Hi, everybody, welcome to tonight's member May session with the pediatric community. We are excited to have everybody on. And while we get started here, I'm going to share a couple of quick housekeeping slides before turning this over to the group. 1, 2nd, while I get to sharing. All right. Our quick housekeeping notes are just that the views expressed during the session or those of the individual presenters and participants do not necessarily reflect the positions of a PM and are. Is committed to maintaining a respectful, inclusive and safe environment in accordance with our code of conduct and anti harassment policy, which is available at a dot org. And all participants are expected to engage professionally and constructively. And then, additionally, this activity is being recorded and will be made available on the academy's online learning portal for all members. An email will be sent after this activity with a link that will bring you to the recording and the evaluation. So, for the goes through that evaluation for the best attendee experience during the activity, please mute your microphone when you're not speaking. And to ask a question, you can use the raise your hand feature or unmute if you're called upon. Or use the chat feature to type your question as well. We'll be taking questions at the end of each segments, assuming it as time allows. So, if we're able to do that, we'll do that throughout at the end of the segments. And those are my housekeeping slides. So I'm going to turn it over to the rest of the group. Okay. Well, thanks, Megan. Welcome, everyone. I'm Kim Hartman. I'm the current chair of our member community. And we will just get things started while others are joining us. So, Let me share here. So our presentations tonight are off the beaten path. So we're hoping that everyone learns a little bit of something and it kind of ignites some interests and allows you to imagine and reimagine what you're doing with your work at your institution or in your program. So we'll start with this quick introduction here. I'll go through a few things as well. And then we will get started with our three groups that are listed here. And then at the end, we will have a quick wrap up. So just a quick reminder of who we are. So myself, Elizabeth Martin is our vice chair. Becky Siegel is our communications chair. Dinesh Ratnasingham is the education chair and Amanda Stubbs is our current trainee chair. So this is our leadership group for our member community up until our annual assembly here later this year. Just as a reminder, things that we work on throughout the year, in addition to this session here for member may is we have a monthly lecture series. There's a board review series, journal clubs, we will be putting on the fellowship, Excuse me, fellowship fair here next month. And then as it relates to the annual assembly, we will have a business meeting that reviews kind of everything that we've been working on as a community, a networking event where we can all kind of find some time to meet up. We also help with the advanced clinical focus day, although that is primarily through the program planning committee, and then help kind of coordinate peds day, although that is primarily through primary children's this year. So we try to work together so that we can create some robust content without a lot of duplication and that all of these activities work well together. All of these are advertised on Fizz forum and through the Facebook group. So if you're not getting those, let us know or make sure you are signed up for both of those. So I will turn it over to our first group talking about the Courageous Parents Network. As Megan mentioned, each group will give their presentation and then we will have a few minutes for questions for that group. So please put those in the chat or raise your hand. Elizabeth will help facilitate that. But as we get closer to our next session, we will may have to cut things off so that we can move on. And if there's time at the end, we will certainly have a chance for more questions. So I will hand it over to our first group. Thank you, Kim. So hello, everybody. I'm Erica Erlandson, and I'm working on this with Marina Ma and Chrissy Sally. We're going to talk to you today about a really important organization called the Courageous Parents Network. I'll just tell you a really quick personal story about this. So I work in a community hospital in a rural area of mid Michigan, and I take care of lots of kids with chronic complex conditions and serious neurological illness. And I use this organization and their resources on a regular basis to help have difficult conversations and to connect families because my families feel very alone because they live in very rural areas. And so this is a way that they sort of feel connected to each other. And I've had patients come and like back to me and say, you know, that was really important. And on the nights when it was really, really hard for me, this gave me the words and the courage to make the best decision for my kid. So I'm going to hand it over to Chrissy and let her tell you about the Courageous Parents Network. Thanks so much, Erica, and thanks to all of you for allowing CPN to be part of your evening. I am Director of Clinician Engagement and Outreach at Courageous Parents Network, which means I'm essentially a liaison between CPN and providers of all types and all places. So it involves a lot of engagement in children's hospitals, but also community based providers as well. And I am today going to give you a quick high level overview of CPN, but we give presentations regularly and would be very happy to come to a departmental meeting or lunch and learn to give you a much more in depth overview if that's something you're interested in. CPN is in its 11th year of existence. We're a national nonprofit organization that was started by our founder and executive director here, Blythe Lord. She is in this picture with her daughter Cameron. She's the mom of three girls. Cameron is the middle daughter. Cameron was diagnosed with infantile Tay-Sachs disease just a few weeks after her cousin, her male cousin Hayden, was diagnosed with the same condition. This happened in the family because Blythe's husband is an identical twin, and so they both had these very young children who were diagnosed with a fatal condition within weeks of each other. And Blythe was inspired by their family's journey, the provision of pediatric palliative care, and psychosocial support, merged with her background in television production and distance learning to produce Courageous Parents Network, which initially began as a by-parent, for-parent sort of thing based on her family's experience, but has rapidly evolved into a by-parent and clinician, for-parent and clinician destination and enterprise based on the collections of many, many, many stories well beyond that of just her family's. So as I mentioned, we're a national nonprofit. We offer digital resources and programming that are free. We are proud to be the only organization that serves as a liaison to the Section for Hospice and Palliative Medicine for AAP. All of our resources are developed collaboratively, so we always have parent writers and developers and clinician and researcher collaborators. So I mention that because I hope that you can move forward using CPN's resources with confidence, that there's a strong evidence base, but also that they're illuminated with the parent perspective that really brings them to life. I'll also note that we have a mobile app, which makes it easy for you to use CPN at the bedside. It's also a great resource. To Erica's point about families in the middle of the night, it gives them something to scroll that we believe and hope is a safe destination for those late hours when they're feeling all alone. I'm going to introduce you to some of our digital resources. So beginning with our video library, this is really how Blythe started the CPN experience. We have now over 700 video segments of many parents, but also extended family members like grandparents, aunts and uncles and siblings, and a large group of clinicians talking about the family lived experience in pediatric health care. We are disease agnostic, so you'll see families that represent a wide range of diagnoses, although as the presentation is titled and as Erica referenced, a large portion of our families are caring for a child with SNI. And I would say