Jeff Waugh: Paediatrics FND Current Topics

This week our guest is Dr. Jeff Waugh. Dr. Waugh is an Associate Professor of Pediatrics and Neuroscience at the University of Texas, Southwestern, in Dallas. He founded and directs the Pediatric Movement Disorders Program and founded and co-directs the Pediatric Functional Neurological Disorders Clinic. His research centers on neuropsychiatric disorders of the striatum, a brain area that sorts and regulates input from every part of the human cortex. His lab studies the interacting and competing functions of two sub-compartments of the striatum, the striosome and matrix, and how imbalances between the compartments contribute to human diseases. His research articles, case series, reviews, chapters, and editorials have been cited by peers more than 1500 times.

In this episode, Dr. Waugh and I discuss elements specific to pediatric FND including the role of the family and treatment models, a survey of pediatric providers regarding FND documentation, communication, and experiences, the role of medical systems in supporting good communication and provider / patient experience, and lastly FND and the gender spectrum. It was a great discussion about brilliant work, and a very enjoyable conversation.  

Relevant Articles: 

When neurologists diagnose functional neurological disorder, why don’t they code for it?: https://pubmed.ncbi.nlm.nih.gov/34521502/

Functional Neurologic Disorder Among Sexual and Gender Minority People:https://pubmed.ncbi.nlm.nih.gov/37775203/

Lastly, we invite providers to participate in a brief survey examining driving recommendations for patients with functional seizures. Developed by a dedicated study group, this survey seeks to capture the current opinions of physicians worldwide on this topic. Please take a moment to share your expertise:  https://survey.alchemer.com/s3/8065625/functional-dissociative-seizures-and-driving

Transcript

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SPEAKER_01 0:03

Thank you for listening to the FD Society Podcast. I'm your host, Erica Cotton, coming to you from Chicago. I have an excellent team, including Michael Romeo, our sound and production engineer, coming to us from Australia, and our content curators, Ingrid Huritzauer from the UK, and Chris Mapretorius from South Africa. We also thank Megan and Rumbert for all their administrative support. This week, our guest is Dr. Jeff Watt. Dr. Waugh is an associate professor of pediatrics and neurosciences at the University of Texas Southwestern in Dallas. He founded and directs the Pediatric Movement Disorders Program, and founded and co-directs the Pediatric Functional Neurologic Disorders Clinic. His research centers on the neuropsychiatric disorders of the striatum, a brain area that sorts and regulates input from every part of the human cortex. His lab studies the interacting and competing functions of the two subcomponents of the striatum, the striosome and matrix, and how imbalances between these compartments contributes to human diseases. His research articles, case series, reviews, chapters, and editorials have been cited by peers more than 1,500 times. In this episode, Dr. Wall and I discussed the elements specific to pediatric F ⁇ D, including the role of the family and treatment models, a survey that he completed of pediatric providers regarding F ⁇ D documentation, communication, and experiences, the role of the medical system in supporting good communication and provider-patient experience, and lastly, F and D in the gender spectrum. It was a great discussion about brilliant work and a very enjoyable conversation. Thanks so much, Dr. Waugh, for joining me today. It's a pleasure to have you here. So, in order to get started, why don't you introduce our listeners to the world of pediatric FND briefly? We're kind of kicking off a bit of a pediatric focus here. And if you could summarize a bit about pediatric F and D diagnosis, outpatient assessments, typical pediatric treatments, especially as it relates to functional movements, I think our listeners would really appreciate that.

SPEAKER_00 2:04

Great. Well, thank you so much for having me. I'm excited that the world of neurology and neuroscience is getting more and more interested in FD. And, you know, I think this can only help our patients. So it's a great time to be in the field of F ⁇ D. The the whenever I hear someone say uh that pediatric FD is a rare disorder, uh, I have to wonder which hospital they're working in. Because every hospital I've ever worked in, uh, F and D has been one of our most common diagnoses. We we see it every week on clinical service. Uh, almost every uh day in a general neurology clinic, you're seeing these patients. So this is a large enough population that if it were a kind of epilepsy, if it were a kind of muscular dystrophy, we would have specialty clinics for that. So this is uh the reason why we started uh a pediatric F and D multidisciplinary clinic eight years ago at UT Southwestern. I've got a fantastic partner uh who's a neuropsychologist. Uh we started it uh uh together and we've seen every patient together now for eight and a half years. So uh I think that that's something that's been a core of our success is that we've really had uh from the beginning this mindset of uh we need to meet the patient where they are and understand their neuropsychological background uh as part of our diagnoses. Uh we in this clinic we uh have had uh days where every patient referred to us turned out to not have FD. Uh so I think that's an important uh uh thought, too, that uh people who are not used to assessing F and D do get it wrong sometimes. And we as FD providers need to be uh ready to say no as well as to say yes uh when a patient uh is referred to us. Uh the key things I think to making the diagnosis uh of pediatric FND uh are a careful examination. Uh that it's it is almost always uh the case that the physical exam of a person who has a functional movement disorder uh is quantifiably different than a person who has the organic equivalent of that movement disorder. Uh functional ticks look and sound and feel different than Tourette syndrome. Uh functional dystonias look and sound and feel different than organic dystonias. And that's true for functional seizures, uh, functional cognitive disorders as well. So uh a good F and D diagnosis should always start with careful examination and a deep history.

