Primary care providers can protect young patients’ quality of life and future well-being by understanding the types of lasting symptoms that may result from traumatic brain injuries as well as the prevalent gaps in care that create distress for kids and families. Pediatric neurologist Bethany Johnson-Kerner, MD, PhD, presents her insights on the barriers to follow-up care, communicating with schools, talking to parents and using resources wisely. Bonus: Learn about the new Brain Recovery Education (BREd) Initiative.
question from one of the chief, such as you know, where do we send our patients with brain injury? Um you know, what are the various options for outpatient care? So I'm really thrilled to be here to talk to you today to talk about a new option that we've created in the last couple of years that we haven't really done much outreach about until today. So excited to tell you about. Um I have nothing to disclose. So with that I'll move into what I'd like to hope to accomplish to impart to you at the end of this talk to understand where to refer patients with different types of brain injuries um depending on where they are in their process of recovery as well as disparity. Maybe start the process of symptom management. We know it can take some time to get plugged into a specialist and to guide families to available appropriate cognitive rehabilitation resources that may be available in their area as well as set reasonable expectations for families. So to accomplish those goals I'm going to talk about the epidemiology of TV. I gaps in TV I care both nationally and locally. And then just for perspective, we started thinking about this problem in 2019, so I wanted to share five key insights that we've learned in the last couple of years. Um as we've developed a follow up clinic that's in place now as well as share some pearls for symptom management before I go into the epidemiology. I wanted to bring up a case that I think illustrates a lot of the challenges about patient tv I care and this was a patient. I saw back in 2020 and I followed him for the last couple of years. And this feature highlights a lot of the gaps that can be present in outpatient Tv. I care as well as some of the challenges we face. So this person is a 16 year old with a pre morbid diagnosis prior to the T. V. Eye of A. D. H. D. As well as depression. On. Wellbutrin who came to neurology is actually an urgent referral after moderate T. B. I. He had had a motorcycle accident a couple of months prior. His Wellbutrin was stopped during his um hospitals day which is very typical for someone with an acquired brain injury. Um he was discharged after three days of being in the hospital despite having a scope fracture and subdural which is also very typical. Um the average length of stay for patients with mild complicated or moderate T. B. I. Is usually 3-4 days at our institution was certainly less than seven days being typical. And he had cognitive communication deficits found on speech therapy evil but he didn't have any occupational or physical therapy needs. So he wouldn't meet acute rehab criteria. Which is also very typical for the complicated or moderate TBI I population. They lived a couple hours away and family was unable to get connected to any outpatient speech therapy services although they had been recommended or mental health services. He did have a prior psychiatrist but that provider understandably felt uncomfortable restarting medications given they had a new brain injury. And the patient had an established care with neurology for some of that anticipatory guidance as far as recovery goes. And with his diagnosis of A. D. H. D. He did have a preexisting individualized education plan and I. E. P. And he was appropriately given a letter for school from the hospital system but family wasn't sure who to contact at the school. And right now in our system like many hospitals we don't have outpatient educational liaison so there's no point of contact or a person that family can go to to ask those questions. So I think this really illustrates a lot of the challenges that we face. And you'll see as we have developed this program how to start to tackle some of these needs. But before talking about our new clinic program I just wanted to review some of the basic definitions for T. V. I. And these are really um Some of the older definitions for Tv. I. Thinking of mild, moderate severe. Um and but they've persisted over time even though we don't tend to get imaging anymore. Certainly with p carne has really changed when we get imaging for these patients. Um But it's still a really useful definition to review because it's often used in research and it's still sort of the standard when we think about triaging these patients. So milder concussion, you kind of loss of consciousness. It just tends to be later than 30 minutes with the best GCS on the first day of presentation being 13 to 15 and then normal imaging, if imaging is obtained at all with moderates TV I usually having abnormal or transient changes on imaging and severe, certainly having abnormal changes on imaging. And while this isn't a talk about concussion per se, I think it's useful to spend a little bit of time just thinking about what concussion is because there's a lot of confusion around the terminology and still sometimes causes some confusion for patients. So traumatic brain injury is the same as smiled T. B. I. Is the same as MTV. I you see those present. So sometimes patients with concussions are labeled MTV. I sometimes they're not like many of our terms of medicine, I tend to talk with the family about what it means and if the terminology is helpful for them to use it and if it's not helpful for them, if it just creates stigma for them and they have a concussion, we don't have to use that terminology. Um concussion is caused by a blow to the head or body, there does not have to be a head strike. So sometimes there's confusion about the lack of a head strike. Can you still have a concussion? Absolutely, you can and it may or may not involve loss of consciousness. So even if the patient has lost consciousness, if it's for a brief period they may still meet criteria for concussion, what actually happens in concussion in the brain? It's still an ongoing area of research. This neuro metabolic cascade was proposed by chris giza who's at U. C. L. A. Runs a big sports concussion center down at U. C. L. A. Back in 2001. But basically the way I think about it from a scientific perspective is you have both an increased demand at the time of the injury when you have a jolt of the brain and you have decreased supply. Often there are changes in blood flow. Now, how that actually occurs and how injury occurs is certainly still an area of research. But the thought is as far as the brain actually moving is you have an influx of excitatory neurotransmitters as well as you can have some shear injury on the axons themselves. And if you remember from med school, the neurons, the cell bodies are really dependent on their axons to bring them all their nutrients. You have a perfect storm set up where you have a really increased demand and a decreased supply of what these neurons need, which can put them at risk for cell death. As you can imagine, this is hard to explain to families. Sometimes it's still an ongoing area of investigation. So often we think about concussion as defined by the symptoms that can present with concussion. And just to remind you as you know, concussion is really a clinical diagnosis. So there is a lot of research underway, as far as biomarkers, mechanical devices, headsets that athletes might wear to detect concussions in a sensitive timely manner. But for now we're really left with um it as a clinical diagnosis, especially the patients I see who are maybe even weeks or months out from their original injury. And I think it's useful just to review the different domains that concussion can impact. A lot of the times. We think about the