often don't expand the differential enough to see what else might be happening. So a month later, 2021, he was started on aripiprazole. Mom reported that his aggressiveness was sort of reduced a little bit, so he had a good period. Then back in May of the following year, the family moved to a new neighborhood. And we know what we know about change of environment, and there were a lot of different changes as well in the boys' environment. When they moved, he became more irritable, more withdrawn, loss of interest. He loved playing on his iPad, loved going to swimming, didn't really have an interest in doing that anymore. And this was when he actually started slapping himself in the face and in the head. At the time, he had a cold. This was during COVID, but it was COVID negative. In June, he was out of school. A teacher that he had had for three years, I don't know how much experience you have with patients with autism, they become very attached to the people they work daily with. And this boy's teacher left school, and that was also another thing that we were trying to consider what was leading to this change in behavior. But we couldn't find an answer, so what we did was increase the medication, which is something we do often, hoping for the best with good intentions. But he continued to hit his head, slap his face, and so much so that he was essentially kicked out of the summer program because the face slapping was distracting the other kids, and more and more reason why mom was distraught. But I think the piece that we perhaps should have known is that this was just a different presentation than the initial irritability starting in May. But they got him a helmet to at least protect against the self-injury because we wouldn't otherwise know what to do. So the time in August when I admitted him on the unit, I admitted him with autism spectrum disorder, right? Something I was an intern going back to is just what even, how can you look at what you're looking at and call that just based on just part of the autism and not, I don't know. I feel we did a disservice by not expanding our differential in that moment. But he came on the unit, continued to hit his head. He stopped eating solid foods. This should have been the tip off, and preferred to eat Jell-O, applesauce. And we had a dietician consult on him. And the dietician, I'm not really sure what she saw, but the recommendation was that we get a dental consult. Oh, she found a large cracked cavity. At the end of September, tooth was taken out, and the kid stopped hitting himself. So the course of essentially the beginning of all these issues to the end of it, October 2021 to September 2022. We could have done better. We should have done better. A whole year to figure out something that took three hours in the OR, and the kid essentially getting his life. Sorry about that. Getting his whole life back is, taking a year to get there is a little disappointing, and why I felt the need to change how I practice. And I'll get to that in a bit. All right, so the talk you came to see today is chronic pain in children, nonverbal children. So before we get to that, what do we already know about pain in children? There is not a lot of data out there studying pain in children, because you think of chronic pain as mostly middle-aged people who are coming to the hospital complaining of chronic pain, less so children. Or one could wonder whether we ask enough, right? That's the other side of the coin. So not a lot of research out there. There was one major randomized control trial that looked at cases from 1991 to 2009. It found that 8% to 83% of children in the study reporting having headaches, 4% to 53% reported abdominal pain, 14% to 24% reported back pain, and 4% to 40% reported musculoskeletal pain. And then multiple pains, up to 50% of people reported that. And we also saw that prevalence was generally higher in girls. And the girls part was a bit surprising. But increasing with age, that seemed to be expected. Because chronic pain, undiagnosed and untreated, is only likely to get worse, even the ones that are diagnosed with good intentions, sometimes do get worse and worse and worse. And the last bit was lower socioeconomic status was associated with higher pain prevalence, especially for headaches, which that bit, lower socioeconomic setting or socioeconomic status, causing worsened outcome is kind of something we've just come to accept as part of our health care system. So that wasn't too surprising. But yeah, 2009 was the last big data we had. Until in 2021, Journal of Pediatrics published another data that looked at office visits between 2007 and 2015 for people under the age of 25 and what their presenting complaints were. And this found 28.6 million people over that nine-year period reported chronic musculoskeletal pain. And over 3 million annual visits for chronic pain in young Americans. Again, another thing that we don't evaluate or are privy to enough to talk about in our young populations. So yes. Now, if you look at all of the data, I'm not sure if you caught it, and what our patient, what do all these people have in common that my patient didn't? I can ask these people in the emergency room at 4 in the morning, tell me what hurts. They'll tell me this elbow, the back of my neck. But my patient couldn't. And when it's 4 in the morning and you're on call and it's tough, you're covering the whole unit, just reflexively, you move through the stages a little bit quick, right? And more likely to miss something. And when the patient can't tell you what hurts, sometimes you just revert to either taking what mom has to say, and if mom says it's irritability, then it's