SPEAKER_01 4:27

Wonderful. Um, in terms of treatments, you know, in the adult world, which my listeners should know I'm an adult provider at this point, um we do PT, OT, speech, psychology, psychiatry as indicated after a consistent neurologic diagnosis, right? Once the diagnosis is confirmed, then we move into this round of treatment or this realm of treatments, um, especially multidisciplinary for FMD and usually a little more behavioral health focused for functional seizures. Does that, is that mirrored in the pediatric population or are there distinct differences that our listeners should be aware of?

SPEAKER_00 5:02

The availability uh is going to be different in adult providers and pediatric, of course. So we have a hard time uh finding uh resources for people to do inpatient treatment, for example. Uh but when uh when we have those at our disposal, we use the same things that our adult colleagues would use. So all of the uh modalities that you listed are important ones for us. The the big advantage I think we have in pediatrics is the the allyship with with parents, uh that if we're able to uh to to win the uh opinion of the parent, uh we've got uh the the best fighter for this child's recovery. Uh and and I think that that may be a part of the reason why a pediatric FD tends to recover better than adult FD.

SPEAKER_01 5:46

Great. That's that's wonderful to hear. It's it's reminding me of our multicultural podcast where it across different regions and different countries, it was the everyone preferred the same model, but access and availability at certain parts was different or limited based on how insurances were set up, providers' availability, et cetera. So it sounds like it's actually very similar across adults and PES, even within the US here. Um you mentioned, I can't help myself, um, you mentioned one component when you were discussing the diagnosis of functional cognitive symptoms. And it's a neuropsychologist in adult land. I'm very interested in functional cognitive. And I've often wondered about the presentation of functional cognitive symptoms in pediatric patients. Some of my adult patients go, I don't, I don't, I don't, or my pediatric colleagues go, I don't, I don't think they have functional cognitive symptoms, or I haven't heard that as a primary. But you mentioned functional cognitive. So I'm gonna, I'm going to to ask, do you believe functional cognitive symptoms exist in pediatric populations? How often do you see it? Are there differences?

SPEAKER_00 6:45

So we see it probably uh once every two or three clinic days. Uh someone will have a functional cognitive complaint. Every once in a while, that's the primary functional symptom, but very often that's just an add-on symptom. Um, so uh the the things that help us to to distinguish a functional cognitive symptom uh from uh uh from from other types of cognitive uh symptoms um are the same as the physical exam. So the nature of the complaint itself is is key to making the diagnosis. So a person who has uh functional memory loss uh will very commonly, a child who who has this will very commonly say, I can't remember anything. I can't do homework because I can't remember. Uh and here are the 14 examples of of how my memory was off. Uh on Thursday at 2 p.m., I couldn't remember the name of the third actor in this such and such a movie. So there's just a big disconnect there between the the ways that that manifests in the person's life and true, uh, I shouldn't say true, I'm sorry, uh, an organically based uh cognitive complaint. Um another thing we do to confirm that though, uh is effort testing. Uh so my my neuropsychological colleague uh will ask patients to perform tests that uh are are really easy for a person of normal intelligence and developmental level. Uh and if they if they struggle more than uh than a person of their uh uh intellect should, uh that's one of the ways that that the effort-based testing can can tell us that this is perhaps a functional cognitive complaint.

SPEAKER_01 8:16

I see. Okay. Um yeah, FCD and in performance validity measures could be its own its own podcast. And some of my colleagues would very much encourage we might we might bring you back for that panel um in the future.

SPEAKER_00 8:29

And I've been I've been hard uh a part of um uh lively discussions uh about that. And and this is another area where I think perhaps there's a difference of opinion between adult colleagues and pediatric providers that on the pediatric side we we have generally, I can't speak for the entire group of us, but in in general, uh we have found these to be measures that reflect our our clinical reality. Uh and and so there's a lot of just uh face validity uh to what we're measuring. Uh but I I respect the the folks who have made arguments uh on the other side of that about being cautious about uh validity testing uh in adult populations.

SPEAKER_01 9:09

Yeah, it's it, oh it we we are going to we'll circle back and probably have you as a future guest in panel discussions because that that scenario ripe, especially for functional cognitive symptoms. Um in terms of functional cognitive treatments, I guess we can have a whole different discussion about available functional cognitive treatments in pediatric populations and if the diagnostic criteria would have the same ball at all criteria that Harriet did would apply to pediatric patients. But I'm thrilled to hear this recognition and awareness. I think it's probably similar in in pediatrics right now. There's there's like 80% of people with FND have cognitive complaints, but for a subset, it is the primary, it is the presenting thing that is debilitating. So I'm really glad to hear that this is being recognized, especially within your clinic, and seems like an area ripe for continued, similar to FCD in general, within I think F and D is And you brought up FND, FCD specific treatment.

SPEAKER_00 10:05

We we generally haven't found that in pediatric FND we have to have an add-on FCD treatment. Uh it's rather been the case that if we do general FND treatment and if they need it, you know, physical rehab, et cetera, um, that that that also takes care of the F FCD. Uh we we have not found that someone needed specific FCD treatment.