the most common reason parents are coming here is because their child has a rare genetic condition, although we have a lot of families who come with some other conditions like pediatric cancer or cardiac issues and so on. When you look at CPN's webpage yourself, you'll see that the video library topics extend well beyond just those four you see here so you can scroll down the page to see a whole host of videos and we're going to share an example of our videos with you in just a few minutes. In these videos, which are about two to eight minutes long, they're really slices of much longer video interviews, you will hear parents talk about their perspective, their experience, naming emotions, naming things like anticipatory grief, talking about how they engaged in shared decision-making conversations, talking about how they approached family life after their child had a serious diagnosis, and all of these things, which I think here and also the blog, which is depicted on the right side, are where families feel less alone. And we do survey our parent and clinician users every two years, and parents consistently say the number one thing they get out of CPN is feeling less alone and isolated. But these videos and blogs and our other resources also equip families with language used to understand and describe their own experience, but we also equip them with language to empower them to engage in conversations with their child's clinical team. So as I mentioned on the right side of the screen, you'll see an example of a title from our blog. We have a really robust and active blog. We try to publish about 40 blogs a month. Most of the writers are parents, but some are clinicians and other family members, and it's a heavily trafficked part of our website, usually coming from social media. We have a really wonderful set of guides that provide psychoeducation on a topic to parents and equip them with skills and knowledge, again, to care for their child, to navigate this journey, and to enter conversation with their clinicians. Our guides are available in English and in Spanish. Our most heavily used guide, which is championed by many pediatric palliative care clinicians, is our considering tracheostomy guide. So we do have some decision-making guides that are specific to a particular intervention, and you should know that at CPN we are agnostic and unbiased about all things, although we are very pro-palliative care. But because of that, we will show parents on our website that have opted for an intervention and those who didn't, so that parents feel empowered to make the best decision for them. We hold monthly events. These are live webinars, but the recordings continue to live on our website, so they can be viewed at any time. These are intended with parents as the primary audience and who we hope will benefit. However, our webinars now have 50% clinician registration and attendance, which is something we're really proud of. We actually also have almost nearly equal members, clinicians, and parents in our network, which just means we have email addresses for those people. We hope that you'll join, too. It's free so that we can keep you updated. But we really are a destination for both parties and cover that intersection now, kind of like an event diagram, that space between family and provider. You can see here some examples of the upcoming events. Next week we have an incredible financial planner who specializes in supporting families of children with special health care needs. We have a parent panel about decision-making in June. We just did a sibling panel in April, so we cover all kinds of great topics. We have a clinician portal, so when you sign up to join CPN, indicate that you're a clinician. This is for self-education and training. It's a really great place to send learners as they're learning to equip themselves with skills for delivering bad news, what it looks like to engage in shared decision-making from the clinician perspective. We have a parallel guide for parents and clinicians, introducing families to concepts of pediatric palliative care, and so on. Briefly, I want to introduce you to neurojourney.org. This is specific for families of children with a severe neurologic impairment. This was developed between CPN and Dr. Julie Hauer, who is a leading clinician in the space of treating kids with SNI. It starts with a video on the main page that educates the family on what it is we mean by severe neurologic impairment. This idea that whatever is going on in your child's body is ultimately relating back to issues of the central nervous system or brain, which is a concept we have learned parents really don't understand or it takes them a very, very long time to understand. It's important for them to understand because it can inform decision-making and just their general understanding of their child. It's a great tool for them to share with family and providers who are working with their family. Neurojourney is based on the concept of the arc of a life, which the idea is that all lives have a beginning and an end, and we believe that with the right supports, these children can have full and meaningful, robust lives in the middle. It is imposed on these four phases. All of this information has been beta tested, which I'm happy to tell you more about the development process at another time if you're interested. It's currently available in English, Spanish, and French with Portuguese, Mandarin, and Arabic currently underway for translation. The user is accompanied by a companion voice throughout, which is really the palliative voice. This has been very powerful with many parents telling us that they have gone through all of Neurojourney just reading the companion voice before diving into the medical content, which looks like this. It is like a map with those phases left to right and the systems or symptoms in which the family can anticipate needing to learn about over the course of their child's life. Each topic area has its own page dedicated to it. It can be listened to in audio, and there's anticipatory guidance here on the left and that palliative voice on the right. My information will be, I will put in the chat, happy again to do a deeper dive with anyone at any time. Now I'll turn it over to Marina. Thank you. Thanks, Erica and Chrissy. I also want to talk about why we're introducing CPN to all of you when we were rehab docs. I think it's because sometimes we are the trusted provider. We are that trusted person and the family looks to us to help them make decisions. They'll be asking, Doc, so you know us for a while. You've provided us with equipment. You've seen how my child lives so far. Now I am at a crossroad. I don't know what I should do about this tracheostomy. I don't know if I should get a spinal fusion. I don't know if I should get a hip surgery. So our hope is you can, some of the videos will, by watching some of the videos, you could kind of reflect on how parents make decisions and also to provide these resources to the parents themselves. And the reason why we're providing these two videos is, I think Chrissy, me, and Erica can kind of talk about these, how parents make decisions, but it has a different impact when you hear from the parents themselves. So these are the two videos that we will be presenting. Start with this one. Initially, when I thought of a trach, when they talked to me about the trach, you know, they said, you know, in the future, you would have to, you know, decide whether or not to trach your child. And I'm thinking, no, after seeing that little girl and the thought of, the way I thought of it at that point was cutting a hole in my son's throat, no, there's no way. And when he was 11 months old, he kept getting sick. He was on the BiPAP and we kept sending it back in the hospital. And in February, which wasn't that long later, they said, they tried to extubate him, you know, take him off the vent and they were unsuccessful and they said, you have to make a decision. Are we going to let him go and do comfort care? Or do you want to trach him and put him on a vent? So I didn't know what to do. I didn't know how to answer that question because my no from before was no longer on the table because losing my son, letting him go, I didn't want to do that. I didn't want to do that. So they were both bad choices. So I, I thank God I had my faith because I prayed every night for five days. I said, God, you have to make