physical symptoms, whether that's headache, nausea, vomiting, balance problems, a lot of increased sensitivity to stimuli. Those are very common, I'd say in the pediatric population sometimes we get less exposure comfort with some of the cognitive emotional and sleep changes. So cognitive one that can be very present changes in memory, repeating questions almost like a transient global amnesia. Picture where you can have the patient saying what just happened? Why am I here? And as long as that resolves within, you know, a couple of hours or so it still needs criteria for concussion. Um there can certainly be a lot of emotional changes. Emotional ability changes as well as changes for the parent to and we'll talk about parent coping after concussion. Um, and then sleep changes as well. So sleeping more or sleeping less than usual is very common and concussion symptoms is also commonly used to refer to patients with mild or severe TBI. I it's really just referring to these um collection of symptoms that patients can have. As far as the epidemiology of TB. I. It's very common. Um So studies from the CDC have shown that for Children ages 3 to 17 the range is different is about 3 to 7% and that can be higher for adolescents. Um You know, estimating this is hard and a lot of the best work done by the CbC is actually through child survey in schools. So it's certainly hard to get a good sense because many people never present to a pediatrician for follow up or to the emergency room but based on our best efforts at obtaining the epidemiology, this is this is what we have. So quite common as far as the breakdown of severity you can see here that 85% are going to be in the mild or concussion category 13% with moderate T. B. I. And only 2% with severe T. B. I. Um There is an increased risk of concussion for males compared to females and there is an increase in T. D. I. In rural locations compared to urban locations. However, the CDC hasn't established a clear relationship between other socioeconomic status markers and incidents of concussion including health insurance insurance status, household income or parent education level. So returning to our case and just a reminder for those who may have joined late to sort of frame how we started thinking about the brain recovery education initiative. We had a 16 year old with a. D. H. D. Depression previously on Wellbutrin now on no medications who was referred to neurology after a moderate T. B. I. And just as a reminder really this initiative is focusing on the moderate Tv I population which formerly didn't have a medical home here at our trauma center. And I think this case really illustrates the key gaps in the medical system, not having a clinic designed to meet the needs of these patients. Um limited access to therapy within their home um location and then difficulty communicating with the school. It's very hard without staff to be able to communicate cognitive changes he may have in the school setting. So in developing this program I wanted to share five key insights with you. So the first key insights we've had is that tv i care is best done as a team sport. Um Oakland is a trauma center as you know and most large Children's hospitals do have a multidisciplinary T. B. I follow up program. Sometimes I find it helpful just to look around the country and see what other places are doing. We're so used to what we do that sometimes we forget you know that there's an ecosystem of programs out there and so I put some examples including Cincinnati, Children's Children's healthcare of Atlanta and Kennedy Krieger who all have multidisciplinary Tv. I follow up programs Those can look different. Sometimes it's led by a rehab doctor, sometimes a neurologist but they tend to also have um neuropsychologist as well as feature occupational therapists who really have experience in the therapy component of rehab. After the medical diagnosis Most frequently Children see a doctor the year after discharge. So in follow up studies about 50% 56% of kids will see a physician. But the follow up studies have also shown that one year a third of kids have unmet needs and that may be due to a variety of reasons but it's not just related to lack of services in their area. The most common reason um that kids were not getting services is it wasn't recommended by a doctor. So something like cognitive rehab was not recommended. Um So good care starts with the medical diagnosis that you the physician of the clinician, you know, really helping the family prioritize what's the next thing they need to do but that's not enough as far as needing the therapist. So prior to starting our moderate TBI eye clinic or the bread clinic, they're different referral options. So for rehabilitation. Often these patients meet criteria if they have two out of three in need. So speech oT or physical therapy like we talked about and then those patients would do an acute rehab stay and get plugged into the rehab system from there. So really appropriate more for our severe T. B. I. Or those with more motor deficits. And then we also have the sports concussion clinic, which is an awesome and multidisciplinary program as well. Um let out of our department of orthopedics and they have a neuropsychologist in the program as well as therapists, physical therapists and their main criteria is greater than two weeks of symptoms. So not all patients need to be seen in a concussion clinic if they're recovering well, they have sports related concussion or it's primarily focused on sports clearance needed for returning to play after a concussion. But one of the things I hope to show you today is that we know that the leading cause of traumatic brain injury and kids is not necessarily sports related. Um non sports related concussions are twice as high as sports related, whether that's due to falls objects hitting the head or motor vehicle crashes. And while neural has operated in the past as a grab bag for patients, maybe that didn't meet criteria for rehab or didn't meet criteria for sports concussion clinic. We really, prior to the clinic we started didn't have that multidisciplinary sport which support which we know is really standard of care for these patients. The second key insight I've had in developing this program is that cognitive rehabilitation is really heterogeneous and hard to access. Again, as physicians, we often don't get a lot of training on the therapy side. What actually happens in the process of cognitive rehabilitation and we really get exposure to what happens in our area locally, which may not meet up with what happens nationally when I lie across the national landscape. It was really interesting to see how many different possible providers may provide the service and how related it might be to your insurance or your financial means. So as far as possible providers that can provide cognitive rehab, their speech therapists, their occupational therapists, there are community groups which are mainly focused on adults. And then I put here private psychologists and educational therapists in the medical setting. Our neuro psychologists tend to do more in the diagnostic piece, but they don't tend to follow patients as far as intervening and giving them cognitive strategies and rehabilitation. But in the private world, neuropsychologist may follow patients and may do some of that cognitive restructuring work with them. And then educational therapists are an interesting category that I didn't know about until I started working in this area. It's actually quite a robust profession here in California. In large part that's because there aren't really that many neuropsychologist out here, neuropsychology is heavily rooted in the east coast of a lot of legacy training programs there. There are of course neuropsychology training programs out here on the West Coast, but educational therapists are essentially educators that do additional training in neuro development and psychology, um that can work