SPEAKER_01 10:25

Oh, that's wonderful. And that that might be a difference between pediatric and adults with FCD as well. We've kind of had the somewhat an opposite. I I think in general, FND treatment helps FCD, but some FCD-specific complaints, especially if those are more primary or dense, then do benefit from in targeting those symptoms, those symptoms explicitly in ways that you know that PT wouldn't don't target, right? Or or speech might not necessarily target. Um great. Well, I'm just so pleased to hear that um in such a comprehensive consideration. Great, great span of FND consideration in your clinic and within your practice. Um I want to be mindful of our time and get into a few major areas where I think you and your team have contributed substantially to our understanding of FND and important sort of central issues that are timely in in regards to FD right now, which first one being diagnostic codes, stigma around FND, stigma around coding for FND. And granted, this this is in the pediatric population, um, but I feel like a lot of your findings would equally apply in in an adult setting, even though I think the parallel studies haven't been executed. But if if you could walk our listeners through the research that you and your team completed that was mixed method looking at both retrospective chart review and a survey of pediatric providers, and then looking at that data comparison to pediatric diagnostic coding of FND and what some of those mean findings were. And it was just, I think, very impactful work if listener will include a link in the show notes for each of those articles.

SPEAKER_00 12:07

Thank you. I was that was a fun paper to do. So I appreciate your bringing it up. So uh our I'm gonna give a uh an asterisk from the beginning that anybody whose mind uh has already glazed over at the word uh at coding and and and billing documentation stuff, don't worry, that's not really what this paper is about. Um this paper is about communication uh because we found in our pediatric FND clinic that referral notes would very frequently uh hint to us that the person, that the physician knew that the child had FND, but they would never tell the family that. So, for example, we'd see in the physical exam that the patient had Asthasia Abasia, but then we'd ask the patient, look, the note says here Astasia Abasia, and we're telling you this means FND or conversion disorder or psychogenic, et cetera. And the family will never have heard those terms before. So we wanted to try to get an idea of how often physicians truly communicate the diagnosis when they know it. And of course, an IRB is never going to let us hide secret cameras uh in exam rooms. So we're never going to get uh a true true accounting of people's communication of the F and E diagnosis. But we thought, look, if a person can't even talk about the diagnosis, can they communicate it electronically through the medical record? Would we find that same deficiency of communication in coding that we that we saw uh uh in our own referral notes? So what we did was twofold. We looked at our own uh practice uh of all inpatient consults for three years. And then a fantastic uh medical student, Rachel Kim, now an ER physician, uh, she uh went through each note and uh and and searched for words like functional aesthasia basia, functional seizures, et cetera, uh, and and identified notes that were uh high probability for the physician knowing that this was an F and D diagnosis. Uh we then uh I went back and looked at each of those and confirmed, yes, this this physician is saying that this is F and D. And then we just looked at the at the diagnostic codes that they assigned at the end of that consultation and and asked, uh, you know, did they code for it? Uh did they uh did they code for the specific variants of F and D or did they use use broader codes? Uh and we found that even when physicians know that it's FD, when they've put their their their money where their mouth is, written F and D in their note, they only code for it 22% of the time. So any study that's trying to look at the cost of F and D, the prevalence of F and D, the outcomes of F and D that's based on ICD 10 codes is going to miss up to 80% of the impact. So, for example, Chris Stevens' paper from three years ago that uh found uh that the cost of FND care in the United States are billions of dollars per year, it's likely that those costs are inflated by four to five fold due to this undercoding problem.

SPEAKER_01 15:04

Those were two two two components of of those findings really struck me from this publication. The one being, as you said, I I previously did a cost utilization in neurose. So I understand the glazing over of certain ears, although I found it very enjoyable and very very important. We were trying to answer another important clinical question, but two um findings related to what you just highlighted is in a world, especially in the US, where so much reimbursement and utilization or um allocation of resources is ICD 10 coding specific, what a gap that currently is, right? That does not exist, I think, with many other conditions. So why FND? Then the other metric along that discrepancy was the rate of providers' confidence in diagnosing FND, you know, which was something like upwards of 80 to 90 percent, and in their belief and confidence and their their belief that they were diagnosing it, right? But then contrast that with the 20, 20 or so percent that actually used a corresponding ICD 10 code that for our listeners who don't don't know ICD 10, I'm sure most of them will, but it's it's essentially uh an international coding system uh on an agreement, which signifies we're talking about this diagnosis and this this code signifies this diagnosis. Um and and both of those discrepancies being being marked in, including the provider's own belief about how how much they do diagnose it versus the actuality, which which is interesting. What do you think accounts for that level of that's it's not even cognitive dissonance, I guess it's just a agnosia on the provider's part of that discrepancy?

