Pelvic Health Physical Therapy

The good fortune of having two colleagues. I have, uh, Sarah Cooper from Children's Hospital of Philadelphia being joined by Sarah Fox from Cincinnati Children's Hospital. They're both physical therapists, and they're gonna be talking today about the importance of, uh, pelvic health, physical therapy and a pelvic health rehab program. Thank you so much for joining us today. Hello. Thank you for having us, Doctor Reddy. We are just so excited to talk to you guys today. And thank you to the entire division of pediatric Urology at Cincinnati Children's for inviting us. We are so grateful for this opportunity to spread awareness and share knowledge about what it is that we do and how pelvic health PT can be a huge difference maker for kids with bowel and bladder dysfunction. As Doctor Eddie mentioned, I'm Sarah Fox, and I'm the founder and head of our pelvic health therapy team here at Cincinnati Children's, and my colleague Sarah Cooper is founder and head of her pelvic health team at CHOP. So, we would like to start by defining what it is that we actually do. Next slide, Sarah, sorry. Um, as physical therapists, we diagnose, manage movement disorders and dysfunction and enhance physical and functional abilities. We restore, maintain, and promote not only optimal physical function, but optimal wellness and fitness and quality of life as it relates to movement and health, and we absolutely prevent the onset symptoms and progress. Depression of impairments, functional limitations, and disabilities that may result from disease, disorders, conditions, or injuries. You can find therapists in a lot of different settings. So we're in inpatient rehab, we're in school settings, we are in birth to 3 early intervention settings, outpatient clinics, acute care, home health. So a lot of different settings that you can find therapy in. Now, Sarah and I have additional pelvic, pediatric pelvic health education beyond our doctorate degrees, and so do the members of our teams. And we hope our presentation encourages you to reach out to your own therapy department or local therapy clinic to inquire if they have pelvic health specialists or are interested in partnering to develop a program. Um, Ped's pelvic health is a relatively new field and there are not many programs in the world right now. So it's our hope that our talk today will plant a few more seeds for more programs to grow. Why should pelvical therapy be a part of your team? It's conservative. We're not prescribing medication. We're not conducting surgeries. It's extremely effective and we're gonna go over some of the data in a little later on. We're non-invasive. Both of our, my program here at Children's and Sarah's at CHOP conduct solely external assessments and interventions. There are some pediatric pelvic health PTs who Do internal work, so it's always best to know what your therapists do so you can answer family's questions and know ahead of time. But here at Cincinnati Children's and at CHOP, we both feel like we have had great success with external interventions only, which is really helpful for the kids as they undergo other testing, um, that their doctors and physicians prescribe. We take a full body approach, so we don't just look at the pelvis. As you know, many things connect to the pelvis, and that can affect its function. Therefore, we look at and assess the entire body. We look at mental aspects, environmental factors, so many things, and Sarah's gonna go over that in a little bit as well. Time and rapport. I think we are one of the providers who spends the most time with our patients. We might prescribe or recommend therapy once a week, uh, maybe twice a month. We spend up to 60 minutes each session with these kids. We have a lot of time to build trust and rapport with them, and that only leads to better outcomes for us. Our interventions are low risk, um, and we have pretty high success rates, so it can only help your program to achieve patient and family goals if you have a pelvic health therapy team as part of it. The two biggest predictors of success for therapy are patient readiness and caregiver readiness. So, if a child comes into our evaluation with goals of being able to attend their first sleepover without wetting the bed, maybe they want to play it in their soccer game without constant. Urine leaking. Maybe they want to get off their current medications for incontinence. Maybe they were bullied at school because they smelled like urine or feces. In all of these scenarios, the patient is motivated and ready to take the steps required to commit to therapy. It is a big commitment which we're gonna talk about. Caregiver readiness is the 2nd biggest predictor of success. So if a patient is ready, but their caregiver is not, that patient isn't going to be as successful because they're not gonna have that strong support system at home. There's a lot of barriers to success in therapy, transportation. If we recommend once a week therapy, but the family doesn't have a mode of transportation or a car, that's a huge barrier. How are they gonna get here to see us once a week? There are financial barriers, time off of work. Again, if we recommend once a week therapy. That family has to take time off of work probably to get to our appointments. At our institution, we have 7:00 a.m. appointments, we have 4, 50, and 6 p.m. appointments to help accommodate working families, but not all clinics have that, and those are hot slots, so they get filled really quickly. Commitment