with our families as well, but again, that would be an out of pocket experience some insurance programs used to offer a few sessions of educational therapy but that's really gone away as an insurance benefit even for our patients with private insurance. So to touch on some of the barriers which I'm sure you all have experienced with your patients. There's a real shortage of speech language pathologists, especially those who take medical um here at Children's Oakland right now we're fluctuating between having speech therapist and not having speech therapist to work with our patients. And other academic centers like stanford or in a similar position. I think their wait list right now is about a year to see a speech therapist and speech therapists out in the community can work with these patients of course. But many of them don't take medical because of the challenges of getting reimbursement from medical California Children's services which patients can meet particularly if they have motor deficits after they're acquired brain injury. Is another option for occupational and physical therapy. But anything cognitive related is not a benefit of CCS. So they don't have speech therapist at CCS. And even thinking about cognitive rehabilitation with an occupational therapist like they might do in another setting is really off limits for CCS as far as they go. And then of course the school where we think about our patients returning to school but they certainly don't provide cognitive rehabilitation you know with idea and special education rules they have to provide accommodations and supports um and even a modified curriculum like you would see for an I. E. P. But anything in the sort of realm of rehabilitation or thinking about cognitive skills outside of the classroom is really not a part of their realm. And then we're left with the fact that you know, it's a very heterogeneous body of evidence as far as what to do with these patients. So let's say you can get them connected to a speech or an occupational therapist or even a neuropsychologist. There's a lot of provider to provider variability and what's actually done for these patients. So a lot of barriers as far as cognitive rehabilitation doesn't mean it's not worth doing, just means we have to think carefully about it. The third key insight that I've learned about deeply now is that medical to school communication is a longstanding challenge. Um and this idea of having medical staff members to communicate with the school really grew out of the pediatric oncology field in the 1970s as childhood survival was increasing. And they were recognizing oh these kids are going to have to reintegrate into their natural or the school setting. And how do we help support that? And so he'll the hospital educational or academic liaison which has a major center at stanford um is the premier liaison organization and they were started in the early two thousand's. Um and you guys may know that we have terrific liaisons at both Oakland and mission Bay. But we just have a few um to help supplement the awesome work that our inpatient school program does and these liaisons are primarily donor funded. Um So at Mission Bay we have I think one for neuro oncology, 11 halftime FTE for epilepsy. And currently at Oakland status right now is, we don't have outpatient educational liaisons. We have our inpatient teachers who of course do a great job putting together a letter for school for restarting school. But certainly they don't really have the staff bandwidth to do troubleshooting as far as like who the family should talk to after they've been discharged from the hospital. And as I've done research and talked to educators around the Bay area. This is really the stance of schools that T. B. I. Is a low incidence, high needs issue for school. But when we think about the epidemiology of this, it makes sense. So there are lots of Children admitted with acquired brain injury as we saw up to 10% of kids can have A T. B. I. Um as far as those who are hospitalized, that's about 6700 kids each year. But over 1 to 2 years at any given school, there will just be one student impacted. So if you think about, you know, all the needs that schools have to meet. Um T. B. I. Is really low on their priority list, which is understandable and that shows based on how I. E. P. S are assigned. T. B. I represents just 0.2% of I. E. P. S. Although we know from other states that this is probably a big under recognition of that in massachusetts, it's closer to 20% of their I. E. P. S. So we know that there's a lot of variability in state guidelines and a lot of these kids are probably also codified under O. H. I. Or other health impairment. So how can doctors and educators communicate and if they even need to communicate if you believe that, and I hope to convince you that they do. Um But there have been some studies that looked at how doctors do on our knowledge of I. E. P. S. And we don't do very well. So the study from 2013 was based on a survey based um uh study for pediatricians and unfortunately we get questions about I ps correct about 59% of the time and while we understand that it's important and we want to help our patients in general, we don't do a good job of understanding the requirements for special ed or feel comfortable identifying who should have special education and who should not. It's just generally not a part of our training, even though the ap has come out with guidelines saying that it should be part of the knowledge base of doctors, but I think we all know that there's limited time. Um and it's hard to keep up with with everything there as well as it can be state based and there are some innovative programs I just want to make you aware of that are working on this problem if it's an area of interest for you. So there's an organization called Seabirds in Oregon that does teacher training after traumatic brain injury. This could be an option in California. But unfortunately there aren't a lot of ongoing, there aren't a lot of requirements for teachers to do on like continuing education. There's not a lot of motivation for providers to do this, especially given it such a low incidence problem. Um In addition there's this group called Brain Steps in pennsylvania that has community brain injury teams san Diego used to have some of these brain injury teams but again they've gone the way of the past. Unfortunately it's just hard to funnel patients into these programs. And then there's also a really interesting clinic out of boston medical called ease clinic engagement and access to special education um which is really an I. E. P. Clinic run by a pediatrician as well as a lawyer that participates because often what this family needs, family needs are greater advocacy around their I. E. P. Needs in their school system. The fourth key insight that I learned in working with this population is that community programs are not widespread for kids and families with T. B. I. In California. So I mentioned a program like brain steps which is just in pennsylvania. We do have we don't really have anything similar here. Um Certainly most of the branding like from the C. D. C. For concussion is really about sports concussion. So again are more prevalent. Non sports concussion population doesn't really have much of a home or community to have their questions answered. There are a couple of local programs for adults that may be useful for you to know about. So as your patients become older or um able to participate in adult programs, the Shuri Center based in marin it's terrific. They do a lot of um free support groups as well as group cognitive rehabilitation groups and then there's synapse which is a concussion support group and there's a chapter in Berkeley as well as at stanford. So a really good support group as well for adults. Many of our families um would maybe fit into this category of what are called California, P. T. I. S. Or parent training information centers. But