this decision. I cannot make this decision. I went back and I told the nurses, I'm ready for the PAC team, sat down with them. And I said, we're going to get the trach. So we did. And afterwards I was so grateful that we had gotten the trach because Alex had been so weak and he was always struggling and, you know, the breathing was just hard. And after he was put on the vent, he was so much stronger in so many other ways because he didn't have to struggle to breathe so much. And I remember a few, a few years ago, cause we were living in this house. So Zoe had already been born. So it may have been five years ago, six years ago. I was walking through Alex's room and he'd been sick for a while. And I remember thinking to myself, I didn't say anything. He didn't have a nurse that day. I was his nurse and I was walking through his room thinking, did I really do what was best for him? And I immediately heard the boy say, you didn't make that decision. So I immediately looked up and said, that's right, I didn't. So I didn't have that guilt that, you know, did I do what, it's so hard to make life and death decisions for your child. It seems very weird for somebody, but he's got this cute face and not that it's, it's just about looks, but it's not going to extend his quality of life. It's just going to add more to our plate. I have, you know, Isaiah who would be ripping out a trach. I have a dog with, you know, that's around him, would stare at just in their clothes. When you see them downstairs, they're all together, Avery, Isaiah and the dog. It would have added more madness to our life. So not only the look, but Isaiah, I mean, he pulls his central line on a regular basis. We have to, it just wasn't fitting with our family system. And I just, I had to really decide that what was he going to gain out of it? And any, any decision that I make for Avery and Isaiah is what is going to be the gain for it? You know, and while, you know, him not having a trach, yes, we have to do deep nasal suctioning and all that stuff, but we'll, we figure it out. I just feel like if it's not going to gain him enough, then, and it's not going to help his quality of life, then it's just not for us. And now we'll play this video, which shows a mom who had seen one of the other videos. Even before we got to this conversation, Blythe and I will tell you, there was, I forget the family's name, but there was a mom. There's a clip and she was talking about their decision to not do a trach. And I think up until that point, before watching that video had kind of been brainwashed. I have been brainwashed. You know, there's a fix. You can do it. If you love your kid, this is what you'll do. And in watching that video was, even though I wasn't at that space, I didn't need that at that time, it was such a light bulb moment for me, one that, no, you don't have to do this. And if you choose not to, you're still a loving parent and giving yourself permission to know your children and what's best for them and knowing what your family life is like and what's best for your family. And it is a loving decision to not do everything. And she looked like me. So having a Black mom and dad make this decision and know that you won't be criminalized and to be able to say I love my child with all my heart, and as hard as the decision as it is, it is the best decision for them. I can't articulate it any better than Naomi. And you're going to see a lot of these videos. So we truly hope that you yourself would explore it and then offer it to your parents. And these are some of what parents said about CPN. When I learned about the concept of anticipatory grief from you, I had never heard of it before. It explained exactly how I was feeling, which I didn't understand before I had a name to put to it. I felt so much relief to finally understand what, why I was feeling, how I was, and to find out that it was normal and that I wasn't alone. And shortly after my child received a palliative care referral and I was terrified of what palliative care meant or entailed, CPN helped me get comfortable with the idea of palliative care as an asset for my child's life, not a limiting factor. And a few other things is just knowing a community is available that is based with true health professionals allows you the peace of knowing that you're not going to, you're not going to an internet rabbit hole. And another parent said, when I'm feeling lost or something new has come up, I turn to CPN and it is amazing how much better I feel after. And then one last thing, I've watched so many of the videos during the quiet hours of the night, connecting with perfect strangers who are amazing parents that inspire me to be brave, have courage, and take one day at a time. And some days are easier than others, of course. And those are so, so true from what we heard from other parents too. So if you're interested, please, please, please contact Chrissy at Courageous Parents Network. We have brought them to Texas Children's and we are going to continue to bring, to partner with CPN. I think they're a truly amazing organization for you to work with. Thank you so much, Marina. And Erica. Well, thank you all. This has been very, very useful. It's definitely something I know I'm going to be implementing in my practice. For the sake of time, I think we'll move on to our next group. There will be some time at the end to circle back and then I'm sure the group won't mind if people reach out with questions individually as well. Sorry, working on this. Should know how to work Zoom by now. Okay. Is it sharing? There we go. Okay, sorry about that. It's a privilege to be here to share about a crazy experiment we're running down in Denver, Colorado. I'm Aaron Powell, one of the PEDS faculty here at the University of Colorado School of Medicine, and I practice at the Children's Hospital of Colorado, and I'm going to talk to you today about the treatment of children with functional neurologic disorder through a unique multidisciplinary outpatient clinic model. So as a review, functional neurologic disorder is defined by the DSM-5 as a phenotypically diverse neurologic symptoms that do not appear to be derived from currently recognized neurologic or medical conditions and cause functional impairment. And the hallmarks of FND are distractibility, variability, suggestibility, and inconsistency. And I just want to take a quick second to highlight how a team really helps to highlight these aspects of functional neurologic disorder. So we had a teenager who came to our clinic who had a very severe inversion of her foot posturing. It was quite impressive. She held her foot like that. I did my clinical bedside exam, was not able to elicit any distractibility or inconsistency. In fact, when she walked, she was walking on the lateral aspect of her foot. It looked incredibly painful. I was personally worried about focal dystonia. Our therapist then came in and evaluated the patient within the context of our clinic, and the patient was a gymnast, so they had her doing all kinds of stunts and handstands. And sure enough, when she did all of those movements, that positioning of her foot went to neutral. And we were able to document that and show it to her mother, who was actually a psychiatrist and skeptical of the diagnosis at the time, and helped solidify the diagnosis. There's a lot of information. I'm just going to blast through this slide. The point is that if you're working in this space, you know the numbers reported in terms of incidence and prevalence for this in pediatrics are low. It's an exploding diagnosis, and there's multiple theories in regards to that, but it's definitely on the rise. Traditional risk factors of FND include psychosocial stressors, history of trauma, or adverse childhood experiences, psychiatric comorbidities, chronic medical illness, or pain. But it's really important to know, and in our current understanding of FND, that many times there's no, none of these are present. Here are the common comorbidities we're seeing with FND. Obviously, anxiety, depression, autism seems to be a very huge comorbidity we're seeing anecdotally in our clinic. And then a lot of these patients have multiple functional symptoms, including pain and abdominal symptoms. So this is a fairly challenging, or at least a population with many challenges. They're complex. Many of these kids arrive to our clinics with big charts full of extensive and exhaustive medical