to therapy appointments that all we, this is everything we're talking about is goes into that behaviors. So maybe the family is on an enema regimen, and it takes all of their energy and all of the child's energy to get through that enema regimen in the evening, and they're exhausted, and they're uncomfortable, and they don't want to do their home program that their therapist provided. They don't have energy for that at the end of the day, so that's a huge barrier. School, we write a ton of letters to teachers and school staff to allow our kids to use the bathroom whenever they need to, to allow them to use a private bathroom if that's an option. Maybe the nurses' bathroom is an option. Um, of being able to have their water bottle on their desk is huge during the school day, um, and lack of buy-in from families. So, You know, maybe they've, maybe this is the 8th thing that they've tried. They were the 8th provider they've seen. They've been to a lot of different places, they've seen a lot of different um healthcare providers, and nothing is working, or they feel like nothing is working. And they get to us, why is this gonna work? They're skeptical for good reason. Um, so they have a lack of buy-in at the beginning, until they start to see the progress that they can make with therapy. I think it's safe to say that COVID has created more barriers than any of us had ever imagined, um, and a lot of clinics right now are not allowing siblings to attend appointments. How do families attend therapy once a week, a couple times a month, and they can't bring their other siblings, they're just not gonna come. So that's a huge barrier that is new, um, thanks to 2020. So I put this percentage in quotations because we don't, again, we don't have hard data on this yet. And as I mentioned before, there are many, there aren't many programs out there. Um, but if we're talking about Cincinnati Children's and just looked at the local patients who live close, who we eval, treat, and discharge, the majority of them meet their goals or meet a good portion of their goals and feel successful, you know, and CHOP does this as well. We evaluate kids from all over the world who come here for care and we provide our recommendations. But we obviously can't provide ongoing treatment due to geographic location and those cases aren't included in my percentage. Um, and overall, again, research is limited for this and Here are a few outcomes though from recent, from recent articles. Improving pelvic floor strength can improve fecal soiling in children, and we see that day in and day out in our clinic. That is so true. We see that with the majority of patients, um, and very happy that the research is supporting that now. Biofeedback on its own, it's not an effective treatment for pelvic floor disorders and it must be combined with some sort of Physical therapy treatment. And again, we also see that clinically day in and day out. We can't just hook them up to biofeedback and expect results. They need education, they need posture training, and Sarah will go over more of this later in our presentation, but there's a lot more that goes into it than just hooking up some electrodes and seeing what they look like on biofeedback. Initial neuro neurodynamics does nothing to predict the outcome of neurotherapy. So, it's interesting, when we first started our when I first started our program here at Cincinnati Children's, I, um, was mainly working with our colorectal department. And we decided as an outcome measure to use anal rectal manometry before my sessions and then after I had discharged the patient. What we found was there wasn't much of a difference on anorectal manometry pre and post, those bursts of sessions of therapy. So maybe it was 8, maybe it was 10, it looked a little different. Depending on the kid. Um. And, but they had met all their goals, and the families were happy, the children were happy, and everything was, was fine. So we discovered that that was not a good outcome measure. And so, similarly with the eurodynamics and predicting. The outcome of urotherapy. The next one is pelvic floor therapy can increase bladder capacity in patients with overactive bladder. That's wonderful news, um, and especially it's good to have it in research format. Behavioral interventions are often just as important in treating pelvic. Your lower urinary tract dysfunction as pelvic floor muscle therapy. And I touched on that earlier, you have to hit this from multiple angles, you can't just focus on one thing. Um, and biofeedback can tend to improve symptom scores much more than actual urodynamic scores in children, and we'll talk about, again, what biofeedback looks like for us a little bit later on. So going back to the point I made earlier that we as pelvic health PTs don't just look at the pelvis, we address the entire body, and this slide explains why. All the musculature in this diagram has to work and move as a unit to maintain the proper pressure system. There can be no dysfunction in this unit when we address your. Urinary and bowel issues. If there's a weak link, say the child has diastasis recti, maybe they have pelvic floor dysfunction or poor breathing patterns, the pressure system will be compromised. This weak link needs addressed in order to improve urinary and bowel issues, and so understanding the relationship is extremely important. OK, so our first question, I'll read it to you and then we're gonna actually move on to our next slide, um, while you're plugging in your answers. An 