historically the branding for these groups has been more for kids with chronic disabilities who have been present for a much longer time like autism cerebral policy. Um Even things like A. D. H. D. Or dyslexia really previously hasn't been targeted um at the acquired brain injury or TBI I. Population and that's something we're working to change and I'll touch on our work there as well. The last key insight is the sort of interesting um role of shame and blame, which is something I started thinking about when I was seeing these patients and there is data from families that even if you provide them with a letter and I p to do accommodations at school, families don't always accurately share that information um with the school. And that was interesting for me, citing that they don't want the school to think of their child is different or they want things to go back to how they were before, which I can completely understand. And I was also interested in how medical providers may react to these patients who were previously on a typical developmental trajectory and then have a brain injury. And so there's a study Um that was done about 10 years ago and this is hard to study, but I just wanted to put up these questions and just see if you have a different reaction to these patients stems. So the first one is a 14 year old brought in by ambulance after a motor vehicle accident struck by a drunk driver versus a 14 year old brought in by ambulance after an unhealed knitted by accident and I certainly sometimes feel a different reaction. It's interesting to see the information we put in a patient stem. Um but this group Redpath in 2010 was studying this and basically did survey groups of both experienced and unexperienced clinicians as well as different types of clinicians and what they found was that if an individual is to blame for their injury. So the un helmeted life accident versus being struck by a drunk driver, so sort of a blame injury versus a no blame injury, qualified health care professionals, meeting those who have more experience in the profession, have more prejudicial attitudes than those who are maybe newer in the profession. And unfortunately it's been shown in many studies that there's a negative relationship between prejudice and helping behavior for qualified health care professionals. Unfortunately, the more we think they are to blame for their injury, the harder it becomes to want to help them, which is something to be aware of. So how do we, how do we help mediate this? And I'm certainly not an expert in this area, but I am interested in this work of attribution and de biasing, and I really think the first step is really just education that this bias exists out there is uh you know, as providers to be aware of this. Um and I think awareness of that bias is the first step to us, you know, helping to rebuild those helping behaviors which we know will help our patients regroup um and exposure to individuals with counter stereotypes, so seeing patients who have a really positive outcome and maybe turn things around after their T. B. I can also as well, I wanted to return to our case and as a reminder that our teenager referred to neurology after a moderate TBI. I um and we reviewed his the gaps in his care and I hope through giving you those five key insights, you have a deeper understanding to the gaps that were present for him, the medical, the therapy and the school systems. And so with that we started planning this clinic for moderate TBI. I um in 2019 and we launched the clinic in 2021. And so I'll spend a little time telling you about how her clinic is evolved over time and how it's functioning right now. What we do in clinic. So we really wanted to organize the clinic around a segment of patients with a shared set of health needs. So I have to find that population for you and we're using our population right now is a mild complicated to moderate Tv. I. So those with a really high burden of cognitive behavioral symptoms more so than physical symptoms, which might be more appropriate for your rehab population. And the reason that a lot of these patients don't wouldn't be appropriate for the sports concussion program is many of them are, almost all of them are essentially scan positive. So they have findings on their M. R. I. Scan or cT scan if they had a scan, What we want to do is making sure we're meeting their needs. So who needs to be in the clinic. We want to track their needs and then track their outcomes. So we've had about 160 referrals over two years. And like I said prior to today, we haven't really done a lot of public outreach about this program. So I'm excited to see what happens to our referrals after this presentation today. We've had plenty of referrals and it's been interesting to see sort of the breakdown of what are the needs of the different patients. So this is an informal graph that I made with the spec different specialties on the X axis and then the frequency that patients need them on the Y axis. So patients may need multiple specialties. And so I have speech occupational, physical neurology rehabilitation, the physician component, neurosurgery, mental health, social work, neuropsychology and teachers and we've experimented with different staffing in the clinic. But ultimately what we've landed on is having a neurologist here as our high need for these patients. A neuropsychologist with about half of the patients having needing probably a neuro psych evaluation to help move their care forward and then what we don't have right now. But what we'd really like to have is a teacher and educator, somebody to help fill that medical school communication fees, which is something we'll be working on in the next few years, were also really lucky to have a physical therapist who comes to clinic. We'd love to have a speech therapist as you can see that's a really high need as well as social work for this population, but there really just isn't the outpatient staffing right now. So we have to do a lot of care communication and coordination to help fill those gaps where we can. And just thinking about this teacher piece, I was really interested in how doctors think about education educators and educational liaisons in their clinics. So I did this collaborative survey study with, with neurologist mike taylor and Nate Jensen, a rehabilitation position at Cincinnati Children's. Um and there are papers under review, but we did a survey of about 90 neural My interests trying to understand their return to school practices, sort of how do they manage this. Um, and so 92% of us ask about the return to school after brain injury, but most of us report inadequate staff to communicate with the school. So it's a real challenge for us. And it's not a new problem by any means with cognitive symptoms here in red being the predominant cluster of symptoms that our patients really struggle with for successful reentry compared to physical challenges, which is a much smaller percentage symptom control things like headache, dizziness, things like that and then behavioral problems being important as well. Um but out out far outpaced by the uh cognitive challenges, the patient's face. One thing I wanted to do in our clinic since it's a new program is to track outcomes, which is nothing I've ever done in a clinic setting before. I see patients essentially full time and have never taken the time to track outcomes over time. So if any of you are interested in implementing outcomes tracking in your clinical programs, I'd be happy to try to be a resource. It certainly takes some courage and takes a little bit of legwork. But with a couple of months we were able to get this up and running. And so now all of our patients that are seen in person are given a piece. QL which is essentially a short form takes just a few minutes and it goes through four domains of wellness. This is a form that's commonly used in Tv I research, physical, cognitive, social and emotional. And so we started