SPEAKER_00 16:55

I can I can answer that in two ways the the anecdotal uh and what the data from our paper uh shows. So anecdotally, I have heard for my entire career, uh, oh, if you code it as FND, you'll never get paid for it. Or uh you can't use those codes, those are psychiatry codes, and we have to use neurology codes. So I I have heard that from the attending physicians who trained me, from my colleagues, from people at conferences after my own F and D lectures, etc. So uh we did a uh a second look at uh at all of the the consults that were performed in our hospital for three years, but this year, this time, not looking just at our own neurology uh visits, but at everybody in the hospital who was not a psychiatrist and just asked, if someone uses the FND specific codes, do they get paid? And the answer is that they always got paid. I mean, sure, there were times when physicians didn't finish their note on time or like they didn't send it to the right insurer. Like, yes, there are a few times it didn't get paid. When the physicians r did the process correctly, it was paid every single time. There's no such thing as a psychiatry-specific code, a neurology-specific code. Every diagnostic code in the book is available for every care provider to use. So it's not at all the case that someone is restricted uh to one discipline for their diagnostic codes. Even if that were the case, practically speaking, you're getting paid. If you do, if you write your note correctly, you're you're gonna get paid for these.

SPEAKER_01 18:30

Great. That's that's a I think a wonderful um uh cognitive distortion too correct for for our providers or an incorrect assumption in encouraging that diagnosis. One other component that your work highlighted was another possible reason for not diagnosing and not communicating the diagnosis. And I think it's very bold, bold's not the right word, brave but inspiring that you considered to discuss these harder, harder components. And this this component being it didn't always go well in when they made that diagnosis. And I applaud you and your team for including this because I think providers um have neglected to discuss it openly, and I think patients are very much impacted, and I think we hear it all the time from patients, and there's this big gap in how providers and patients are discussing this fairly common phenomenon of providers, especially in your cohort, a neurologist, a pediatric neurologist making the diagnosis and having a communication breakdown, a breakdown in receiving the diagnosis, appreciating the diagnosis, or even agreeing with the diagnosis that can result in negative experiences for the provider, but especially as has been well documented in the literature, patients and in terms of stigma, et cetera. And I want, I would love for you to share your views and opinions about this finding, why you looked at this finding and what your interpretation of your findings were as it relates to this common communication breakdown, with a full applause from me and all my team here for even engaging in this conversation.

SPEAKER_00 20:16

Uh I I appreciate that, Erica. Thank you for highlighting that part. I really think that that's an important part of how we as a field can do better and and really need to do better is in the area of learning how to communicate well. Uh there are uh there are many conversations that we are are are explicitly taught how to do in in medical school. Uh the the uh you know, your family member is going to die conversation. The, you know, this is a terrible diagnosis, it will uh end in your demise conversation. We we practice those uh explicitly. Um most of us were never taught explicitly how to have an FD conversation. And it should therefore not surprise us that we don't do it well. Uh, and thinking back about the conversations that I saw modeled when I was a medical student and resident, um, the attending physicians that I saw as you know, confident, uh compassionate people who would bend over backwards to care for patients when they entered an FD room would become a less confident, oftentimes less compassionate version of themselves. And that's that's not a criticism I'm leveling, uh, that's rather uh an observation that this is hard and that it's something that if we are not training people to do well, of course, people are not going to do it well. And so we as a a group dedicated to improving care, one of the things I think we can do better is just teaching people how to have the conversation better. Uh and and you know, physicians committing to deciding to do better. Uh, you know, that this is an an area where Uh, if if we were getting something systematically wrong in uh our heart care and our GI care, if we missed something on an exam and wanted to go back and practice it, most of us would feel the pressure uh uh to get better at those things. And that's just not a pressure that we collectively have applied to doing better at FND. So that's the backdrop for why these conversations perhaps have not gone well. But when it doesn't go well, what do we do about it? And and how do we approach the the next patient who may have a similar presentation? One of the things that was striking uh in our in our survey study, where we we contacted pediatric neurologists from around the country and had them take a survey about uh uh about whether they would code or not and and and looked at um at uh scenarios and asked, you know, would you code in this circumstance, in that circumstance? We we had some free answer responses that we thought were just kind of a spillover, you know, in case your answer didn't fit into these categories. And it was it was very eye-opening how much people vented in that free response. We didn't expect that to be a place where we would get some important information, and boy, did we. Um, people told us terrible things that had happened to them as a result of making an FD diagnosis, losing jobs, uh, getting having to move cities, uh, being uh being told that they couldn't practice in a certain environment anymore because the conversation went so badly. So I understand why someone who's been through that would be wary of taking care of the next FD patient. And in fact, over 60% of our respondents described that sort of negative impact. So if those of us who are trying to educate the next generation uh and help our colleagues do better, if if we're not acknowledging the trauma that our colleagues have been through and helping them to get past that, then we're not going to be able to help them to do better for their FD patients because our physician colleagues have often been bruised by prior encounters. And we have to proactively help them to get past that to help the next patient.