18 month old female patient presents to your clinic. This is the parent's first child, and they are unsure if they should be concerned that she isn't walking yet. What is the typical age a child is walking? A, 9 months, B, 12 months, C, 16 months, or D, 20 months? So in our evaluations, despite the age of the child, uh, presently, we ask families about achievement of gross motor skills back when they were infants. Why is that? Well, from 0 to 5 months, when infants are learning to lay on supine and grab their feet, they're learning to roll over, play in prone, push up on their forearms, push up on their hands. All of this is strengthening their strengthening their abdominal and trunk extensor musculature, and that helps develop the spinal curves. Fast forward to 6 months when they're learning to sit up, that's when the doming of the diaphragm takes place, and when they learn to crawl on hands and knees around 8 months, that's when the doming of the pelvic floor occurs. That's the development of the pressure system we talked about earlier. If a child skips crawling and progresses straight to walking, they miss those 3 to 4 months of critical pelvic floor formation and strengthening. So asking these questions in our avowal, even if the child is 89, 1015, that helps, helps us put the pieces together and helps us know where we need to start when we think about treatment for these kids. So let's go back to our question. Doctor Reddy, do we have results from that yet? Yes, so, um, the majority of people answered at 12 months. Great. Wonderful. That is correct. So 9 months is more of that crawling age, 12 months, technically, there's, there's windows, right, for, for every gross motor milestone. So 12 to 16 months is a normal window of time to achieve walking. If they present to you at 16 months or after, that's when we would want to, and they're not walking, that's when we would want to refer to, to physical therapy. Perfect. All right. So we just talked a great deal about all the elements that are required for continence, so let's talk about how we look at all this, um, during our evaluations. So we start with an extensive history with our patients. So we wanna go into their past medical. History, what are their current bowel and bladder habits, um, what medications are they on? Um, we also wanna talk about socially, what activities are they involved in? Are their bowel and bladder habits or their incontinence changing when they're doing these activities that they're, um, involved in? Also, uh, what is their home setup like? What is their school setup like? What is their access to bathrooms? Do they have difficulty accessing a bathroom that they can use at school, um, especially if there's someone that is self-cathing, do they need a private space versus, um, a stall bathroom? And those are all the things that we look at and we also wanna then collect self-reported questionnaires with that. So we use things such as the PINQ or the DBIS to really get an idea of where they feel like they are starting, so then we can continue to assess um where they feel like they are throughout our plan of care. And then when it comes to our exam, like Sarah discussed, there's a lot of elements. So we really do go through all the systems, um, and evaluate each system to see what the major impairments are and what we need to work on throughout our plan of care with them. We take all that we learned from that examination and we put that together with the family's needs. So as Sarah talked about, there's a lot of, um, obstacles when it comes to coming to PT. It's something that you need to be consistent with to be able to see that change. um, and to see the body change. So just as a thought, it takes about 6 to 8 weeks to see true muscle changes and changes in the muscle fiber to get strength changes. So that is an extensive time. So when we're looking at um how long we need to be involved in physical therapy, we're looking at months, possibly, not just weeks. And for some kids, it can even turn into years depending on how many impairments we find on their exam and what we need to work on and what age they are. Um, so we take that all into consideration when we're talking about the plan of care and really making something that's unique to every child and their needs and what's gonna work best for the family. Um, for example, I had one family that they were so good at doing what I recommended at home. Great, you don't need me quite as much. Come in every other week, get the updated exercises you need, and then go work your butts off at home, um, versus having to come in every week to see me. And then there's some family. in some kids that just take that skilled hand to really understand what exercises we want them to work on or what movements they want to do, and they need to come in a little bit more to be able to get that facilitation in those skilled hands. Um, so it's really a dynamic discussion, and it's also something that's fluid throughout their course of care. So we're always reassessing, is this plan working for this child? Are there any changes or changes in the obstacles that they have that we need to then. Just what we're doing. Um, I also want to point out, don't be surprised if a lot of your patients that you refer end up taking breaks from physical therapy. That does not mean they're done. It just means sometimes that they've reached a certain point in their progress where they've plateaued a little bit in the sense that what they're what exercises and recommendations