collecting these a couple of months into our clinic programs. We started in december. We have about 27 responses so far. And here you can see the breakdown of the patients we have. So about half are mild, complicated T. V. I a third are moderate to severe T. B. I. And then we have a handful that are scheming and hemorrhagic stroke because we're seeing those patients as well in this clinic and this is certainly new information certainly not ready for primetime or publication but I wanted to share with you this preliminary data we have or we can track over time. So this is just one time scores for patients but we also have the ability of course to um track outcomes longitudinal e so we can see here on the why on the X axis rather is time post injuries. Because because this is clinical work. So we're capturing people at different times after their injury. We're not starting everybody at time zero and then we have on the Y access the quality of life which is the transform scale. So 100 being perfect quality of life. You're doing fantastic and zero being your quality of life is very low. And so you can see here in green I have the moderate to severe TBI I. Families and the mild T. B. I. And the way that this question it works I should tell you is that the child and the parent does the survey. This is for the parents scores but the child scores look very very similar. It's interesting to see how they run together. And I just thought it was interesting to see such a wide scatter with some patients reporting a quality of life as low as 25. So very low and others very close to 100. So doing very well. Um And I just took an average of these just to see and it was really interesting to see that um the average is about 63 for both groups regardless of the severity of injury. And this is actually not new as something being shown um in the literature but before I tell you about that finding um I wanted to take a pause and think about why why even do the Petes QL is this a score that physicians even think is worthwhile? So again, this is part of the research project that we're working on right now to serve a neurologist and psychiatrist to understand in an ideal world, what outcomes tracking would they would they use versus what they use right now in their current practice. And so here I've listed various types of outcomes that people may use. So, satisfaction, attendance, informal quality of life, academic outcomes, neuropsychological testing, formal quality of life for other markers. And right now really, satisfaction is one of the highest markers that specialty physicians use when thinking about how successful is their return to school. It was really interesting to see that even in an ideal world, a lot of us really think that satisfaction should be most commonly used with formal quality of life being a close second. Um I just think that's really interesting because you know, what makes a parent satisfied is very soft and can be hard determined depending on what they're hoping for. Quality of life. Seems like it would be uh you know, something with a little bit more firmness to it as far as following these patients over time, but I certainly understand satisfaction is really important for our families. Um and and they capture things that are not present in quality of life, but as far as thinking about this insight that um you know, potentially quality of life is not necessarily related to injury severity. I wanted to sort of give you some context for this by talking about two cases briefly and then some literature that helps support this idea. So I wanted to talk to you about two companion cases. So jules and SAM where they're both teenagers and jules had a concussion without loss of consciousness while swimming. Um They've had a normal M. R. I. Brain um but they've had a lot of persistent dizziness and they have an I. E. P. For reduced coursework and their Pete's QL is 60. Sam by contrast had a severe TBI i from rollover motor vehicle accident was hospitalized in the pick you for several weeks and it did an acute rehab stay. Um Had an M. R. I. Brain with diffuse axonal injury shown here has an I. P. For reduced coursework. And Pete's QL is 65. Um So certainly for these patients, severity of injury is not necessarily um related to their quality of life afterwards. And this isn't a new finding. Um So I wanted to mention the track Tv. I study which UCSF is a site for and in adults particularly in the mild TBI I population they've tried to understand why is it that some patients do really well and why is it that others struggle and through detailed neuropsychological and behavioral profiling. They found four different distinct phenotype that patients may fall into um with this access of thinking about resiliency versus impaired. And then uh those with more emotional difficulties and more those with more cognitive difficulties. And I think we can all relate to the seeing families for concussion follow up. Why is it that some really do well and some struggle. And it's interesting to see that um this has certainly been described well in adults recently and also interesting to note from their study that milder brain injuries associated with more severe symptoms but more severe injury at outset. So being in the pick you for a longer time is associated with more pain. So again injury severity, Glasgow coma scale, all of that's not necessarily related to what their recovery trajectory or outcomes will look like in the outpatient setting I wanted to and then one of their side just to mention um this is really important because adults are one animal but of course our patients have parents which can often really changed the dynamic and not not always for the better, but this was a study that was done in 2012 trying to understand the role of parental distress in how patients recover after brain injury. Um and so they had a cohort of patients with T. B. I. And patients with orthopedic injury. And through a variety of surveys were characterizing the parents as low parental distress versus high parental distress distress. And unfortunately for the T. B. I. Population, high parental distress is associated with poor adaptive behavior changes in the child, which is not the case for those with orthopedic impairments. There's certainly something special about the brain and how we think about our identity and our recovery trajectory. So I wanted to shift gears a little bit and talk about setting families for success. What you can do while you're waiting for a specialty referral if you need one as far as thinking about symptom validation management and then adjective testing. Um so thinking about symptom validation. I did want to mention this. I know that ap guidelines are really to refer to a specialist for concussion care if you have symptoms beyond four weeks. But really up to 20% of patients will not have recovered at this time. Unfortunately literature sometimes calls them the miserable minority. And of course those patients I see a lot in my clinic there is more of a female predominance in this population but it's not uncommon for patients to have symptoms that can last longer. And I'm sure some of you have come across this murky entity called persistent post concussive symptoms. It's no longer a syndrome because symptoms may vary very much. Um But it's it's useful to think about the risk factors that we know for PPC. S. And that's really either a personal or family history of headaches, history of anxiety, depression or a family history of anxiety, depression, history of A. D. H. D. Or learning disability, pre injury, social difficulties and if the patient or the family has had an acute stress reaction to the injury. So all of these really common variables that we're seeing in our clinic all the time and history of A. D. H. D. In particular increases the odds ratio about three fold of having A. T. B. I. And then of course having a tv. I. Increases your odds ratio further having another tv. And when I