Our overflowing audience. Are any of you all pediatric rehabilitation doctors? Any pediatric rehab docs in the audience? Make some noise. Future pediatric rehab, all right, we'll take it. All right, perfect. How hard is it for you to try, I guess you haven't had your practice yet, but while you're in clinic with your attending, oh, we got an old, all right, so good. We have the past and future. This is past, future, and present. What more could we ask for? So I guess, Carl and Samantha, whether it was in your clinic or the clinics that you've seen, how hard is it when you have that patient who's time to be an adult, how hard is it to transition a patient? Crazy hard. Crazy hard, exactly. That should be the caption of this talk, crazy hard. Absolutely. And then do we have any adult rehab docs in the audience? There's only one doc, we don't know what they're doing. All right. All right, I guess we'll skip this question. That was sort of my question, right? Like how many of you had had someone show up in your clinic that looks like this, right? I know I certainly have, right? They haven't seen their peds doc in maybe a decade and they're like, oh my gosh, what is going on in my life, right? So that's why these transitions are so important and that's why we wanted to talk about these things, right? So these are big objectives for today. I know they're a little bit long, but they're all really important. So we're gonna go through some of it. Before we jump in though to these objectives, just wanna give a little bit of background information. We know that from the Spina Bifida Association that there are about 166,000 individuals in the United States with Spina Bifida. And to our audience, how many of those do you think are adults, like percentage-wise? What do you all think? What's the split? We got this many that have Spina Bifida, how many adults, how many kids? Wow, oh, go ahead, I was gonna make a, 60% adults. What was that? 60% adults. 60%, pretty close, pretty close. We're looking at closer to a 50-50 split. But over time, I imagine that we'll probably see a bit more and more of that growth because we're doing a better job of, I think we're seeing less and less Spina Bifida over time. But yeah, we're about a 50-50 split, right? But the question is, who's taking care of these adults? They get great care when they're kids, but who is taking care of them as adults? And that's part of the problem, and that's part of what we wanted to talk about today. And then we talk about spinal cord injury, right? The incidence of pediatric SCI, about 17.5 per million in the population every year, which that's about 1,200 cases a year, right? So we're seeing a lot of this throughout the country, right? And they often present median age is about 15, right? So within a few years, they're gonna become adults, and who's taking care of them, right? So that's a big question that over and over, just who is going to be taking care of them? So I'm gonna start off first by turning it over to our pediatric SCI team. They're gonna talk a little bit about their practice and what they're doing in terms of helping to transition folks. Thank you, Dr. Stone. I'm Bella McDermott-Schneider. I am a current fourth year at the University of Kentucky, so graduating very soon, and will be the incoming Pediatric Rehab Medicine Fellow at Johns Hopkins. My fantastic attending, Dr. Clarice Sin, agreed to be a part of this call and to assist. She's our current Division Chief of Pediatric Rehab Medicine at the University of Kentucky, our first Division Chief of Pediatric Medicine at UK, and Medical Director of Pediatric Rehab Medicine at Kentucky Children's Hospital. Go ahead and advance slide. So when we're looking at pediatric SCI as well as spina bifida, a lot of the times the ideal multidisciplinary clinic is looking at both of those patient populations. Most of the large pediatric centers have a spina bifida clinic, and that's kind of where we put the pediatric spinal cord injury patients. As Dr. Stone already kind of went into with the statistics, that we're more frequently seeing the spina bifida patients kind of longevity-wise, because we meet them at birth, and then the spinal cord injury patients, of course, at whatever timeline at which they sustain their injury. There can be many parts of the multidisciplinary clinic, but these would be everyone that in the ideal world we would have in our clinics. So of course, physiatry for their spasticity management, autonomic dysreflexia to help with any of their prescription needs for the seating mobility and bracing, and of course, neurogenic bowel and bladder management Our surgical colleagues, neurosurgery and orthopedics can be a little bit more crucial for spina bifida as they're kind of following them throughout their life, neurosurgery, especially with their shunts, but also of benefit when we have them in a spinal cord injury population, especially if they're post-op, if they did require surgery after their injury. Urology for long-term care to follow with neurogenic bladder and for eventual procedures, if indicated to help with their neurogenic bladder. Some of our pediatric colleagues, both developmental pediatrics and medicine pediatric physicians, and they can help in the co-management of those needs. Our therapy colleagues, especially physical therapy and occupational therapy, and particularly in our spinal cord injury patients, if it's a higher level spinal cord injury and they're having communication or swallowing issues, definitely important to have our speech therapists. We can include our DME vendors and P&O colleagues as well, sometimes having them present in the multidisciplinary clinic to make adjustments while the patients are in clinic, whether it's to their chairs or their seating, or to look at their AFOs or