they're doing right now is working for them, and they're not ready to move on to that next step, right? We're waiting for those muscles to get a little bit more strength. Work on what they're doing now, and then we have them come back to us when they're ready to progress to the next stage. So don't feel like even though we've discharged them for this short plan of care, that means we've discharged them completely from PT and we're not gonna recommend that they come back. Sometimes it's just, OK, take a month or two off, do these exercises, and then you'll be at the next stage and ready to progress later on, and you don't necessarily need us in between that time because we're not changing too much. Um, so I just wanted, I do wanna go into, oh my good. There we go. Um, I do wanna go into each system a little bit and what we really look at cause I really wanna emphasize, um, the extensiveness of our examinations and what we're looking at, um, so that way you guys have a better idea of when, uh, your patients come to us, um, how much, uh, we really go into things. So looking at it from a musculoskeletal standpoint, um, we're looking at strength. We wanna really look at symmetry of strength, OK? So we're looking at that from left to right. Are they symmetrical from side to side? That's gonna play a big role in their ability to maintain continence. Um, but we're also looking at symmetry of opposing muscle groups. Um, so the biggest example of this one I always think of, um, is quads versus glutes. Have you ever heard of the term quad dominant versus glute dominant. Um, so when someone is quad dominant or, you know, they're big, um, upper thigh muscles, that means when they're. Squatting down, they're running, they're jumping, their quads are doing most of their work, and their glutes are kind of hanging out, just taking a little bit of a nap and going along for the ride. Well, your glutes are a huge partner with your pelvic floor and really assist your pelvic floor. So if they're kind of just hanging out all day, they're not getting stronger, you're not using them. So it's that old term, you don't use it, you lose it. And so then that pelvic floor doesn't have their partner in crime. They don't have the glutes to kind of really help them out. So if we can change that in our patients and make them a little bit more glute dominant when they're just doing normal activities like running and jumping, then they're continuing to strengthen those muscles that can help their pelvic floor out and help maintain continence. Um, we also think of that when we think of the flexibility or the range of motions that our, our muscles have. Um, so the biggest example is tight hamstrings, so the back of your muscles. So if you have tight hamstrings, And that's connected to your pelvis, that can tilt your pelvis just a little bit. Um, even that little bit amount, it's almost like putting your, your pelvic floor on a boat. So now we're on the sailboat that's tilted and your pelvic floor is trying to do the best that they can to work. Um, it's just not the greatest environment to be sufficient in. Um, so we really wanna make sure that we're putting the pelvic floor at the right place in the, um, optimum place for it to work the best that it can. Our treatments are gonna vary from child to child, um, so you'll notice that we really cater to what our child's interests are and what their abilities are. Um, so it ranges from certain age groups that can include obstacle courses, animal walks, yoga, Pilates, um, I've even played basketball with some of my kids and, and gone through different sports activities. Um, it can include, as Sarah mentioned before, bio. Feedback, but really how we look at it a little bit differently and Sarah will kind of go in a little bit later of what we look at when we um prescribe, um, exercises is that we really take in consideration of what position are we training this muscle in, just like any other muscle, it's gonna work the best the way you train it. So what position are we training it in? What activities are we doing to help train it, um, are all the different things that we look at when we look at this system. Um, the next system we really look into is our neurological system. So looking at that coordination, so are they able to contract and relax that muscle when they want to? It's great if it has the strength, but can they really call on that muscle when they need to? And also, are they able to coordinate it with different muscles when they need to? So the, a great example of this is when you cough. So you need that diaphragm to really push that air out. You need your abdomen to tighten. And then you need your pelvic floor to work because otherwise you're leaking as you're coughing, which isn't a great thing. So you need all three of those muscles to work together. So are they able to coordinate that? It's great if all three of those things are strong separately, but if they're not working as a team, then you're not really gonna get the outcome that you want. Um, we also really look at proprioception or where do they have this awareness of where their body is in space. Um, so a great example, I like to think of our gymnasts and our dancers that come in, um, that have incontinence. So a lot of times these kiddos have, um, increased flexibility or hypermobility. So they don't really, as much as you think they would, they don't really know where their body is in space, unless it's in that end range. So if I have my elbow all the way extended, I get