started seeing these patients I was really struggling with how to talk to them about PPC. S. Because you know is it all concussion? Is that any other concussion isn't all emotional? I think it's something we really wrestle with. And so I wanted to share this bit of insight that I got from a really useful management of adults with tv. I. Handbook. And this portion is really really geared towards mental health clinicians that I found as a neurologist this was really helpful for me. Um The first part being the question is not whether this person has had a. T. B. I. When a patient has come to me for a concussion, often they're already under the impression that they've had a concussion. Um So I don't try to do a forensic evaluation if they've had a concussion or not because that can be a really dismissive experience for families because they essentially already believe that they have this brain injury. And then how do we actually what do we do with these patients? Um The guidance that they have is um the worst thing you can do with a patient who has severe chronic symptoms and is convinced they have a brain injury is to tell them that they don't have those symptoms and prematurely communicate this information. Even if it's true, the patient will be driven away and have a deeper need to find someone who will understand and treat his or her injury. But I really like the second piece of guys here, which is the second worst thing is to tell a patient he or she does in fact have a brain injury that is responsible for all of his or her symptoms. So often I obtain a family and they're really in this medical model of, I've had a concussion. You know, I have all these terrible symptoms and it's really over months of working with them that we can get to a place. But yes, you had a concussion or maybe you didn't have a concussion. Um, but your symptoms are really filtered through your emotional experience of the process. And so that's an important piece of the puzzle to hold for these families, I wanted to touch on, hopefully some practical tips for managing common symptoms after a concussion. Um, so things like dizziness, headaches, sleep changes. So with that, I wanted to give a brief case of a 17 year old who was referred to me for ongoing dizziness after concussion, no loss of consciousness and this was six months prior. So again, this miserable minority of still having a lot of symptoms after the percussion. They describe variable vertigo. So room spinning, both horizontal and vertical as well as this equilibrium, a sense that the ground is moving beneath them. No lightheadedness and not thinking about what the status, no dissociation. Thinking more about a functional neurologic disorder. Lots of triggers, um eyes moving too fast, standing too quickly, reading too quickly being in visually chaotic environments um and improved by staying still, not focusing unfortunately for many of these patients that fits into, you know, not doing their schoolwork. Um And while I think the ideology of this dizziness ended up to be a combination of things, I wanted to go through my process to think about sort of how what is a good approach to dizziness. One of the main features we think about as neurologist with dizziness is how long it's lasting, so seconds, two minutes. We tend to think about Ortho stasis. You know, a patient who's feeling dizzy on standing up be PPV. So dizziness with a sudden head turn many years disease is very unusual in Children, but it's usually associated with hearing loss. Patients with hours of dizziness. I think about labyrinth itis. I also think about migraine vestibular migraine is kind of a controversial topic, but it's certainly um you can see a lot of just dizziness and patients with migraine and those with pots. So autonomic dysfunction which can also be present after concussion dizziness that's going on for days. Um I think about a new mass. Um certainly our patients with concussion can develop brain tumors and other problems over time. It's always good to have your ears up for that. Um Superior canal. The distance is an interesting ideology and I wanted to mention that and it was something I thought about for this patient. Um If the patient has um dizziness that's provoked by loud noises or a ball salva, they can actually have an injury to the round window in the inner ear. Um and that can be potentially repaired via surgery. So usually I'll get imaging if I'm concerned about that. Um they can have convergence insufficiency. So this is a common one that I'm, you know, seeing more people diagnosed in the community with after concussion and of course they can have functional neurologic symptoms, which we usually manage with cognitive behavioral therapy if we can get the family and to see a provider. But I think for me, red flags would be abnormal eye movements if they have nystagmus with mild gaze deviation. Sometimes we get referrals for nystagmus at extreme gaze. So looking to both sides, which can actually be quite common in the teenage population, as long as the nystagmus on extreme days is symmetric and it's self extinguishes that can actually be within normal. So when you're looking for pathologic nystagmus. Nystagmus usually you want to look for a gay deviation that's about 20 to 30 degrees off the midline. So kind of looking to the side, if you think about a 45 degree angle rather than that extreme 90 degree angle headache is another really common symptom that were asked to manage. So this was a 10 year old who was struck on the left temple with a baseball bat three months prior presenting with ongoing headaches. And I will say that history of assault is certainly associated with higher post concussion symptoms. Um, when he gets the headache, he wants to go lay down and acquire dark room prior to the T. B. I. He had rare headaches and mom with some headaches as well. Um, He had a lot of migraine markers and I put these up here migraine markers as pediatric migraine equivalent as a neurologist. When I'm eliciting a history and I'm trying to understand, okay, what is maybe post traumatic headache? What is a new headache? A secondary headache. That worries me what is a migraine headache. It's helpful for me to elicit what are called migraine markers. So growing pains, car sickness and brain freeze are all things that we think about versus the pediatric migraine equivalence, which when present, um, increase the risk of developing, uh, migraine later, including colic hartocollis, paroxysmal vertigo cyclic vomiting and ace of algae migraines. So a lot of belly aches when present in the younger years and as far as how we manage these patients, I think it's just good to know that there's no treatment specific for pediatric post traumatic headache. So essentially we're manage them as patients with migraine. But I would just impart to you to have a low threshold to start a preventative in a patient with a migrant history or a family history. Especially if you're getting some of these migraine risk factors or migraine equivalents on your history, headaches don't need to be chronic to justify starting a preventative. Often they'll start a preventative if it's even just one day a month, but it's a really bad day and they're missing out on school or activities. Um and there are a lot of low risk preventative options. So often I'm seeing people still using Topamax or Amitriptyline, but the chance randomized control trial in 2017 showed that the placebo effect for pediatrics is really high. So you're going to see a 60% response from prescribing anything or starting any supplement. Um and not actually overshadows Tripoli and Topamax as far as their benefit. So generally we start with what are called the nutraceutical categories because those tend to have good benefit even though there are small studies, the studies are hard to do and you see this stuff does have a melatonin studies that are ongoing, but generally we think of them as having lower side effects. So what options