workup. They have complexities in their family systems and their presentations. Usually what we're finding is their schools are overwhelmed and under-equipped to handle and manage and best approach these children. These kids have social reinforcements to their symptomatology, as well as family system reinforcements. They have often, if not every single time, received unhelpful advice and approach from previous medical providers, as well as inconsistent messaging. And they, as I mentioned early, have often mixed symptomatology, and it has impacted multiple functional domains in their life. And then finally, there's a real difficulty in terms of obtaining a diagnostic acceptance. So why did we create this clinic? Interestingly, it was a system need. I would say first and foremost, our neurology and psychiatry partners within our hospital system just did not have the bandwidth to take this population on. I believe, and hopefully you guys will be convinced by the end of this talk, that rehab is actually suited quite well for the treatment of this diagnosis. It's in our nature to be team-oriented, and that's why we decided to make this multidisciplinary. And then within our hospital system, rehab actually runs a complex concussion clinic, which is essentially kids with concussion symptomatology that persists longer than several weeks. And we found some real parallels between that population and the functional neurologic disorders population. And here's a paper by my co-director, Dr. Michael Kirkwood, on the quality of life for youth with persistent post-concussive symptoms. And amazingly, these kids are reporting quality of life lower than children with chronic medical conditions, such as diabetes, asthma, even end-stage renal disease, and lower than even kids with cancer. So we're finding parallels with the functional neurologic disorder clinic as well. So here's the team members of our clinic. There's a rehab physician, that's myself, a neuropsychologist. We have PT, OT, and speech therapy in our clinic, as well as a learning specialist, a social worker, and a nurse. So the roles very quickly. My role in the clinic is to confirm the diagnosis of FND, to assess for potential primary neurologic disorders. Up to a third of these kids will have, in addition to functional neurologic disorder, a primary neurologic diagnosis as well. I'm a big part of psychoeducation. I will, at times, prescribe psychoactive medications. And then, obviously, I sign for the referrals to therapies, neurology, psychiatry, etc. We have a neuropsychologist, as I mentioned, in our clinic, Dr. Mike Kirkwood, who happens to be pictured here. Just kidding, that's Dr. Freud. So he plays a role in the diagnosis, not only of FND, but also of secondary mental health diagnoses, such as anxiety, depression, OCD, and ADHD. He does this through interview questionnaire. And he also, within the context of our clinic, does performance-based neuropsychological assessment. He plays a large role in psychoeducation, education validation, and then he really is the liaison to outpatient mental health resources. We have a learning specialist. She's a teacher. She was formerly our inpatient rehab teacher. And she obtained school history, current educational plans, and accommodations. She liaisons with the school once we have plans for the kid to reintegrate. And she's really amazing at finding the one thing that can motivate a kid to return back to school. As I mentioned, PT, OT, and speech are within our clinic. They are crucial in terms of assessing functional neurologic disorder and demonstrating those positive signs to families. They help with creating treatment plans and strategies. They collaborate with community therapists and obviously give caregiver education. And I would make a point. One of the impetuses for the creation of this clinic was within our Children's Hospital network, we had a lot of therapists who felt like they were on islands with these patients. And our therapists and clinic serve as resources for those therapists. And then social work, who does assessment and support. They offer brief family counseling. What I'll say about social work is it doesn't matter how much mining the rest of us do, somehow the social worker in our clinic, she seems to elicit the big family trauma or huge social unrest that seems to unlock the case, so to speak. So that's amazing to have her as a resource. And then we have a rehab nurse who really is our air traffic control, keeping us on track within clinic, helping families to navigate our clinic and system after clinic visits, and then doing a lot of the administrative work and coordination for patients outside our clinic. Here's an example of a clinic schedule and how we kind of all go into a patient appointment one after another. So Dr. Kirkwood with neuropsychology and myself, which in we start, then school come in, then the therapists, then social work, and we'll wrap. It's complex because the Dr. Kirkwood and the therapist will actually take the patient from the parents, separate them to do assessment, to do some additional work with the patient. That's typically when our social worker goes into the room to work with the parent. And then we have a brief moment to kind of put our plan together and present it to family with a wrap. And then our nurses do teach back education and get the patient out. So it's three to four hours. It's pretty intense. So it's a busy slide, I apologize, but just running through some of the challenges I mentioned earlier and how our clinic addresses those. So these patients are complex. It's helpful to have multiple providers, history takers, most importantly, listeners. These social family systems reinforce symptomatology. We provide teaching and education throughout clinic, and it's by multiple providers and professionals. Again, schools can be overwhelmed and under-equipped. We prioritize school integration as a team, and we have a superpower, which is a teacher, which helps with that transition. Patients coming with unhelpful approaches from previous medical providers, inconsistent messaging. Because we're all in clinic, we've worked together. We have lots of consistency within the team and clinic in terms of messaging. And we do emphasize validation and hope. Mixed symptoms and impact on multiple functional domains. We really have a great holistic approach with our diverse and multidisciplinary team to look at all those domains. Difficulty obtaining diagnosis acceptance. We call it the pomp and circumstance by having three to four hours of the same message being essentially kind of presented. We have found that there is a more buy-in by the appointment. And then sometimes it's difficult to find inconsistencies, distractibility, variability, as I mentioned before. Team approach helps elicit those. There are some downsides to our clinic. Our main hamstring, I would say, to this clinic is just a low-throughput model. We're only able to see two new evaluations and two follow-ups within a half-day clinic. And so with this rising incidence of this diagnosis, that is a hard sell sometimes. The other downside is that our benefit is really, from a financial perspective, indirect or secondary. Meaning our clinic's not making money, but we're hoping to save the system money because these patients will, if you put tracers on them, they'll start visiting every single department within the hospital utilizing care and those needs. These children do have heavy coordination needs. This clinic, I'm going to be completely honest, is not the solution for all patients with FND. Some of our kids that we've evaluated need a more intensive model, whether that's a partial day or inpatient hospitalization. And then when you have therapy valves building within a multidisciplinary clinic, that sometimes can use, depending on the payer of the patient, that sometimes can use therapy appointments. So we want to be cognizant of that. I'm going to run through a quick case study. A 15-year-old with history of anxiety and depression and three months of inability walk came to our clinic. She had chronic pelvic pain that then progressed to leg weakness and tremor. She was an honor student, all-star softball player. We did uncover she'd lost a grandfather, which she was very close to and seemed to be the precipitating event. This is her prior to our clinic. She has this functional rhomboid, we would say, where these big movements while she maintains