other equipment needs that they have. Our nutrition colleagues to help to make sure that these kiddos are getting their dietary needs met. And of course, if it's a higher level spinal cord injury, if they're having a PEG-2, we're making sure that those dietary needs are met, having our social work colleagues involved, because these kids are gonna need things both from just being in society standpoint, as well as their schooling standpoint. And then neuropsych for all of our spina bifida patients, and particularly in our spinal cord injury patients, especially if it's a higher level spinal cord injury, they frequently have a concomitant TBI. Go ahead and advance slide, Dr. Slate. When it comes to transitions- Yes, may I add one thing real quick? Of course, Dr. Since. So I've worked in many different settings of these multidisciplinary clinics. That list was kind of what we ideally would like. I've had a clinic that had all of those, and I've had a clinic that had maybe two or three of them. And at my current location at UK, we don't yet have a multidisciplinary clinic. So if that's the case, you're kind of piecemealing it together. So I make sure that I am doing everything I need, but are all the players involved? I gotta make sure urology, any of the other specialists are involved, therapies, equipment, all of that. So it can look like a very different type of setting. Absolutely, Dr. Sin. And when it comes to looking at transitions, which is of course the focus of this presentation, is that transitioning is not a process that we start talking about when the child is 18 and we wanna transition them at 18. We wanna start as early as possible as Dr. Clamar touched upon. It is difficult to transition these patients. And so involving the patients and their families early, getting med peds involved, whether they're in the multidisciplinary clinic or whether they're seeing them outside of the clinic in just part of their care. They can help encourage independence of kids in transition to adult care. One of Dr. Sin's previous institutions at Texas Children's, they kind of started seeing the patients early adulthood, meaning 12 to 14 years of age, so teenagers. So starting to gain more independence and helping encourage that process. As parents are also transitioning from being the caregivers for these children and having the children take a more active role as they're growing into their adulthood. So why is it so difficult to transition pediatric patients? One of the biggest barriers can be insurance. So kind of depending on the area in which you practice, if everything kind of falls under the same umbrella, so at the University of Kentucky, which is where Dr. Sin and I are, then both the adult and the pediatric providers all fall under the umbrella of the University of Kentucky. So we all take the same types of insurance. So there's not a difficulty in transitioning from basically one clinic at one University of Kentucky site to a different clinic at the University of Kentucky site from an insurance standpoint. But depending on some academic hospital settings, I know one of Dr. Sin's previous settings, that the pediatric institution was under a completely different academic umbrella than the adult institution. So sometimes they had to keep their patients just because they could not transition them from an insurance standpoint until they were able to find providers that would take the same insurance. And then the other portion of transitioning is of course being able to have that warm handoff and give to an adult provider who is comfortable treating a pediatric spinal cord injury or a pediatric spina bifida patient in physiatry, as you'll hear about from some of our colleagues who are coming up soon. Plenty of adult providers who are comfortable treating spinal cord injury, and we have our fellowship trained adult colleagues, can be sometimes more of a challenge depending on the area you're in and having access to those providers if it's a congenital disorder like a spinal bifida and people might not be quite as comfortable transitioning with those patients. And also preparing these patients and their families that although there can be multidisciplinary clinics on the adult side, and I'll defer to our adult providers to talk about that, it can be less common. So preparing patients and their families that their ongoing care going forward might look a little different. They've used to, they might've been used to going to mainly a couple of visits a year and seeing most of their team at the same time and now they're gonna transition to the adult world and seeing those patients separately. Dr. Sin, anything else to add before I hand over to Dr. Evans? Yeah, just one more thing, more so spina bifida than spinal cord injury, but like we said, if they have a congenital disorder, some adults kind of panic when they have a pediatric, they might feel a little more comfortable with spinal cord injury, but when it comes to spina bifida, so at Dallas, I ran, or I was a part of, did the PM&R side of the adult spina bifida transition clinic. So it was 18 to 26 year olds, and I made sure all of the UT Southwestern residents rotated through that clinic with me to show them, look, it's not scary, this is what we're managing, and most of them aren't going into PEED. So I'm like, this is what you're gonna see, they're gonna have shoulder pain, you know, and just kind of approaching it so that when they go into either pain practices, general rehab, they feel more comfortable. So I would recommend, if you have any transition type clinics and you have trainees, it's important to get them in there and kind of get a feel for it. And then you mentioned the insurance is the biggest thing, a lot of adult places may not take Medicaid, which have a lot of our patients will