could you use in the teenage population or even, you know, over age six or so. So melatonin three mg. Nightly, I'll start one mg for a younger kid, Less than 35 kg riboflavin, 200 mg twice a day. I put an asterisk next to this one because riboflavin is commonly used, it can be hard to get from pharmacies. It's cheap over the counter, but just hard to find. So often people have to go online to find it and it's really only available in a capsule form. So I put this next to a penny so you can see a lot of your younger patients, you know younger than 13 or so may not be able to swallow a pill or capsule unless you get the Children's Migra leaf form, which is chewable and contains both riboflavin, magnesium and Feverfew. Um but my relief can be quite expensive. It's something on the order of $20 or $30 a bottle compared to riboflavin which is closer to $5 a bottle, magnesium nightly. I get a lot of questions about what kind of magnesium and it's probably more related to what your patient can tolerate. So milk of magnesium of course being something to really clear out the bowels. I don't recommend that, but a magnesium chew or a tablet is fine as long as it has a sufficient dose and then I just counsel patients that you know if you are seeing too much softening or loosening of your stools even back up on the dose or try something different. I wanted to touch on sleep changes, which are really common. So as many of our teenagers have baseline sleep problems. This was a patient who I saw that was having even more sleep problems after their brain injury. Going to bed at two am waking up at seven AM and very common for a lot of our patients. Used to take melatonin but wasn't really helpful for him. So sleep changes are just really common. It's useful to talk to families about it. Insomnia being the most common problem in the months post injury. I don't often need to do a lot of diagnostic studies. But if I'm worried about periodic limb movements of sleep or wrestles like syndrome I'll send iron studies in endocrine screen thinking about thyroid changes. Um If I'm concerned for them or a sleep study often you can just have unmasking of sleep apnea or more longstanding sleep issues and management. Usually a lot of behavioral modification which I know we have limited time for. Um And then we can think about our nutraceuticals Again whether melatonin or magnesium memory complaints are a big issue for especially the teenage population. And this was a 14 year old twin that I saw for behavior and attention changes after a moderate T. V. I. A few months ago he was having new irritability memory problems. Sleep changes poor appetite as well as new substance use which was really distressing for her for his family and he was not in school and his brother had A. D. H. D. And I just wanted to share sort of the pearls that I've developed from my approach to these post traumatic cognitive changes. So I always think about pre morbid challenges. So how is school going before the Tv. I I often think about distracters. So how is pain control, how it sleep? Those are really essential pieces. The mini mental status exam like some of us may have learned in our adult neurology training is not so great in kids. It's really developed to detect adult dementia. So the practical approach that I generally take is thinking about intelligence both from my interaction from school performance from how the patient is doing as far as their independent activities of daily living that are age appropriate. I think about mood. So using our routine screeners thinking about a patient who is internally distracted maybe not hearing or able to learn new information. And then I think about the Vanderbilt screener as being a really useful tool of the screen for a PhD. And in this case I just wanted to give a plug for cap which I know many of our clinics are enrolled in. Um I know often we don't have time to call cap. And as neurologists were actually not supposed to consult cap but I was able to work in this case with the pediatrician we were able to do screeners for this patient ultimately was diagnosed with A. D. H. D. Like his brother had had he just hadn't had the pre injury diagnosis of A. D. H. D. Um And we initiated by advance to avoid the appetite suppression given how much nausea and weight loss he was experiencing post injury. So as far as an additional point setting families up for success, we've talked about symptom validation management. I just wanted to touch on the role of testing because often we get questions about um you know, does this patient need another M. R. E. They've had brain injury a year or a concussion or prior would have follow up M. R. I. Scan help and certainly in the acute setting the type of imaging really matters. Um And so I wanted to put this useful educational series up here of a head ct where you can see which is often obtained in the acute trauma setting appropriately. It's very fast. You can see this tiny little ditzel of blood A. T. Two which usually we think of as looking for pathology actually doesn't show that much on this scan. But here really the pathology after trauma is revealed on an S. Wi so an iron sensitive or blood sensitive sequence where you can see scattered diffused bridges which are like most likely consistent with diffuse axonal injury. And in studies and especially for our concussion patients, I'm hoping that the future will look at diffusion tensor imaging where we can actually understand how are the connections between neurons disruptive but D. T. I. Imaging and this sort of advanced M. R. I. Imaging really isn't applicable for our clinical population at this time. But in general and the literature shows us two, there's not really a lot of utility for repeat M. R. I. Imaging really. I follow these patients if they develop new symptoms so that they have new headache. Red flags a patient with a history of Tv. I can develop a brain tumor just like anybody else can. I mean they have new seizures that don't fit with their known areas of injury or in the sort of more sub acute period a couple of months after injury. If I'm thinking about hydrocephalus, which would again fall into the sort of red flag category with morning headaches, positional headaches, vomiting, things like that. But often the family is requesting and that can be an important part over time to work with the family. Generally you'll just see atrophy or encephalomyelitis asia of those areas that have been injured over time. It doesn't necessarily mean worsening of symptoms, but it's just evolution as the as the tissue dies. I wanted to touch on neuroscience testing because we get a lot of questions about that. It's used very variably. Um at some hospitals, everyone gets it before discharge here. It's more commonly done 6 to 12 months post injury. Um it's a myth that if you have medical, you can't get your aside testing. You absolutely can for medical diagnoses like for moderate to severe brain injury. It just has a wait period associated with with it and then concussion or post concussion symptoms is generally not an eligible criteria for neuroscience testing. And a challenge I face is that the school doesn't have to take testing into account, but it can really help physicians and family understand the diagnosis and treatment strategies. So I wanted to just end on a thought. I've had just thinking about how we transfer value from the clinic to the school and I hope I showed you all the things we can do in the clinic, but how it's not helpful if it just stays in the clinic itself and I feel really motivated by the work of porter and ties work out of Harvard business school. Thinking about value based care. How do we align care across instances of care? So our outpatients are in patients and vice versa and how do we align value across settings of care. So how do I take care of a student really who's in my clinic today and a real challenge I come up with every time is I don't have time to do care coordination