a base of support. She did get into psychology through our pain program. They recommended she get back as much as possible into activities. Here she is at softball breakfast, but notice she's still in a wheelchair. And so after three months of being in the wheelchair, the day after our clinic appointment, her mom sends us this video, her first steps in three months. And then a couple months after our appointment, this is her. So, you know, the tenets of this model are definitive diagnosis in the context of a comprehensive workup, clear psychoeducation recommendations, this is what we do, why we're hopeful, set the stage for positive and quick recovery, as well as empathetic validation. And this is a quote from that patient's mom. Thank you. Thank you very much. That's fantastic. I think that's a diagnosis that we are all seeing, increasing numbers showing up and needing care. I have a two-part question. First of all, I think this is a fantastic model with that multidisciplinary approach, so you can provide a very clear message to family and help with that buy-in. An area we've struggled with is the ongoing either psychiatric or psychologic support, so I was curious what your model is, how frequently you're doing your follow-ups, or how you're connecting with them with those ongoing supports. Yeah, it's such a great question. The psychosocial support is, as we know, so crucial for positive outcomes in many of these kids. Luckily, we have been able to piecemeal a mental health network. I think that's probably a lot of shared experience, where you just don't have that direct referral to psychiatry or even mental health therapy. So we've kind of piecemealed it. We have some rehab psychology support within an intensive outpatient therapy model, which has been amazing. We actually do, we're lucky to have partial day psychiatry access, actually. So those more entrenched, more severe presentations, we will send out that way. Then we've been able to make some community partners as well, to providers who understand the diagnosis, which is so crucial. You're right, good question. Those are fantastic resources. The second part, I think, is I like the way that you're supporting outside therapy providers as well. I think another part that we've found difficult is educating others on the differences in the rehabilitation approaches for those with this diagnosis, as opposed to more traditional rehabilitation. So I'm curious if you have any advice on that. Yeah, when you figure it out, let us know, because we'll still get kids in clinic who are seeing one of our network therapists, and it's clear the therapist is just going down the wrong road. So it's unfortunately really grassroots type movement. We take those opportunities to try to educate on a case-by-case example. Then as much as they'll take us, we try to be part of the system level therapy education that happens occasionally. Yeah. Well, thank you again. I don't see any other questions in the chat right now, so I'm going to ask for our next group to go ahead. Hi, everyone. Can you hear me? Cool. My name is Andrew McCoy. I'm one of the faculty members here at the Children's Hospital of Philadelphia, and I'll be presenting our Global Rehabilitation Interdisciplinary Program with the acronym being GRIP. The objectives for today, primarily describing our model of rehab services that we deliver to patients traveling to the United States at a single institution, to discuss insights and challenges related to delivering those services, and to just generate discussion. I'm hoping we'll have time at the end of this talk amongst all of us at how we approach providing rehabilitation care for patients traveling abroad. I don't have any disclosures and I also have our team members joining this meeting to also be part of the discussion as well. No disclosures here. In terms of background, when you think about medical tourism, the simple definition is just a patient or family traveling abroad for medical care. That could include traveling because there are services that aren't offered in their country or they're seeking services that are more affordable. Often, the cases that we experience here at CHOP and what's been documented in the literature is they can be pretty complex and sometimes even very rare diagnosis are traveling to different countries. Then these patients during their stays can have a lot of changing needs depending on their diagnostic or medical journey. That positions rehabilitation, especially in pediatrics and this interesting role of where do we fit in? The answer to that was the Global Rehabilitation Interdisciplinary Program. It actually started off with just physical therapy and occupational therapy providing assessments solo, communicating with each other, and designing therapy plans. In the pre-pandemic model, it was typically four-week episodes of care that was standardized. After the pandemic in April of 2022, pediatric rehabilitation medicine was added as part of a multidisciplinary model. They would share a clinic. Prior to that, really the referrals to Pete's Rehab were scattered and sparse and the group here didn't really have the bandwidth to handle a separate clinic. We eventually added a program coordinator in August of 2022. Because again, even with adding PTOT and physiatry, the care was not well-coordinated and it was really difficult. We added speech-language pathology in August of 2023, and then I started here in September of 2023. I've just been part of the program, developing it and just trying to really enhance it as much as possible with the rest of the team. The GRIP team. We have our program coordinator, Kelly Ferry, who is on the call. She's an occupational therapist and also serves as our assistive technology professional for equipment needs. In terms of pediatric rehabilitation medicine representation is myself, and then Dr. Sally Evans is on the call, who was instrumental in developing this program prior to me starting. We have physical therapy, which is Elizabeth Balance, who's on the call. Physical therapy assistant, Addy, who's not part of the call but is an awesome member of the team. We have Dan Fitcher, who's an occupational therapist, who's part of the call. We have a certified occupational therapy assistant, Jessica, who's not part of the call today but is an instrumental member. Then Kayla Connelly is our speech-language pathologist that's going to be joining today as well. In terms of the flow, when you want to break down how do these patients, when they travel abroad, how do they get here to Philadelphia? It starts with a referral, and that could be either directly from the embassy of their country of origin, or often the families will basically go online, search social media and provide a self-referral with just some basic information of what they're looking for. I will review those referrals and provide some preliminary recommendations for an evaluation, and just some thoughts on management. Once the families arrive, we provide a multidisciplinary evaluation and develop a therapy plan, equipment bracing, and my medical management will typically include things related to tone management, sciallaria, pain, bound bladder, any orthopedic screening or needs, and then I'll provide referrals to different services. Our program itself will cover in different slides where we provide different models of therapy services. Then we will often follow up with the families to determine if there's further intervention that's needed, and prior to discharge home, back to their home country, we create these custom letters, and we'll coordinate the delivery of bracing and equipment. In terms of countries of origin that we serve, based on data from June of 2023 to July of 24, we're primarily serving a lot of patients from the United Arab Emirates, and CHOP does have a relationship with that embassy. I also want to give a shout out. I don't know if she's on the call, but Dr. Lisa Thornton is a trailblazer in Pete's Physiatry. She practices in Qatar at Sidra Hospital, and so we also serve patients from Qatar and Saudi Arabia. Other countries of origin where patients will travel abroad from could include Kazakhstan, the UK, Canada, various countries in Latin America, including Argentina, Peru, Ecuador. We have families coming in from the Caribbean, including Jamaica, the Dominican Republic. It's really all over the board, and in terms of diagnoses, it's all over the board. It's a