have, and so a lot of times we've had to keep our kids until we can do a safe transition, because if you're managing a bunch of meds and it's a high risk, you know, if they don't have any follow-up, some, you can be forced to keep the patients until it's a good transition. You have a little better if you're in a big academic center, but that's not always the case. If there's barriers and in the pediatric world, a lot of the families are used to handholding, you know, they feel at the pediatric, a lot's done for them, and it's kind of like a rude awakening when they go to the adult side. So it can be hard to get the families comfortable with switching over to the adult world. That's all. Thanks so much. I'm Maya Evans. I am the medical director of the Spina Bifida Program at Shriners Children's Northern California in Sacramento. Can I have the next slide, Dr. Stone? I wanted to kind of focus on spina bifida transitions. We are very lucky to have the Spina Bifida Association's guidelines for the care of people with spina bifida. And I put all the underlined words in the slide have links to them. Hopefully that'll work for you all, but if you just Google the Spina Bifida Association, if you just Google those terms, all those things will come up as well. So the SBA or the Spina Bifida Association has these guidelines for the care of people with spina bifida. It's an excellent and comprehensive work. And then there's a whole chapter on transition. It outlines best practices and research questions as well. I think for me, I wanted to distill it down to just a couple of points for this group today. One is the importance of having a designated clinic staff person or people on your team to work on transition. At Shriners, we have our nurse case manager as well as our social worker. Obviously the physicians to some degree as well, but the main onus of transition and the preparation for transition falls on the social worker and case manager. And they have a bunch of tools for tracking and each institution will use their own tools. Shriners has had a number of versions throughout the years. The one on the right actually represents one that is co-opted from Got Transition, which is a huge resource available for transition and it covers all areas of healthcare. So this one is used for across different patient populations at Shriners and it covers things like, I know about my medical condition, I can talk to other providers about it. I know what medications I take, I know where to get those. And it really kind of breaks down kind of the need to know things. And similarly the TRAC, which is the Transition Readiness Assessment Questionnaire, Spina Bifida, is very similar but more focused on Spina Bifida specific information. So that's also available. So recommend using these things when you approach transition, usually around that age 12 to 14, and then throughout the course of transition so you know what you need to work on with your patients as you go through. I also find as a healthcare provider, it's nice to kind of even have like a little bit of a role play. Imagine you're in the emergency room today concerned about a urinary tract infection. Pretend I don't know you, and then I ask them silly questions like, Spina what? Use a catheter. So I try really hard to kind of create those opportunities in clinic as well. The next is referral to adult care. Like Dr. Sin had mentioned, we're very lucky to be part of an academic center. So I am both an employee of, or sorry, I'm an employee of University of California, Davis, and I work at Shriner. So I have a number of colleagues like Dr. Stone who care for adult patients at UC Davis. And so I can be in touch with them through electronic medical record and EMR and all sorts of very nice, secure ways to communicate. And that can be more challenging when you transition outside. We've been working on trying to get care closer to home for people with various urologic conditions. Fortunately, one of our urologists has been in practice for quite a number of years. So he knows a lot of the providers locally because they trained with us at UC Davis. So that's been helpful as well. And the other thing we're very lucky about at Shriners is because we're not dependent upon insurance coverage, our patients can continue to see us even after they've started to see the adult providers. So we'll place a referral at age 18 to adult urology and adult spinal cord medicine. But we can continue to see them in the meantime. So my joke is, you go see Dr. Stone and if you get sick of me or turn 21, whatever happens first, you can stop coming to Shriners. So that's kind of the way we play it. It's a nice way to be able to bridge that and to make sure we have a bit of a warm handoff. And then the last one is a medical summary. The SBA just released a beautiful document where you can fill in all the various areas of past medical history for people with spina bifida. Certainly some are more important than others, you know, in the grand scheme of things, but having that as comprehensive as you can really helps prepare the future providers to care for your patient. And for sure, having your patient have a copy of that is really important as well when they present for care. Next slide, please. Well, before I let our next speaker go, I just wanna say that I was like actively taking notes because it's just like the things that you are doing for pediatric patients are like things that we should be doing for adults, right? Like I need to be preparing my like adult patients, doing something, I need to do some role play. I'm very excited to start doing that with folks and to make sure they know what autonomic dysreflexia is when they're heading to the ED. I think I'm up next. Good evening, everybody. I'm Brad DeCiano. I'm a physiatrist at the