SPEAKER_01 24:19

I'm I'm so appreciative of you highlighting this complex intersection of diagnosis, diagnostic knowledge, provider communication, patient reception of these components. And I think it's erroneous to, and I recognize it full full kind of caveat to our listeners here. We are touching on potentially deeply triggering and or can conflicted areas for debate about how to manage this and what's the cause of this, and at a risk of of seeming perhaps too inclusive, but I don't I think it's probably oversimplification to say there's only stigma. It's only it's only the doctors or it's only the patients, right? I I think that's just a fundamental oversimplification. And I think if we looked at all of your the patients that you or the patients and provider interactions that that you picked up on in your survey highlighted, we could probably find components of each, right? Where it was total provider failure they have. Incorrect assumptions, outdated beliefs, and they communicated it poorly and without confidence. And that led to sort of righteous anger on the part of the patient in receiving that diagnosis and an appropriate reaction of consequences for that provider to the other extreme of very well-educated, very good provider who made an accurate diagnosis and provided it in a compassionate, thoughtful way. And patient for a variety of reasons was not able to hear that. And what is all contributing to those in terms of societal beliefs, expectations, personal histories from both providers and patients? And then I think you also really highlighted an important element. There's a marked sentence in in your in this paper that I really appreciated, which was, you know, a system essentially that that creates poor communication experiences is a failure of a system, right? And that in FND uniquely, there's a lack of systems to support good communication, where there's documented high rates of poor communication or difficult communication versus other conditions that are notoriously hard. Like you said, if you have to have a conversation, palliative care, how much support goes into palliative care conversations, palliative care discussions for providers and family versus the and the level of resources, even from a psychiatric perspective, right? Patients with high psychiatric comorbidity, where they we know there's going to be interactive complexity as a provider, not because the patients are at fault, but because they have illnesses. There's high levels of systemic support, addictions, personality disorders, et cetera, where the level of systemic support, provider support, patient support outlets to ensure the most effective communication occurs and their safeguards for both sides of that equation. We're really lacking that in FND, despite the complexity and clear documentation. And I appreciate this article for quantifying that. I think it's been an anecdotal experience of many patients and providers. And, you know, as a provider, I think I've experienced the whole spectrum. I think a few patient interactions have captured it very well, where you know, some patients come in and you know, some sit down and say, I wasn't told anything. And I see similar notes where like the provider kind of documented it and they say maybe they described it, but I'm like, did they really communicate that? I don't know if they did. You know, I'm not a hundred percent confident that they really actually did communicate it to the patient. And then we sit down and talk about it, and then they have buy-in and et cetera, versus other people who come in and they're they're skeptical, you know, and they're they're a little guarded with me. And and I think they've experienced systemic trauma from multiple providers. And some people have the insight to even say, look, you're you're believing me. I'm not used to being believed. Like I've had so many providers tell me that I'm, you know, faking it or whatever. And I just forgive me if I don't trust providers, but I hear that you you're trying to help me, right?

SPEAKER_00 28:43

And and so I I think you you raised a really important issue, which is just pragmatically, how do how do we make this better for physicians, for care providers, and for patients? And uh in my opinion, proactively unburdening is a big part of that. Uh, that most people who have been through the system, seen a lot of ER physicians, seen some previous neurologists, even, most of those physicians have heard the phrases you used. It's all in your head, you're faking it, you need to just, you know, get out of this funk and get back to life. Some version of those most people have heard. And so we will usually start the visit by saying, many people who come to this clinic have heard this message and this message and this message. And I just want you to know that that's not how we do things here. Uh, and and that really starts off not only with with just a better, uh, a better interpersonal interaction, but uh honestly a faster, a more productive interaction. We get through more more territory because we're not fighting about every inch of ground. So I find that to just be a pragmatic way uh to get to the meat of the conversation faster. Another thing that I think is really important for those who are thinking about expanding their FD care or maybe setting up an FD-specific clinic is this issue of time. Uh, that patients who have FD often take more time than someone else who has a similar type of symptom. And if I didn't have a supportive uh hospital administration that let me be flexible, um, I would have a much harder time. But I've I have been able to uh have patients in rooms for hours at a time uh because uh the hospital allows me to basically expand into a block of rooms instead of just having one or two. So our longest single-day visit uh was seven and a half hours uh for one patient. Uh and I wasn't in the room that with that patient for seven and a half hours, but we would come in and out and we would find a new problem. We'd have to come back in and come back in, et cetera. So that's something that uh uh I can capture the complexity of that extra time using diagnostic codes uh that allow me to use all my time essentially. And if I wasn't doing that, then I would have at the end of the day a far, far lower RVU uh count than if I would, you know, if I was just billing by sort of the consult itself. Uh so knowing how to use time-based diagnosis codes uh and CPT codes is is actually a really important part in being successful in an FD practice that you've got to account for all your time, because these patients are gonna take a lot of time.

SPEAKER_01 31:24

Yeah, I think that's an excellent point. And I'm hearing a follow-up paper, a follow-up sort of how to run an FND clinic where these complexities along the billing component and these systemic supports are in place, because I think a fair number of my colleagues say, I don't have the time. I can't bill for those. They don't know how. They don't know that they can bill for longer encounters. And then they have to have a, as you identified, a system, their system, their their departmental admin, their departmental sort of people who look at their RVU targets say, well, why did you spend so much time where we're protecting your time or we're giving you extra rooms and that those expectations for this population are different than 15-minute return slots or a 30-minute evaluation slot that's so standard across most medical settings. And that requires a lot of systemic support and a lot of systemic conversations. I think the other piece that that's come up or has been, I think, divergent across a lot of practice settings is also not just on the structure of the visit and time given to the patient and ability to sit down and have those conversations that are destigmatizing and really getting into all those components and really develop a comprehensive patient approach is also on the provider end of having some degree of systemic protection for poor patient encounters, right? Where it's not going to result in job loss if a commun, if a diagnosis was communicated compassionately and effectively and due to a variety of reasons wasn't received well, right? Or if the interaction was poor due to a factor completely unrelated to FND, right? Someone's use of expletives about a provider is not going to be associated with that. That's not an FND problem, right? That's right, that's a different set of problems that providers can experience and having appropriate supports in place for that for the provider to then be willing. I think that would really lower lower the barrier. I think there's a barrier with providers to engaging with FND patients due to the these fears. Well, it's gonna go poorly for me, or I'm I'm gonna be the one with my my star ratings on Google, you know, going through, you know, getting tanked and versus feeling like there there are supports in in place and that systems are allowing providers to engage with this patient population. And I think it's it's both evolving. How we're communicating with patients and how systems are developing to support these patients are evolving at the same time. And that's that's a hard, that's a hard thing to do. It's it's a lot to ask of, it's a huge amount to ask of patients, right? Hey, come see us. We don't have it all figured out yet, and systems aren't really fully in place, but you know, we're working on it. But also for providers.