irritability. And we'll admit him and figure out the rest later. But what can we do for people who can't tell us what hurts, right? So let's talk about specifically chronic pain in children. So what do we already know about some hypotheses, ideas, some really dangerous ideas that have been peddled about children with autism spectrum disorder in the past? So some things that we know likely to be true is there may be some abnormal difference in the pain communication and pain sensitivity in children, but not in the way it had previously been presented, going as far as some people accepting that children with autism may either have a reduced or absent sensitivity to pain. And also, you know, prolonged exposure to chronic pain, like I mentioned in the beginning, is likely to lead to mental illness and addiction and poor health outcomes in the future. But new research is starting to, you know, paint a different picture of, yes, there is a difference in the pain processing, but that doesn't mean that the pain isn't there, and may even point to hypersensitivity to pain in children with autism spectrum disorder, more of a reason why we should pay attention to it. So, okay. All right. So for our study, we try to keep the hypothesis simple, because the more we went into this, the more we realized that it is quite difficult to evaluate pain in a person who can't tell you what hurts and where hurts. But we hope or hypothesize that caregivers of children with autism are more likely to report chronic pain in their child with autism compared to the caregivers of children without autism. And more children with severe ASD will have their caregiver report chronic pain than children without ASD. And I think, you know, the third bit is something we do have to concede, that there are a lot of confounding factors that may make it difficult to draw direct lines between X leads to poor chronic pain outcomes in children, but some things that we were hoping to find is a medical home, which is a home where the child just feels supported and caregivers know what their needs are and are able to attend to that, you know, in a meaningful time. Fathers and mothers' physical health themselves impacts the child's health and, you know, family characteristics like resilience are also likely to impact. So even if you're giving a survey or a scale, one person coming back with a 7 on that scale may not be the same as another person coming with a 7 because of a lack of a medical home or lack of a family member who knows how to provide care appropriately for the patient. So what were our questions? We were hoping to find that children with autism spectrum disorder are likely to report chronic pain than children without autism spectrum disorder and how much of an impact the family dynamic has on that. But the third one is perhaps the sort of paradigm shifting question, whether there is a connection between the severity of ASD to how much the person presents with chronic pain. So what did we find? Firstly, we found that boys were four times more likely to have autism than girls. This is something that has been pretty established in the literature already. We found slightly lower occurrences of autism among Asian and non-Hispanics and slightly higher among blacks and multiracial people. And more children with ASD had public insurance or a combination of public and private versus children who don't have autism are more likely to have private insurance. I mean, this may be just based on how our healthcare system is structured with disabilities being capable of having Medicaid. But practicing in Manhattan and Harlem, I see it being kind of spelled out in that way, where the poor black kids have state insurance and the Upper West Side kids likely have private insurance. But enough of that. Okay. So what did the data end up showing? So as you see here, the first question being, are children with autism likely to present or report chronic pain than children without? And there is about 8.6 percentage points more likely to present with chronic pain in the ED than a child without autism. And we also looked at 86% more likely to report, sorry, the caregivers are 86% more likely to report that their child has chronic pain if the child has autism than if the child does not, which is a point we sort of took this and ran with it and trying to decide how we can get the families involved in evaluating this child. And one more thing that the data showed was children, girls, males with autism were, how do I want to say this? Sorry if there are any buttons, statistics, status in the crowd. But so we have children, both children, male or female with autism spectrum disorder are more likely to report having pain or caregivers report having pain. And there was also seems to be an increase in percentage-wise the female children with autism compared to males. But if you look at the greater picture of boys having more likely to have autism than females, then those numbers track. Okay. And this is mostly just repeating. Oh, okay. So one thing I wanted to say here is that compared to children without ASD, there is a statistical significant presentation in pain, but within the severity levels, and this was our question number three, there seems to be no statistical difference between the severity of autism and the pain presentation, which means, you know, somebody who is verbal, highly intellectual versus somebody who is nonverbal or, and, you know, needs assistance with ADLs, the level of chronic pain presentation to ED, there doesn't seem to be a statistical significance in this difference. So what even is the point of this talk is that I'm hoping that, that I hope to never repeat my mistake