University of Pittsburgh. I run the adult spina bifida clinic at UPMC. I'm also the associate medical director for the Spina Bifida Association at the national level. You can go to our first slide. And I just wanted to talk a little bit about our transition model in Pittsburgh. So first, I just wanted to share some slides that show images of our adult clinic. We were fortunate recently to move into a brand new building. The hospital system built a new tower that is exclusively for care of individuals with disabilities. Half of the tower is for vision. So it's people with blindness, low vision, and the other half is for physical medicine rehab. So this is what houses our adult clinic. And we have physical and occupational therapy integrated right into our PM&R clinic. Next slide. But I'll back up and talk first about our pediatric model. So our pediatric spina bifida clinic is a traditional multidisciplinary pediatric clinic that is housed in a children's hospital. So that clinic is run through PM&R. So we have physiatrists in that clinic. We also have a physician assistant who I'll mention again here shortly. We have our spinal cord nurses. So this clinic also sees pediatric spinal cord injury patients. And we have our surgical subspecialists in this clinic. So that includes neurosurgery, orthopedics, urology. We have PT and OT. We're part of the National Spina Bifida Patient Registry. So our data coordinator works in the clinic to recruit patients. We also have other services like an orthotist, a wheelchair vendor, a social worker, and a health law representative. And other specialty clinics may accept patients through referrals that are scheduled separately. We have same-day testing. And one unique thing about our clinic is that it's funded through Title V grant funding. So that's funding that comes through the Pennsylvania Department of Health that allows us to provide some of these services to patients. And another interesting thing about our clinics is that some of our staff are actually adults with spina bifida. So our data coordinator who works in the pediatric clinic is an adult with spina bifida. Next slide. Now our transition process is, you know, a process that starts early on when throughout all of childhood. So we're assessing transition all along the way. Our physician assistant, who I mentioned earlier, starts seeing patients around 16. And she is kind of our transition coordinator. So she starts meeting with them and doing transition readiness along the way. When they reach the age that we're getting ready to transition, we started a new process recently where we started scheduling separate transition clinics. So these are clinics where all the patients who are coming in that day are coming in to go over transition to make sure that they're prepared for that next leap over to adult care. So in those clinics, they're seeing our PA, they're seeing our nurse from the adult side, who also is an adult with spina bifida, and also our personal trainer who works on our adult side. He's an individual with spina bifida who's specially trained in adaptive sports, and he's a Paralympic athlete. So the patient gets the ability to not only prepare for transition, but also meet some peers who have spina bifida, who are adults, who are in a medical vocation, and that gives them the ability to meet some people on the team to make them a little bit more comfortable for when they switch over to the adult side. So the transition readiness is the same one that Dr. Evans was mentioning is the one that we use. We also use the Spina Bifida Association's transition summary. So the nurse who works in the pediatric clinic upon transition to the adult side will fill out a transition summary and transfer that over to us. Now, we do have access to the pediatric records, but the transition summary is extremely helpful because it helps condense all of their complicated history into one form, and that allows us to really focus our HNP and not have to search for a lot of that information, like what type of shunt does this person have? Is it programmable or not? You know, what type of bladder surgery have they had? Everything's all in one place so that we can, you know, focus on getting the information that we need on the adult side. Next slide. So then the patient transitions over to the adult side in our new building, which is in a different part of the city. And in this clinic, in the purple box, you'll see our staff. So this is not, we have a multidisciplinary clinic, but it's not multidisciplinary in the sense that the pediatric clinic is. So on our adult side, we have myself as the physiatrist, the same PA who works on the pediatric side is our PA on the adult side. So she's our bridge that sees patients all the way through transition. We have our nurse that I mentioned who is a person with spina bifida. We have a dietician, our personal trainer, who I mentioned before. On this side, we have two data coordinators for our national registry, both of which are adults with spina bifida, a social worker and a neuropsychologist. And similar to the pediatric side, we have, we're funded through the Pennsylvania Department of Health. We have same day labs and radiology. As far as our surgical specialists, these are separate clinics. So we don't have neurosurgeons, urologists, orthopedics, specialists in our clinic, but their offices are right next door. So we can do same day scheduling and they were able to get them in to see those providers on the same day if needed. We also have a separate assistive technology clinic where myself and our PA also work. And that's where we do all the assessments for wheelchairs and other assistive technologies. And on this side, we also collect transition experience surveys. So what we do is we survey them again after they