that hard end feel, and I'm like, yep, my elbows bent. Well, these kids get lost if we slightly bend a little bit. They have no idea where they are in space and how to use their body. Um, so that's really gonna play a role in what they're able to do. So that's something that we look at as well. And again, that treatment style, it's gonna be unique to every patient and really what the needs that they have, but those are all the things that we'll try to work on and in different activities. So we're training those things, um, the way that we want them to work in their daily routines. Um, from an integumentary, so we're really looking at scars here is our biggest thing from a physical therapy perspective. Where the scars are, how large they are, are they going across certain joints or certain muscles? So when you think of scar tissue, that scar tissue is really gonna bound down everything around it and not let the other soft tissue move and glide as it should, and therefore not allow the muscles to work as sufficiently as they should. Um, so with this, scar massage is a great technique to really get that tissue moving and make it more mobile along with stretching. Um, so if you think if you have a big scar down your abdomen, And there's not a lot of mobility in that. Your abs aren't gonna work the way that we really want them to and it'll be as strong as we want them to. So it's gonna make that more difficult on the pelvic floor. So we really wanna make sure that we're getting that movement out of those scars that we want. And you can actually get um increased mobility using scar massage up to a year after the scar was obtained. Um, so that's a, a big difference there. All right. Um, the other things we look at, as Sarah talked about, the diaphragm plays a huge role. Um, it's a huge partner with our pelvic floor. They really glide together. So when your diaphragm goes up, your pelvic floor contracts nicely. When your diaphragm goes down, your pelvic floor is really able to relax. Um, so we really want our kids to be more belly breathers or diaphragmatic breathers versus upper chest breathing. Um, and with this, It's gonna allow the pelvic floor then to naturally contract and relax throughout the day without having to sit there and really think about contracting and relaxing your pelvic floor. So we're getting pelvic floor exercises in just with breathing, which is really great for our little kids who don't really understand the concept of their pelvic floor yet. We can kind of sneak that breathing into, uh, to get that contraction and relaxation. Um, but again, like everything else, we really want to think of how are we training. Their belly breathing. We want to train it in different positions. We want sitting, we want standing, we want during activity. It's great if they can belly breathe while they're laying down on the table, but when they go to their dance class or gymnastics, are they back to upper chest breathing? And then it's not really useful. So being able to run and jump and do that belly breathing while they're doing that, it's then gonna carry over for what they're doing, um, throughout the rest of the day and be helpful. And then as Sarah, we talked about, development is a huge thing that we look at no matter what age they are. Um, so even when they're older, we're asking about that developmental history, and a lot of times I'll ask parents, not in the way of, oh, were they a late walker because most parents are like, no, they, they were about on time. So I always ask them, were they about on time, but like being a little A little bit late or maybe a little bit early, and they're always like, oh yeah, like they were a little bit early walker, but about on time and I'm like, great, so they didn't spend a lot of time crawling, Wonderful. Um, so we didn't really get the development of the pelvic floor and the obliques that we wanted, so that's where we may need to start from our treatment standpoint. Um, but big picture, we also want to look at the elements that you need. From a functional standpoint to go to the bathroom. So for someone, you have to walk there, you have to be able to take off your clothes, and you have to be able to transfer on and off the toilet. So for some of our kids, that's a 1520 minute ordeal, um, and sometimes needing the assistance of a caregiver. So if you think of that, when you get the urge to go. I, for example, I can make it to the bathroom in 2 minutes and be fine. So my pelvic floor doesn't really have to do too much work to get me there. Um, but for a kiddo that it takes 15 to 20 minutes, that pelvic floor is having to hold everything in for that 15 or 20 minutes until they're able to get to the toilet to void. So that's a much higher demand on their pelvic floor. So it's Kind of that strategy of how do we need to strengthen? Do we need to help them from a functional standpoint so they're able to get there faster. Sometimes just getting them to the bathroom faster solves the problem. We can cut that 20 minutes down to 5 minutes, that's a huge difference for them. Um, so that's something that we look at as physical therapists as well. So, as Sarah mentioned, as PTs we prescribe exercise. So, and um it has 5, we usually use 5 different parameters in order to do that. And doing the exercise correctly is most important and it's more important than doing lots of repetitions. Um, we want correct form always or else, what are we doing? We're probably treating the muscles to perform in a non-optimal way. So, 5 different