SPEAKER_00 34:16

Well, I think that that's that is exactly where we were with multiple sclerosis 25 years ago. That's where we were with Guillain Beret 25 years ago. So we are starting to figure out some of the neuroscience behind FD in the way that our colleagues did a generation ago. That doesn't mean that 25 years ago, physicians weren't providing uh capable and competent care for MS and Guillain Beret. So this is an area where you know we we we will meet our physicians where we are today and we'll commit to getting better over time. Uh, but that that's something that I also try to be proactive in telling our patients about. Here's the latest research and how we know that this is a brain-based disorder. Uh, here's how you know we have gotten better in the last five years uh and and where we need to go from here. Uh patients, in my experience, like to hear about that. Uh, and and getting into some of the science, of course, helps to build trust uh that you're a physician who knows this disorder and knows the diagnosis well. Uh so that that has only ever helped uh in in my interactions with patients. So I if if uh if if folks you know want to try that, you know, learn a few papers well, uh, be able to talk about those in your in your elevator, elevator pitch sort of way. Uh it goes a long way with patients.

SPEAKER_01 35:37

Yeah, I I it it definitely does. And I think it also helps providers' confidence or providers' acceptance who who might otherwise not have been educated in FND or not have been told very outdated beliefs to hear, oh wait, there is there is a science behind this. These these patients aren't just quote unquote faking it. So this again, I just applaud your team for for broaching these complex and difficult and evolving um practice landscape areas and opportunities for improvement of patient care and provider structure and approach. To create further complexity, let's talk about another complex patient population with FND.

SPEAKER_00 36:17

I know where you're going.

SPEAKER_01 36:18

Yes, exactly. Which is especially in pediatric populations, the role and overlap of gender diversity and FND and how that adds to patient complexity and then our patient understanding. And just as a preface preface for our listeners, prior to this, I to make sure I didn't put my foot in my mouth, I asked um Dr. Wah here if there were different base rates of um transgender proportions, male to female, female to male, um, non-binary across the pediatric landscape in FND. And I was I was told there there that is not clear and that there wasn't, um, which I think is helpful when when we're engaging in our discussions of just the limitations of our current understanding, but also if you're not aware, it's okay. Um, there's some there's some pretty still simplistic or or overarching themes despite not having some of these details be fully mapped out. So why don't you share with some of our listeners, especially your your case series, that that highlighted some of the complexities and common challenges of working with transgender individuals who also have FND?

SPEAKER_00 37:25

So this this is another uh project that came out of our clinical observations that we we found that we were just seeing more kids in the FND clinic who were on the gender spectrum than you would expect based on on the expected uh prevalence uh in the population. So uh the um we we just we saw a lot more kids than we than you would expect. So we started to uh collect them uh as you do with any sort of clinical case series uh and uh followed uh them longitudinally and and saw that most of them got better. Uh so uh which is which is often the case uh in in pediatric F and D, that they do get better. Um, but in these individuals who uh were in the midst of gender transition or who were exploring their gender identity uh and the family was not on board yet, um, we found that uh once they resolved that difficult phase, uh, that coincided with their F and D getting better. That's that's a far cry from saying uh that A caused B, uh, but uh but we did see a time association in this small case series. So we've actually followed that up now with uh a paper that is uh is about to be submitted. So, you know, big big caveat. This is not reviewed work yet, um, but this is uh uh a survey project of individuals worldwide uh who care for folks who have both F and D and uh who are on the gender spectrum. So neurologists, neuropsychologists, psychiatrists, gender-affirming care clinics, uh, and just asked questions about which started first, uh, the F and D or their gender identity. Um, was there a relationship between treatment for their gender dysphoria and their FD? And the big takeaway was that uh people who are on the gender spectrum need F and D-specific care, um, that getting F and D care was related uh to uh improvement in their F and D symptoms much more so than getting uh uh gender affirming care. So to be careful in how I say this, I want to make make clear uh if a physician feels that a person needs gender affirming care, then that's worth doing on its own. Um, but their F and D-specific care shouldn't be held up uh waiting for their gender care to get figured out. And it it also uh shouldn't uh hold up their gender care. So just because someone develops FND doesn't mean that their gender affirming care should be uh interrupted or put on hold. These two spheres are something that overlaps in the person, but the treatment actually can be going in parallel and and not interfere with each other.