transition about their experience. We try to survey both the caregiver and the patient and we ask them for feedback, how they feel they were prepared and taught different types of information and just general feedback about what we could do better. And we try to incorporate that into our transition process to make it better. And you can, yes, advance to the next slide. Okay. Hi, it's me again. I'm Shane Stone. I'm one of the attending physicians here at UC Davis Health. I am the Kumanar Director of Spinal Cord Injury. So I have the pleasure of getting to, and I'm the first person in this role in a very long time. So I have the pleasure of getting to sort of build out our spinal cord program. So I'm gonna be honest, I was taking a lot of notes as Brad was talking because he has out of UPMC, the model system when it comes to the transition to adulthood for these folks. And I mean, I'm very fortunate. I have Maya that I get to work with and we work together closely that helps with these transitions. But there are a lot of complications and things that come up. And I think it's really what Maya mentioned is sort of the model that we've been taking where it's a balance of the transition where over time you're adding a little bit more adult and taking away a little bit of that pediatric care to try to find that balance. And I think that that has been a really successful model and allows us to more smoothly have this transition. I've also found it can be helpful sometimes I've gone over to the pediatric hospital to see some of the patients to introduce myself early on that way I'm a familiar face when they do show up in my clinic. I think one of the biggest things that when folks with whether it be spina bifida or with adult SCI when they come into the clinic is they're like, well, where are all the other doctors? Where are all the other specialists? I'm used to a one-stop shop. And I think that's one of the biggest challenges that I face at my practice is that, these people, especially who come from really far away are expecting they're gonna get to do everything all at once. And it's one of those unfortunate things that we lose in the pediatric space, which was mentioned earlier about the limitations of insurance, right? At Shriners or even the pediatric world, right? It's just the reimbursement and those models are just different that you can have a million different providers in one visit and it's, and it works itself out. And they do it really hard. As Brad mentioned at UPMC, they have grant funding that helps facilitate this. So this is something that does take some onus to help to create and establish that type of model in a clinic, unless you have a system that's willing to provide it. And again, also, I think an important caveat that we all have is being at academic centers, right? I think having organized this, that was a shortcoming is not trying to have someone at a non-academic center to talk about that transition because that's even harder, right? Trying to find an adult provider who's willing to take on patients. I can tell you in the spinal cord world, there is a shortage of adult spinal cord injury doctors. And then within that, the amount of spinal cord injury docs who are willing to see patients with spina bifida, right? It's a really small number. So being able to find providers who are willing to do that, I think is one of the big barriers. And I'd say one other thing that I really like to take the time when I do the transition visits, especially early on, is setting expectations and boundaries with parents and with the child who's now an adult, right? Which is a really important component because they went from, every time someone asks them a question, they just look to mom and dad and they would answer and they would just smile and be there for the visit. But now they're supposed to be the main player. And as Maya mentioned, they make sure that they're asking them questions and preparing them, but still a different situation for them to really be in the spotlight. And sometimes I will take the initiative to ask the parent to step out, at least for part of the visit, just to give this person a bit more autonomy in their visit. Because I think that's a really important part is taking ownership. Because that's one of the things that I found that's really challenging is trying to convince the patient that they need to take ownership of their care, right? They used to have their parent who was cathing them, their parent who was doing their bowel program. But now it's like, no, you're like graduating. You wanna go off to college, right? You don't want your parent there to cath you into your bowel program. You really need to have the autonomy and that independence. So talking to the patient and getting an understanding of what their goals are for themselves, what are they hoping to achieve and really trying to empower them, I think helps to create a motivating factor to allow them to be successful and have fewer complications. And I think it's when we have these transitions that they have the best success, right? I joked about it in the opening slides, but it's unfortunate how many folks will come into my clinic who have had great pediatric care, like amazing care. And then there was a fall off in the transition and then they show up and it's like, I have pressure injuries. I think I have a tethered cord. I don't even know the last time I've pooped. It's been years maybe, right? Like obviously an exaggeration, but it's like, these are the problems that can happen when we don't have a good transition. And for those actively watching and for those watching in the future, right? Like these are the people to reach out to, right? We have some leaders in the field and trying to understand the best way to transition and understanding the