or, or it ends up, it worked out, but it's a matter of what could I have done differently. And the take-home is just consider adding chronic pain to the differential. Just even if that allows you to just ask a few more questions, maybe the patients will be better off for it. So, and also remembering that, you know, girls with ASD have high prevalence rates for chronic pain, about 30%, or 3 in 10 girls with ASD are more likely to present with chronic pain. Yeah. So having wraparound family interventions, staying attuned, or sort of having the patient stay attuned and knowing the patient population, knowing the poor health and the parents are likely to lead to poor health in the kid. And now, you know, for the parents, something that could be useful is what sort of pain behaviors, like what should you perhaps keep an eye out for, an eye out in your child. So vocalizations, there's crying, whimpering, moaning, gasping, sharp intakes of breath, grimacing, frowning. You know, I don't want to go through the whole lot, but this is sort of the things to look out for. And if you're able to memorize all of this and know to look out for it, great. Most parents, if it's their second child, they're a little bit more attuned. If it's their first child, sometimes there are some difficulties. So I want to get to the crux of this, which was when I was doing a post-mortem of this case and hoping to sort of cut myself a little bit of slack as to, you know, what I deemed to have been a mistake that I made, what could I have done differently? There are pain scales out there, not used very often. It's not something that, you know, had been brought to my attention, but the main one that is used is the NCCPC-R. So the full name is Non-Communicating Children's Pain Checklist. It's a 30-item checklist, pain assessment tool designed for nonverbal children. I will say it again, it's a 30-item checklist. And if you see it up there, that is the miniature version of that. And I cannot tell you covering an entire hospital in the middle of the night, honestly, I'm not sure the likelihood of being able to administer this scale and use it. But it does seem to be relatively successful. But there is also this other pain scale, RFLAC. It's a little bit quicker to use. And it's a 5-item assessment tool. It rates pain from 0 to 10. And the take-home is just higher levels, higher ratings on this should be, should essentially see the family or the parents or the caregiver to seek higher level care, right? And it allows the parents to, like, individualize this, adding sort of different behaviors that they know to be normal for the kid. And it actually seemed to be more statistically significant, sorry, more sensitive than the NCCPC-R, which seems to be more commonly used or commonly available, but not really used that often. So this is what the RFLAC looks like. It's a very, very simple tool to use. And we chose this one because not only is it easy for a provider to use, it is very, very straightforward for a mother to use. So this is something that, you know, could be administered to every non-verbal child being brought into the emergency room for a, like, a nebulous sort of murky presentation to, at the very least, give thumbs up, thumbs down, whether it's chronic pain or something else. And I think had this been, you know, had we leveraged something like this to help, you know, my patient in particular, perhaps it would have come to the forefront that there may be something else going on here than 11 months later. So that's essentially the big, biggest sort of take home here. And I thought maybe it would be helpful to talk through, you know, looking at this scale and hearing the story and, you know, what could have, I mean, you know, actually going through yourself, if anybody is able to, you know, come up with a number out of 10 that, you know, this child would have scored. Let's put that back on. And with, you know, just to see what something different we could have made, done. And also, you know, any comments about what could be different, anything that I could have done differently. That's the end of the presentation portion of today's talk, and the rest of it is mostly for us to discuss, you know, any other questions you may have. So yeah, that's, this is the RFLAC, I believe in it. It's quick. It's relatively easy. It's written in sixth grade language. You can get it done in five, 10 minutes waiting in the waiting room, and it's not, you know, something that could be very, very useful moving forward. So yeah, I hope you'll take this back to your institutions and force all of your residents to do it. So yeah. Thank you for coming. I really appreciate you being here. So the rest is, you know, open to the floor. Any questions, anyone online with questions, I have the screen here. If you type in a question, it'll pop up on my screen, and I would do my best to answer that for you. All right. Thank you. Did you have a question? Oh, okay. I thought I saw your hand. Sorry. That's a very good question. I was not ready for that. I will have to look that up, but I believe it should be, because it's been around for quite a while. This was actually more common before the NCCPCR came in, because that was supposed to be more, like, to paint a clearer picture, but it seemed to be so cumbersome that it's, you know, no one uses it, exactly, right? So, but yeah, if there isn't, we should definitely work on a Spanish at least one. All right. Well, thank you all for coming, and have a great flight or journey back to your homes, and take care. You're welcome.

chronic pain

nonverbal children

autism

pain assessment

RFLAC scale

healthcare providers

parental involvement