real tour de force of Pete's Physiatry and pediatric rehab medicine in terms of addressing different needs. Our outpatient intensive model is probably one of the main things that distinguishes us in the hospital and what a lot of families seek. Our inclusion criteria is if there's limited access or limited prior exposure to skilled therapy in their home country, change in function, assessing tolerance to an intensive program and having achievable family-centered goals. Exclusionary criteria would be if there's an upcoming surgery intervention that would limit consistent participation, lack of goals or limited tolerance, and if they're looking at a longer course of care, that would be required to meet intensive goals. In terms of the setup, so typically we will meet on a Tuesday morning as a team, we huddle, talk about the patients for the day, and then for our intensive program, what we do is we will have daily PT, OT, five days a week, speeches two days a week, and then on that day of the week that we huddle, I will physically be there for rounds and for their therapy sessions. So I will see each kiddo and address needs related to each patient. Our typical duration is two to six weeks. When we transition the kiddos to a non-intensive frequency, that could range in frequency from one to two times a week, for two to eight weeks prior to discharge home. I've been reaching more in terms of designing family meetings to organize and review goals so the families feel more prepared before going back home. As the kiddos transition to a non-intensive model, we will primarily choose that up front if we think that there's any issues with inclusion or exclusionary criteria, or if we think that we're looking at the patients almost as if they're very young, and maybe they would qualify for early intervention services, and we're playing more of a supporting role as they're seeing other subspecialties across the hospital. This is where we'll typically be using our aquatic therapy services. Again, it's usually therapies one to two days a week, duration two to eight weeks. For these kiddos, I don't do weekly check-ins. In terms of change in volume, so this figure is showing the evolution of the program and how the format has changed for patients seeking our services. Whereas in 2022, it was primarily PT and OT, and separate evals, to now, we're projecting mostly just all of our evals are coming in, and we see everyone as a team. Then in terms of our therapy session volume by model and discipline, what we're looking at here is basically like a 56-44 percent split between non-intensive and intensive respectively. This is about 3,800 therapy visits in terms of volume. Outcome measures is like an ongoing discussion for our team and as a group. The one that we are using probably the most is the Canadian Occupational Performance Measure, which essentially is a patient-centered measure evaluating occupations related to self-care in other areas. We'll also use time function tests, strength, balance, range of motion, and tone measurements, and really any diagnosis-specific measures. As an example, for a child with a dystrophinopathy, we will do a North Star. There's other areas that we'll use in terms of assessing outcomes. We use the GMFM-88 a lot. Then Kayla Connolly, our speech therapist, designed what we are dubbing the receptive expressive dynamic assessment, which is an assessment that takes into account cultural considerations for patients and try to figure out what their speech impairments actually are in their native language. In terms of COPUM, that's the acronym. The COPUM data, we are definitely using evaluations a lot more in our therapy sessions. When you look at on figure four here, the change score, typically in the literature, when you're looking at what's the change pre and post intervention for a family in domains of satisfaction and performance in different activities, you're classically aiming for a change score of two, which would be a minimally clinically important difference in the change. Now, there's some newer literature to support that you got to aim for a three, which I consider more of a character dangling, but I consider this a win there, at least hitting a two. Now, what I want to do is I want to turn over this next section in terms of cultural considerations to Dan Fitcher, who's our occupational therapist, and Kayla Connolly, who's our speech therapist. We'll work our way through different team members through this section. Dan and Kayla, you can take it away. Yeah. Sounds good. Hi, Kayla. You want to go first? Yeah. I wanted to hop on what Andrew was saying in regards to cultural considerations for assessing language for this population. We have a lack of accessibility of standardized assessments that are normed on monolingual Arabic speaking individuals. The majority of the assessments that we have access to here at the hospital are normed on monolingual male children. With that into consideration, we can't, those scores would not be valid. I created a dynamic assessment measure to assess their receptive and their expressive language. There's close collaboration with interpretation services, which we are fortunate enough to sometimes get access to in-person interpreters, which is a really key piece to being able to understand their language skills in Arabic when I myself do not speak Arabic. Counseling and talking with the interpreters to ensure that they don't provide extra cueing, verbal or visual cues to family when children are answering questions is something that is a really key piece for assessing language for this population. Thanks, Kayla. I'm going to build off of that and talk about some additional cultural considerations. As an occupational therapist, doing a lot of questioning and digging to identify meaningful occupations. What does the patient and the family do with their day? What routines, habits, roles, rituals, etc., are they currently including in their daily lives? Where are the opportunities for therapeutic intervention? Thinking about how self-care may be different across the cultural context, we're seeing a lot of patients that come from the UAE, thinking about different types of clothing, different routines that include prayer, different places that you may sit throughout the day for eating, not making assumptions when asking questions, identifying some of the variability that could present within those answers, but not in a leading way, and then using that information to help inform goals and our plan and to determine whether or not that patient would benefit from therapy. If the family is content providing assistance to the child because that's something they value as a family, then that would impact our decision-making as therapists. So really trying to think about what those cultural specific roles and different occupations are that the family may value and using our tools that we have in our toolbox to really identify them and make sure that we're working on those versus us making up our own goals or coming to our own assumptions about what that child and family should be doing. Awesome. Thank you, Kayla and Dan. So now I'm going to turn it over to Elizabeth Balance, who's our physical therapist at the clinic, to talk a little bit about setting expectations. Hi, everyone. Can you hear me okay? Perfect. So I'll talk about setting expectations and some of the things that we encounter with regard to setting expectations in general, so not PT-specific, but really for the whole team and the process of establishing a rehab plan for these patients and families. We do find that for a lot of them, this may be their first experience with rehab services that are targeted to address functional outcomes and family-centered goals. So the idea of goal-setting or participating in a goal-setting process may be quite new to them. Those initial goal-setting conversations often continue beyond the initial evaluation. So we may be talking about that as a team at the time of the evaluation, but completing the COPA might be something that happens at the second visit once they've had a little more time to think about what functional outcomes they'd like to achieve through their therapy plan. We do primarily deliver services in an episodic model of care at our institution. Service delivery at home may be more continuous, and we find that by asking families about the therapies that their children are receiving at home, what that looks