best practices. And you don't have to reinvent the wheel, right? The Spina Bifida Association has put in a lot of time and effort because they recognize that folks with Spina Bifida are living longer and longer and they need to transition to adulthood, which is wonderful, right? So we need tools to do that. We have less of that in the adult spinal cord. We don't have these checklists and tools, but we can adapt them and use them and create our own, right? We hear some of what they're doing down at University of Kentucky and what is being modeled after some of the Texas programs, right? We can take some of these and adapt them. And that's kind of all of the main content that we had really provided. My big goal here was really to provide and have new people to ask some questions for the panel. So I wanted to open it up for folks to see what questions that they have. Some planned questions I can ask everyone if we don't have anyone. Be brave souls. Yeah. I'd like to ask a question. In Pediatric Spina Bifida Clinic, we spend a good deal of time going through our roster of patients and making sure that they have their next appointments and that they're not lost to care. My suspicion in our own internal system is that that work is probably not, that there isn't a person to do that at UC Davis right now. And I was just wondering, Brad, if you guys have a way to do that at UPMC or if it's more patient-generated, how do you kind of ensure that follow-up is available and made? That's a, yeah, great question. And our process has kind of changed over the years as we've learned and adapted. We're now using the transition form as a way to track patients. So what we do is when the pediatric side is getting ready to discharge and transition the patient over, they'll send the transition form over to us. And then that allows us to make sure that we close the loop and help schedule the appointment. We try to first rely on the patient and family to make that appointment. And then if we don't hear from them, we'll reach out and schedule. That being said, sometimes you do have patients that don't make the transition over. And the other thing I'll mention is that when you do have an adult clinic, you find adult patients in all different ways, not just from the pediatric clinic. We're constantly finding new patients who've been lost to care for years. It's pretty common for me to have a 50 or 60-year-old person come in as a new patient. Sometimes I find some folks through our assistive technology clinic as well or get referrals from urology. So yeah, I would say also be prepared for that, that if you're seeing adults, you're gonna find them in a variety of different ways. And it may be hard to get records on those old patients where they've been out of the system for a while. And once they've transitioned, Brad, to the adult care, do you have a way to keep track of your no-shows or assure that they're continuing their follow-up? I do, yeah. I have a, I keep a list of all of, I have a list of every patient that I've ever seen from the very beginning. And I use that list to keep track of when their visits are due. So I actually use a, like a spreadsheet that changes colors. So when their visit is due, their annual visit is due, it'll turn red. The ones that are in goal are in green. And that helps us keep track of who we need to reach out to. Again, we proactively try to, you know, rely on patients to schedule their own appointments, but we will try to reach out. And that's something that, we didn't always have a social worker. Well, we're fortunate to have a social worker in the last couple of years as a new feature. So that's something that we've incorporated into the social worker's role. I need to find a spreadsheet. I would say I learned to do Epic, how to look that up. But then when I brought it up to my nurse manager, I'm like, how can we keep track of this? She was like, I don't have time to do that. So yeah, I think maybe it might be something worthwhile for me to talk to my social worker about. Cause I agree, that's a big part is like, maybe the appointments are made and then they don't show up. And in the peds world, they have this excellent follow-up, but in the adult world, we don't have some, like we don't check in on folks, but you didn't make it, what happened, right? It's an initiative that has to be taken by the team. Yeah, I think unfortunately our electronic medical records do not have good tools for, you know, robust patient tracking. You know, sometimes you have to create your own tools for that. A question for our peds doctors is, how do you address some of the emotional, maybe psychological challenges that people face about wanting to leave, of not wanting to ever leave the peds clinic and making them feel okay going to the grownup world? I've done similar tactics to Maya that she talked about, about not just sending them off in the world and saying, good luck. I will schedule another follow-up as, you know, after they've seen their new provider to say, hey, how did it go? Are we feeling comfortable? And just to make sure, and then it kind of helps them know that I'm not just kicking them out the door. And then sometimes, especially when there's insurance issues, I've had patients I've referred and then something happens and it falls through and you might've thought it worked and it didn't. So I think that kind of helps safeguard that as well. Then I've had patients though, who just straight up no-showed because I made an appointment and they didn't want to move on. So that can be a little bit challenging. But we start talking about it when they're younger. You make good points about, you know, do you want to go to college? Do you want to live out on your own? I start talking about that to my teenagers, you know. If they are going to college, you