SPEAKER_01 40:05

And I think that's a very important take-home is that FND care will not resolve gender issues, right? Gender affirming care will not resolve FND and treating both of those components as it makes sense for the patient at that time is essential in holistic patient care and patient consideration in in the pediatric population.

SPEAKER_00 40:28

Right. And and this is an area too where both FD and uh uh gender minority status are both things that increase the level of stigma that a patient is going to experience. So having both of those features in one person means that this person is almost certainly uh born a lot of stigma. Uh, and in in all areas of medicine, we find that stigma makes recovery harder, makes outcomes less good. So this is an especially vulnerable population that frankly just needs a little extra TLC. Um, so these are folks that maybe I'm just a little bit more gentle. Maybe I'm just spending a little bit more time because I know that these people need it.

SPEAKER_01 41:09

Yeah, I think that's such an important thing to highlight. One one component, I guess, that that's came to my mind as I was reviewing this case series, which which beautifully highlights, I think, the the different types of complexity that can be present or the different stages that people are at in FND care versus gender affirming care and how how those run in parallel and are synergistic in a lot of ways, was the role of family. And and that might be different for pediatrics across FND, but then especially in FND and transgender experience. And we see that in adults, right? Adults with lack of supportive environment, but it's not essential, right? For I shouldn't, I shouldn't speak for my patients in that way. Perhaps it it at least in terms of exposure, people with adults with FND who are transgendered might not need to still be living with their parents, but a pediatric patient who identifies as transgender does not have a choice about living within a family system that may or may not be supportive. And then that's often not an option for adult, a lot of adults with FND. But what's your team's approach to the family dynamics and what pearls can we as adult providers take about addressing dynamics for individuals who identify on the transgender spectrum with FND?

SPEAKER_00 42:29

So families uh have have by and large not had a chance to uh learn about, expand their minds about, get to know uh other uh transgender or gender diverse individuals before their own child comes to them and says, I think I'm trans. So most of the families we meet are learning on the job. Uh, they are figuring out themselves how to how to deal with this. And and I mean, I practice in Texas. This is a state that has made caring for transgender individuals uh punishable by loss of your license. So this is certainly an area that uh where it is harder to learn about the transgender uh supporting medicine than it might be in other locations. So families are often coming to us without the chance to have learned from best practices uh from other families. They're just trying to figure it on their own. So I think starting with compassion for the families and knowing that, like, gosh, you have had to come so far to even get to the level of support that you're giving now. So, how do I help you do the best job you can do to support your child? And that may not be getting to full uh embracing of the gender identity for every every family member. Uh, but but helping the family to see how uh conflict, anxiety, panic symptoms are also triggering for the person's F and D is a Way that we've been able to help the child's F and D just by getting the parent to maybe take a different approach to how they handle the transgender status. One thing that I often will share with parents too is that we've we've had quite a few patients who came to us with F and D who were on the gender spectrum, who in the long run decided that the sex assigned at birth did match their gender identity. They were just in this phase of figuring it out. And that that is a, I don't, I don't know what fraction of pediatric transgender uh children who are on the gender spectrum will end up uh kind of coming back to the place they started. Um, but it's non-zero. Uh and and in our clinics at least, a lot of folks do end up coming back to a position where where they are embracing uh the gender that they were assigned at birth. So just helping families to know that like the place we are in this moment is not the final spot, uh, is is is not where this is going to be forever. Um, here's how we can help you as you move through your understanding of this. These are all things that help their approach to the F and D as well.

SPEAKER_01 45:07

I I really appreciate taking that model of how families are embracing this component of their child interacts with the F and D component. And I I definitely hear the approach and think it it must be greatly appreciated by by family as well that it is, it could continue to be dynamic across that child's development and lifetime. Um, and and that's it, I don't know how unique that is. And I certainly know in the adult world for F and D studies and evaluations of rates of transgender or where people follow in the transgender spectrum and the stability of that diagnosis are less currently not studied in relation to F and D. But I would I I would agree with the hypothesis, especially that in children, given the age in which natural exploration starts to happen, there might be more variability of sort of coming full circle, going in in various directions, and not a lack of stability around gender identity than perhaps in the adult population. But I definitely know we don't, we haven't, we don't have those studies in the adult population yet as well. But I think those mirror important issues in adults who identify as transgender and also have FND. And I think there are very similar themes around patient family dynamics and connections and the role of that. Um I I've often encountered in adult populations that having an FND diagnosis, although not just for gender-affirming care. Yes, definitely for gender-affirming care, but various medical procedures. Well, they can't have, you know, the double massectomy they need because they're rock-positive and you know their mom has breast cancer, right? Because they have functional seizures. And it's like, wait, what? Like we're not going to give this person potentially life-saving preventative care that we would give to every other patient because they have a diagnosis of FND. This does not, this doesn't set up. Um, it's an excellent model.