like, what they're working on, how often is it, what is the therapist doing, what is the child doing, getting really specific about some of those questions helps us to understand the models of care at home versus the models that we might be providing at our institution. We do hear a lot that what's happening back at home for a lot of these families may be more passive in nature, like massage, stretching, things like that, whereas we tend to find more success certainly in our model that we're providing at least through more active exercise, for example, and that may be something different that the family hasn't experienced as much of before. I do feel like we're able to get pretty good buy-in with that. I feel like we get a lot of good engagement from families in terms of participating in exercise within the sessions, but there are certainly different perspectives and expectations related to the indications for high-intensity therapy. For example, if a child is receiving daily or three to five time a week hands-on therapies at home, like stretching and massage, why are we not matching the frequency here even if the interventions are different? So these are often conversations that we're having and really collaboration that we're trying to engage in with the families to come up with the plan that works best for their child and works best for them as a family, knowing that it needs to work for everyone for it to really be effective for them. There's also differing perspectives on the benefits of home program implementation and who should be implementing that and in what context. This can certainly be a sticking point if it's not something that families have done before, been provided with exercises to do at home. And certainly a question from their perspective, why implement a home program when we came here for care, when the therapist is able to do it? And so sometimes those conversations do take place over quite some time as we're trying to build the family's comfort and confidence in implementing a home program, trying to get that buy-in for some carryover and really show them that they can be effective in helping their child through those means. But we've also had to really expand our definition and our perspectives on what the transition from skilled one-to-one services looks like, especially if we're moving towards discharge or if we're preparing a family to go back home. One really exciting thing that we have starting up just last week actually is a group exercise program so that these families can work alongside each other or even together in our gym setting, but still collaborate with a provider, but in more of a group setting with more of an HEP implementation focus. So we've had to change how we think about things and trying to give families more of a bridge to being independent with their exercises and with the things that they've learned while they're here. Awesome, thanks, Elizabeth. And then I'll turn it over to Kelly Ferry, who's our program coordinator, to talk about coordination. Thank you, Andrew. Yeah, so my role under the guidance of Dr. Evans, who I know is on this call, about two years ago, we decided that a program coordinator was required because, you know, Dr. McCoy alluded to, it was sort of all over the place. So about two years ago, Dr. Evans, we decided that almost everybody that gets triaged to our program or to just PT, OT in general, will come through our grip clinic. What happens on the backend from my point of view is I get to see where kids are funded from. So a lot of times our referrals come from an email triaging system where Dr. McCoy is responding with what he thinks would be appropriate. Many times from there, patients get what's called a letter of guarantee. So on that letter of guarantee, it will say this child is allowed to have ortho, they're allowed to have neuro, they're allowed to have rehab. But oftentimes we have kids who are in-house referrals or they're self-pay referrals, or they have insurance, international insurance. So different children's plans look different for their plan of care here. So what we need to do from the backend is coordinate what is gonna get authorized, how much time, what's the length of stay for the patients, what is the expectation for future surgeries? When are we going to lose coverage? Rehab is not always guaranteed for every child. For instance, there's a perfect example that kids can get PT and OT under an oncology umbrella under the embassy funded, but that does not carry over to outpatient PT and OT. So if we see a child who gets referred there, we would have to start all over from the authorization. So my job is to clear all of that up so that all the plan of care within the rehab program that they decide during the evaluations can be completed. This also includes if we're asking for extensions. Now, we try very hard to not try to be a program that asks for extensions and be supportive care whether here for other medical events, but it does happen sometimes. So my job is to coordinate with the medical advisors from the other countries to write letters of medical necessity, to go through the notes, documentation, and I meet weekly with each of these patients has a nurse coordinator or a nurse navigator. And we go through each case. We give the information that is required for either approvals, authorizations, extensions, and it's reviewed with the medical advisors who then return information to me to give to our team. I also work in our adaptive equipment clinic to coordinate all of our equipment. So wheelchairs, standers, positioning chairs, bathing equipment, hoyer lifts, all of that is also done under the umbrella of myself and the GRIP team with Dr. McCoy giving the referrals for this from our GRIP evaluation team. So it's a nice cyclical system going on now. We try as much as we can under the coordination of care to assess, like I said, length of stay. So if we are determining that a piece of equipment is required, I'm gonna look at the length of stay to make sure this child is going to be here to actually receive this once they get the approval to avoid things like international shipping or ordering and it getting canceled because they went back home. So there's a lot that goes on in the back end for equipment needs. The other pieces, the PTs and the OTs, and sometimes speech with different eye gaze systems are also ordering equipment possibly during their therapy sessions. Our most common are AFOs or orthotics. And a little bit of some posterior walkers, things of those nature and some Hoyer lifts. So that is done in the same kind of way where we have to ask for authorization, write letters of medical necessity and ask for approval. So my job is to coordinate care to make sure those things are approved, that we have orthotists that are available to give fittings and measurements, get price quotes, things of that nature. And then the other coordination of care is just helping planning for family meetings and discharge. That's one of the biggest aspects of parents wanting to stay for a very long time. They want to be here. They want our services for forever. And how do we wrap things up and set clear expectations and also have a positive outcome for patients feeling comfortable going home to their home country. So working with the nurse navigators is also a big piece of getting them home as well. Awesome. Thank you, Kelly. Thanks everyone. And so I know we're running a little short on time. So just in terms of billing and costs, this really does come down to how long is the family gonna be here? What's the nature of their referral and payer source? And certainly comes into play in terms of what we're recommending and what we think is the most necessary thing in terms of rehab services. We've touched on these things through our insights. So lack of interpretation services is a big key challenge. And in-person interpretation is often a struggle. Lack of behavioral health supports. Bracing and equipment delivery can be very complicated, but Kelly has done a nice job to work directly with the vendors to ensure that these things run smoothly and efficiently. And then requesting extensions is a real struggle that families will often come to us and request, but we do try to be diligent and work with the embassies to really only provide extensions for those families that would really need it. Or an example would be if someone's in the middle of an intensive program