know, is mom going to go live in the dorm with you? Because I'll ask them. Some say, no, I'm going to the dorm. And I'm like, well, how's that going to work? You know, and so we have to start talking through all of those things. And so I at least try to start having those difficult conversations when they're young. A few of them will say, nope, going to live at home forever and not have a job. But most of them who are a little more driven, you know, they'll really start thinking about those things. So I have a very different experience. I work in a spina bifida clinic that has never made any pretense about transitioning anyone anywhere. We still have 58 and 60 year olds who are coming to our clinic. So we are just building a transition program now that we have stolen Jessica Prokop from Pittsburgh. Thank you very much for your donation. We are just starting to put this process together. And I think one of the things that is going to be key from my standpoint is actually having Dr. Prokop come to clinic and meet the patients prior to making that transition step so that they have a friendly face when they eventually are going to a different building at a different institution, there will be a friendly face that they have seen that they know to help with that transition. Cause we're not going to have the kind of transition that you talked about in Pittsburgh where you can have practitioners going back and forth between the adult and the pediatric. We're not going to be able to share resources that way. So we need to have that transition piece of having a friendly face that they can recognize. I think that's a great point. I think having a friendly face in some aspect, it really, really does help. And I think there's lots of different models for how you can do that. You can have a provider who works in both sides. You could do it through telemedicine. You could have the adult providers just meet the young adult on the pediatric side through telemedicine at one point, or you could also do cross-scheduled visits where before the patient is officially discharged from the pediatric side, they have one visit on the adult side. So I think if you're creative, you could come up with, depending on where you are and how your system works, you could come up with a variety of ways to do that. But I agree. I think the key there is just that friendly face, that link so that they feel comfortable. Maya, did you have anything to add? Oh, I was just going to say that I always tell my transition to patients that I will always answer the phone for you. So even though we're breaking up, we can't see each other physically for service, whatever, but we'll always answer the phone for you and always be there. I hope that helps. And I mean, I guess this is a little bit harder question because we're all sort of in these areas, but have you all ever had situations or examples where maybe someone is transitioning and maybe they're moving to an area that doesn't necessarily have that academic center that's going to allow for like an easy transition? Like, how are you helping folks in that transition process of finding someone who can be like a specialist in their care? Sometimes Google, you know, if I know where they're going, I'll look to see if there's the closest medical center. I'll have the social worker help as well. And then the always fail safe is, you know, I tell them you need a urologist, a PM&R, who all the people are, and call your insurance, say, who's in network with me? You know, sometimes I help with the legwork, sometimes they do it, or some are still willing to drive to whatever the nearest big center is, if they need. From a PM&R standpoint, if I'm not doing all that much for them and they have a PCP who's very comfortable renewing the wheelchair or something like that, I leave it as, you know, you can be an as needed kind of patient. Because some of like the sacral spina bifida patients who are ambulatory, or, you know, kids who don't have that much difficulty, you know, I will discharge them to a primary care doc. So it just kind of depends where they're going. Because like when I was in Texas, I mean, there are people who literally live in the middle of nowhere, you know, and are eight hours from the closest anything. So I just kind of had to figure out what's the best route. It's hard. The Spina Bifida Association also has a lot of resources to help with that. There's a national resource center that providers or patients can call for help with finding providers. The Spina Bifida Association website also has a tab that has clinics. So you can search by state and see where there are clinics and which ones accept adults. And we're also working on a new initiative where we're trying to find physiatrists all throughout the country who are willing to be providers for these patients. So, you know, I'm thankful for this presentation, you know, to be able to reach out. If there are folks out there in the audience who want to see these patients, please let us know at the national organization and we'll give you the resources you need, education, get you up on our website as a provider, and there'll certainly be patients, you know, who want to see you. Yeah. I think that's a really good point, especially with the Spina Bifida component of it is, because it can be really scary because maybe you didn't see a lot of it in your training and maybe like, you know, you might be the only PM&R doc around. It's good to know that there are resources and things that you can lean on beyond like your network, right? But it's knowing that you can look in and people are out there because they want to help, right? Spina Bifida Association has gone above and beyond in trying to make sure that these resources are available, these trainings are available for folks. There's