SPEAKER_00 47:15

Well, that that brings up uh an example from the world of transgender medicine that is also true in in FND. Um, there's something called the transgender broken arm syndrome, which is, you know, a person who is trans goes to the emergency room because they've broken their arm and the ER physician says, Oh, it's because you're trans. That's just ludicrous, of course. But things like that happen all the time. That someone hangs on the hook of their transgender identity, whatever medical problem they have. That happens with F and D too. Like, oh, this new symptom is creeping up. It's probably your F and D. Well, maybe if it fits the exam and if it's not consistent with another diagnosis that better fits. Um, but we see that all the time, that people uh see, see a label and stop thinking. Uh, and that's that's one of the areas where I think people get get stuck in stuck in a diagnosis that no longer fits, or they they make a diagnostic mistake because they're not willing to update their priors uh and and see that, like, hey, the person in front of me today is not the same person as I saw six months ago.

SPEAKER_01 48:14

Right. And and having an FND diagnosis is not somehow neuroprotective. That means other neurologic conditions, seizures, strokes, et cetera, are not going to not going to occur. Right. I I agree that keeping that threshold. I appreciate your your comment and then the way you phrased it of populations, FND being being a stigmatized population, but then especially transgender individuals with FND are sort of doubly stigmatized and are at even greater risk for some of these errors of bias that result in mismanagement or care and taking extra time and extra care with this patient population, I think applies both to pediatrics and adults. But it's very useful models, I think, that your paper paper highlighted and outlined. Um wanting to be respectful of your time, but also just getting our listeners access to all this wonderful knowledge in your in your head. What would you say are future hopes or directions you you would like to see for the field of F and D and pediatrics or FND in general?

SPEAKER_00 49:20

So I I spend most of my time directing a lab uh using MRI to understand uh the way the brain works abnormally in disorders uh uh that affect the striatum. Uh and and that part of the brain is involved in many movement disorders, but also in psychiatric disorders, behavioral disorders, et cetera. So uh we've got a we've got a lot of work to do uh in terms of those diseases. Uh but I I I feel very strongly that F and D is uh is based in a series of brain networks uh that are uh malfunctioning. Um, that this is this is a disorder uh where uh if we understood better the underlying pathophysiology, the way the networks are abnormal, we could help better. Uh that's been true for every other aspect of neurology. Why wouldn't it be true uh for FND? So I think that the work of David Perez, uh, the work of uh there's actually an FN uh uh FNDS uh uh imaging work group that is working on these problems now, trying to do uh better collectively at having common protocols. Uh so uh this is an area where uh I think that's the the entree into getting a better knowledge of the way that this disease works. Taking that information uh to population levels and understanding susceptibility, why some people have stress and get F and D and other people have the same stress and don't. I think that getting to population level understanding of F and D is is the next frontier uh beyond the neuroimaging. So those are areas that I might take the rest of my career, but that's what I hope we can get to.

SPEAKER_01 50:58

Yeah, that's wonderful. I I imagine Jersey's probably on that neuroimaging SIG.

SPEAKER_00 51:02

I would say there's a lot of people I should list. Absolutely. Yeah.

SPEAKER_01 51:05

Wonderful. That's great. Yeah, he he and Kurt have have really pioneered, although I appreciate Kurt had told me just recently it took you know almost a decade to get neuroimaging studies kind of approved for this patient population to get funding for this patient population because it's not regarded as something like MS, where of course you're gonna take, you know, do MRIs or fMRIs to understand various neuroanatomy. Um, and it's just keeping pressure on the scientific community that there are neurobiological underpinnings to this condition. And yes, we do need to know that and explore it. It is clinically meaningful, which is just so great to hear. And and I do think you know, most of our listeners would appreciate, although maybe not our trainees, and there's there's a fair bit of trainees, that it's Dr. WA is relatively rare, I would say, in having a primary research clear, 80% research while still being so fully involved in a multidisciplinary FD clinic as the primary, your primary clinical time, right? That's I I think most F and D researchers are clinicians first, and then there's a handful that are primary researchers, but it's we're we're skewed towards a lot of clinicians at this point. So I think it's great that you're straddling both both sides of the aisle.

SPEAKER_00 52:26

Uh it's so much fun. I recommend it to anybody.

SPEAKER_01 52:29

Yes, exactly. And hopefully it will become an easier career option, right, for trainees and um our students as they're coming up to have both a thriving research career, ideally in something like neuroimaging, um, and FND and let both of those things coexist. Um, yeah, I just really appreciate your insights and your time and your willingness to go from basal ganglia neuroimaging research to a multidisciplinary FND pediatric practice and taking the time to discuss all of these highly relevant clinical components with our listeners today. So thank you for your work and your time today. Yeah.

SPEAKER_00 53:12

Well, if I can leave your folks with with one message, uh, it would be that uh that they and everyone that they can influence should should fall in love with FND for entirely selfish reasons. Uh, that that there are very few patients that I can get walking again after they've had a spinal cord injury or get talking again after they've had a stroke. Uh, but that that that rush of dopamine I get when I'm able to get a patient back to their level of functioning, there's nothing like it. I mean, you you never feel as good uh uh as when you're able to help a patient. Uh so this is the population that can give you more jolts of dopamine than just about any other.

SPEAKER_01 53:52

I love that the basal ganglia neuroscientist is referencing dopamine. I'm just not gonna comment on the irony of that, but that's that's a perfect way to end this.

SPEAKER_00 54:02

I can go as deep as you want to go.

SPEAKER_01 54:05

Wonderful. Thank you so much for your time.

SPEAKER_00 54:07

Thank you, Erica. Take care.