and the embassy is requesting the patient come back, then I would provide sort of a letter describing why they would need to stay to a minimum complete the intensive. But that's very, very rare. In terms of development, so networking and branding. We came up with the acronym, it's GRIP, and we're networking right now. So this is sort of my first step to kind of network with colleagues around the country. Collaborating behavioral health services. So Dan is working with our behavioral health, child life and psychology teams at CHOP here. And then Lizzie described this new exercise program that we're developing here, which is really exciting. So I know we're running short on time, but I did wanna hear from all of you in terms of like what are existing or perceived challenges at your own institutions when addressing the needs of patients traveling abroad for care. You can feel free to put questions in the chat for now since we're short on time or unmute in terms of discussion and wrap up. But I am really curious kind of what everyone else is doing because this is something that's becoming more and more of a thing, especially since a lot of us practice at major pediatric tertiary care centers, like in our respective areas. Andrew, there is something in the chat. There's a question from Didem about have we compared the efficacy of the intensive program or two traditional programs in terms of functional outcome measures? And I don't know if you wanna address that. I will say that Didem initially when we started with this interdisciplinary program, one of our goals and one of the things that we were looking at was how to be able to contract things as far as what we were offering to patients into a time limited, into the limited time that was available for the patient to be in the country. And we had had interactions with the global patient services at system at CHOP and who had heard from various embassies or international patient care associations that they didn't understand why a patient's stay might be extended for such a long time. If we were using more of the domestic model or a longer term, less frequent approach to delivering therapy. So a lot of the way that we started with this is what is it that we wanna get done while the patient's here? And how could we make that happen in a time when we're looking at what may be fairly limited from when we got to start seeing the patient? And the rest of it in terms of comparison, the rest of you all can comment on that. Thank you, Sarah. I appreciate that. I will also say that we did initial review of the literature to look at intensive therapy. And a lot of the information that we got was diagnosis specific. So like particular to a patient that might have hemiparesis not particular to a patient that was traveling for medical care. So we're using that literature to inform our decision-making on top of all of the other contextual considerations. Thank you, this is fantastic. I know it seems like you've done a fantastic job of trying to capture as much as you can during the time that you have and then prepare for that transition home so that the kids can be successful. That's certainly a challenge we've had at our institution and it depends somewhat on what the reasons for them coming and what their ongoing follow-up may look like. But I do think that transition and coordination on an ongoing basis afterwards is something we all have to consider. Do you ever do any sort of follow-up with these patients or is it really truly transitioning back to their home country and then following up locally? Yeah, I mean, often what we... One situation that can happen is the family will return home for a period of time, but whether they need maybe a follow-up with one of the other teams here at CHOP or if we would specifically request that they come back for an evaluation for almost like another intensive, that's sort of kind of like one area. But yeah, in terms of follow-up, one of our team's goals is like, we wanna kind of travel to like the UAE, for instance, to kind of meet the care teams there to come up with kind of a sustainable model where we can discharge them, know the teams that they're going back to and making sure that there's good follow-through. And that's what we've been really trying to harp on. Often our shorter intensive durations are used for a lot of caregiver education and training to go back home feeling more prepared. But it's something we always think about and the families do like to come back. But one family described to me that when they have an opportunity to come abroad to a center here in the US, for instance, they describe it as like the golden ticket. And that's what the embassies kind of provide. And it breaks your heart sometimes when they're getting ready to go home and you can tell they don't wanna go home. They're not feeling quite prepared, but we are doing everything we can to prepare them. But yeah, so all of these questions are things that we are thinking about constantly. And we're trying to open up our bandwidth a bit to like look at these in a more academic sense and maybe like publish some of this at some point. So, but that's great questions. Dr. McCoy, if I can quickly interject, Aaron, I was just gonna respond to your question of, when the kids return to their resources of their home environment, do the gains persist? And that was one of the key drivers of starting our new exercise program. We're calling it the Global Exercise and Play Program, but the basis is for kids who have been discharged from an episode of care, but they're still here for other medical models and we've taught them a home exercise program. But our experience has shown that as soon as they go home, they aren't doing the exercise program. That's the bottom line is that that is what we have been seeing. So our goal, like Dr. McCoy said, is to like strengthen this and the goal of this group is to get them all together, have a provider kind of supervising the exercise program, but sort of having them in a group to see that they can do this and there's benefit behind it. For our perceived expectation is that this will make them want to do the home exercise programs more and not just revert back to not doing anything. But it is a cultural challenge. I just wanted to touch base on that. Well, thank you again so much. I know we're running a little behind on time, so I just want to turn it back over to Kim so she can have time for her wrap up. Okay. Awesome, everyone. Well, thanks for sticking with us here. I know all of these talks in and of themselves could be an hour and 15 minutes or more and lots of discussion for each of the areas. So I appreciate everyone's time and attention and hopefully if you have ongoing questions for any of the groups or it sparked any interest at your own institutions, I'm sure everybody would be open to reaching out to them independently or when we are together here later this fall, kind of collaborating in that way as well. So just a few things of what's next for our community. We do have member community elections coming up this year. So the positions of chair and vice chair will be open. So stay tuned for some communication related to that if anyone is interested in either of those roles. And then we have our annual assembly here in Salt Lake coming up in October and just highlighting some of the main pediatric events. So the Peds Day, which is adjacent to AAPMNR will be put on by primary children's and then within the assembly itself, the advanced clinical focus day, we will be having that again this year as well as our business meeting, networking event and then a variety of other activities throughout the assembly and different presentations. This is all of our leadership team's contact information. I believe some folks put their contact information in the chat if you have any questions. If you missed it, feel free to reach out to any of us or you could post on FizForum or Facebook if you would like to touch base with any of the groups from our session today. And that was all we had. So thank you everyone. We appreciate your attendance.

pediatric care

Courageous Parents Network

neurological impairments

Functional Neurologic Disorder

Children's Hospital of Colorado

multidisciplinary clinic

Global Rehabilitation Interdisciplinary Program

Children's Hospital of Philadelphia

cultural sensitivity

inclusive environment

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