and that's what I feel like all the time. So I spend a lot of my time thinking about clinician extenders and this is something that hopefully in the coming years I'll be able to return and talk to you guys more about what we're working on, but we're thinking about online platforms to help augment mental health supports. We think a lot about increased speech stopping. We know we need more speech therapists, an outpatient clinic. Um This summer we've had our first student working with an educational therapist as part of a training program at Holy Names University. So excited to think about that. Um Maybe developing educational liaison or a community health worker program with our school or other systems here in the hospital. So really thinking a lot about that. Um And we did launch, we are launching a parent support group via the parent training information network which will launch in september for patients with brain injury which hasn't previously existed. So I'll share that Q. R. Code at the end if you have families that would benefit from that. Um And I did want to include two dot freezes that you're welcome to use for me. They both start with bread. So the name of our program, B. R. E. D. And then I. P. Letter. And community resources. Just having the I. P. Letter starting to think about the process of what disabilities could be present. The educational setting has been shown to make it more likely that the family is able to get appropriate resources. So returning to our original case to end on a high note um He's finishing up his first semester studying studying auto mechanics in junior college. We were able to redirect him from the emphasis that a lot of our patients have just to get back to driving to focus on school and using a bike for transportation and using public transportation. A really important pearl that I've learned is driving as a red herring really. You want to focus on your independent activities of daily living your school. And then the driving piece follows that and that's really what the occupational therapist who's doing the driving evil if they do that do that we'll be looking for. So looking for those improved independent activities showing markers of cognitive recovery and executive functioning. And we were able to create a care team around him involving his pediatrician, his psychiatrist and were able to provide appropriate documentation for college accommodations and S. S. I. So just to briefly recap referral options and I hope I haven't muddied the water further but sort of thinking about this as mild, moderate severe, so milder for your sports concussion program, shorter duration of symptoms generally if it's sport related or return to sport clearance. Our new program, the bread clinic for patients with more mild complicated so positive imaging to moderate T. B. I. And right now we have neurology neuropsychology and neurosurgery in the clinic but to refer all you need to do is place the neurology referral and put bread in the comments. Um And I don't have a time limit from injuries. So even if your patient had an injury a long time ago, we're happy to see them. N. A. T. I would say non accidental trauma, slightly separate category. I'm always help weigh in on those patients. Um But I do actually think we have a neurologist coming on staff next year who's really interested in N. A. T. So stay tuned for maybe more even more appropriate follow up for those patients um and then referral to rehab always appropriate for your severe TBI I especially if there are a lot of motor deficits present. We do also have an 18 plus adult recovery program at U. C. S. Stuff which I'm happy to answer questions about. Um So you can refer patients to adult neurology for that. Um have a lower threshold to treat for symptoms if they have those post concussive persistent symptoms, risk factors and I think you already do this but don't promise an M. R. I. On our site testing because it may not be really what the family needs. I'd love to be in touch with anybody who's interested in the hospital. School communication. I think especially from the enterprise perspective trying to make an argument for having more educators on our staff would be really beneficial if more clinicians get together and say this is a really important need. So I'll include my email address um at the end. Um and then here's the QR code but I just wanted to briefly flash my references so they'll be uploaded to the dropbox for you to bring her back to and really end by thanking. Um, so many volunteers on our red team have been really helpful to collect data. Um, key faculty and staff I really want to thank, especially the rehab program here at Children's Oakland. My and you may have been essential Rebecca from the neurosurgery program and Rebecca from speech as well as Casey from physical therapy, Nicole and gina from neuropsychology and Lauren Williams in the trauma program. Everyone has been really supportive and willing to try something new and I'll leave up here my email. And then this is the grand rounds evaluation form this QR code and then the one on the right is the new family support group that we're starting in september if you have any families that would benefit. Great. That was an amazing talk. Um Bethany we have some great questions. So we have like about a minute. I'll try to ask a couple. Um, so this is from jolly Niyazi who's one of our community pediatricians, um, given the emotional processing effects, T. B. I. Recovery and the inequities in our society, some affected by systemic racism um, with the pre injury and post injury affecting an individual scare. Um, are there any cultural or social markers that are collected in your studies and just kind of talking about whether you're keeping track of that data. That's a great question. I'd love to talk more offline. We're not doing anything right about that right now. It was a big lift in the first couple of months just to do quality of life and I'm still not really sure what to do with this information. Right? Whenever you're thinking about a research study. So that's a great thought for consideration. I think I'll think about that awesome. And then from Natalie's Ivanovich, thanks for an excellent presentation and your work in establishing this clinic. Um At what point post trauma would you consider starting nutraceuticals like melatonin and etcetera? Yeah. I think there's very little harm to start them very quickly. And sometimes like when we're consulted for post traumatic headache in the hospital, well we'll start them acutely because there's not a lot of downside. I mean we use melatonin all the time in the population so I think it's very reasonable to start them early. I think if the question is like, what's my threshold to start it? Um I would say yeah, there are a lot of those uh personal or family risk factors or if you're having a lot of symptoms in the hospital because we can always stop it as an outpatient and generally those don't need to be tapered off great. Um and then the last one I think we can squeeze in. Um Do you think the volume of referrals thus far to the bread clinic is lower than the need in the community. Absolutely. Yeah. We receive about 4 to 6 referrals a month and we know epidemiologically that we have 10 admissions per month. Some of those don't get referred because they have Kaiser. Of course we have no insurance limits on our clinic but we can't see Kaiser because of you know regulations there. Um But we're also probably not capturing those who are maybe seen in other hospital systems. So patient doesn't have to be hospitalized to Children's Oakland to meet criteria for a referral to our program. Got it. Um Great well um I think that's all the time we have for questions. Um Bethenny has left her email here, so if you have any more questions um Sure she's happy to answer them over email. Um And thank you so much for joining us. This is a really amazing talk. Thanks everyone have a good day. All right.