another question I had, this is more towards Brad, is you talked about the transition, like the surveys that you are collecting to get some information. Like, what are some of the things that you're looking at and like, how does that help? Is any of that helping you to define like what is a successful transition? Yeah, one of the things that we've found is, you know, lack of knowledge in certain areas. So although we try to give as much education as possible in certain areas, we don't always educate patients on everything that they need by the time they reach the adult side. So we're finding gaps in things like understanding the neuropsych issues related to Spina Bifida. So patients seem not to quite understand how their cognitive impairments or problems with executive function are impacting school or work. They don't understand that it's common for patients to have that. They think that they're very unique. And so our neuropsychologist has been spending a lot of time, you know, educating patients and trying to develop more pathways so we can educate patients earlier before they transition. And then a lot of other things like, you know, preparing for independence, you know, making sure families have thought about power of attorney and who's gonna care for patients once the parents become older, those kinds of issues. And we get sort of mixed feedback. You know, some patients are really afraid to transition because they're used to that, you know, multidisciplinary one-stop kind of care. And some patients are happy to transition because they felt like those visits were too long and, you know, took up their whole day and they're happy to have, even though our visits are still long, a somewhat shorter visit. So it just depends. You get a whole lot of different feedback and it's really interesting. It's worthwhile to, you know, really ask your patients what they want because it'll give you a better idea of how to, you know, model your program. And for our PEDS team, can either of you think of any particular cases where transition went poorly and maybe something that could have been done differently that could have allowed it to be more successful or what the barriers were to it being more successful? The one off the top of my head was, it was actually in my adult spina bifida transition clinic. So she was in the transition clinic and I was in the spina bifida transition clinic. So she was, I want to say 21, 22 and I had been doing Botox for her. She was a spinal cord, but I was seeing her in the spina bifida and, but she had a lot of stuff, migraine. I mean, I was managing a lot with her and she really trusted me and we were working together. And then all of a sudden her insurance changed and she was no longer allowed to see me. So I did the best I can. You know, there was no transition period. It was just like, we're done. And I followed up once or twice with her, but I'm not a hundred percent sure how well it went. Cause I felt like we finally got her in a good place cause she also had carpal tunnel from pushing herself in the wheelchair and had a job and the migraine. So it was a lot going on, but that was probably the worst one, but that was kind of out of our hands when the insurance changed. I think similar for me was insurance related that the transition plan fell through because the patient's insurance changed shortly thereafter. And so we were kind of left high and dry. I guess, Brad, I'm only asking Brad, but I mean, I don't want to comment because I just know, cause you're part of the association. So we're getting more of like a national level. Like, are there, because I think we all talk about insurance being the barrier, payment models being the barrier. Is there any type of like advocacy, anything that people who are interested can get involved in to try to help make some positive changes in that regard? Yeah, absolutely. I mean, there are areas where, you know, Medicaid isn't even accepted by some hospital systems and a lot of patients rely on Medicaid for care. So there's a lot of advocacy around that. There's advocacy right now about Medicaid cuts. So folks are worried about, you know, patients losing coverage for certain parts of their care. You know, you can get involved in advocacy for that. There's also advocacy around certain, very specific aspects of medical care. So like transanal irrigation, for example, was a big piece of recent advocacy where we made some headway and getting some of that covered. And we still have work to do on that, but that's just one example. We also are involved with, you know, advocacy around assistive technology and durable medical equipment. So if you have a passion for that, yeah, reach out at the national level. We could use help. Anything from the audience? Anything from our future fellows? Any other parting words of advice from any of our panelists? I mean, I'm okay if we wrap this up a few minutes early. Thank you all for watching. I hope that those of you watching in the future laugh about the fact that transanal irrigation isn't covered by Medicare at this time, and that they will start reimbursing for it soon. I know they claim they will, but hopefully we'll get there. Thank you all for taking the time. Again, please reach out to any of us if there are questions, things that come up. We all really wanna help this vulnerable population during probably the most vulnerable time of their life beyond when they were initially injured or when they were young. So we really just wanna allow for longitudinal success for these individuals. So thank you all again, and thank you for our panelists for participating.

pediatric transition

spina bifida

spinal cord injury

adult healthcare

multidisciplinary teams

transition coordinators

continuity of care

emotional support

structured planning