parameters. So, um, you can't build a muscle without rest also is the point I wanted to make. You have to have ample rest time in between. And like Sarah said, we wanna change up the positions that these muscles are being trained in from supine to prone to sitting to standing. Um, so an example would be pelvic floor muscle long holds in seated, so that's our type. 5 2nd holds with a 12th rest, so duration and rest at 80% contraction, so there's our intensity. Repeat 10 times, rest for a minute, and do 3 times a day. So frequency, rest, and frequency. So there are some new interventions on the horizon that are really exciting. Intraception has been defined as like the eighth sense of the body. It's the sense of the internal state of the body. Um, it's important for maintaining homeostatic conditions and facilitating self-awareness. We think, uh, specifically, this intervention is going to be great and is great for our friends who also have EDS, hypermobility. Sarah had mentioned that before. They just don't know where those joints are, where their body is in space. Our buddies with sensory processing difficulties benefit from this interception training. Our friends with anxiety and ADHD and autism. Um, and we always refer to OT for this. They have more specialized training with this interception, um, than we do, so we refer to OT for that. Um, TENS has been proven or shown to improve stress incontinence. Um, it's shown to improve urine flow rates, decrease EMG lag time, and decreased PVR. Um, IFC interferential current to improve slow transit constipation, um, and I know that different institutions are using that as well. And then E-STEM to the peroneal nerve to, to improve overactive bladder, and I know Sarah, you guys are doing this. We're not quite doing it here. We're about to start doing it here at Children's, but you guys at CHOPP are doing that. Um, is there anything you wanna add about that intervention? Um, I will just say there, of course, with everything, there's not a ton of research out there on pediatric pelvic health, um, because, as Sarah mentioned, it's really something that's specialized, um, and really small with the number of providers that are doing it. So we don't have a ton of research on this. I would say our success rate at CHOP is probably about 50% really dependent. Upon the child. Um, so it's something that doesn't have a lot of backing behind it, but also it's not a huge risk to the family. So a lot of families that are at the end of their rope, they've tried 10 billion things. We've tried traditional physical therapy, so we always make sure that we're looking again at that full evaluation and if we're finding any impairments that we address them before we try. This, um, but at that point they're just like we're willing to do anything, um, so it, it's about 50% success rate, but I think most families are willing to give it those numbers and willing to give it a shot. Um, Sarah, if you don't mind, I did just want to add one thing to the previous slide, um, as we're discussing about exercise. I don't know if it's gonna. Um, there we go. Um, so I just also wanted to talk to you, uh, a little bit about the fact that we have to train muscles in different ways as well, thinking about muscle types. So you have two different types of muscle fiber. So you have your endurance muscles and your postural muscles, um, sorry, your endurance and postural muscles, but also your power strength muscles. Um, so thinking of that, I kind of think of it as you have your marathon runners and then you have your like weightlifters. Um, so the The pelvic floor is no different than that. So the most important thing, like, yes, it's great to be able to contract and relax a muscle, but does that muscle have the endurance to work the entire day? And also, does it have the strength of like, OK, I had to go to the bathroom 20 minutes ago, but here we are in our presentation, half hour in, like, is my pelvic floor going to be able to maintain this, um, and really have that power, um, that it needs to be able to hold it for that much longer for those like. Minimal times that we do that to ourselves. Um, so that's something that we think of. So a lot of people think when we think pelvic floor strengthening and biofeedback, it's like, great, just contract, relax, you know where your pelvic floor is, it's working, but really, can they hold it for 10 seconds? Can they do that 20 times in a row? Um, can they do it so powerful that you get a huge spike in their muscle activity? So those are the things that we're thinking about, not just with the pelvic floor, but other muscles as well. And really, again, training them the way that we want them to work in real life. Great, great points, exactly. So we've talked about who we are, what we do, but how do you know when to refer? So, honestly, anything on this slide warrants a referral to pelvic health PT. Um, concerns for developmental delay if a family has any concerns that they bring to you in, when they're in their appointment with you in clinic, if they have any type of urinary dysfunction, any type of bowel function, pain, really anywhere. Um, The bottom line is, even if you aren't sure, choose to refer versus not. Families will find benefit in our evaluation alone, and even if we don't recommend treatment, they will learn a few things that will help improve their situation. So it's always best to refer as long as the family's on board. All right. So taking into consideration everything you guys just learned about pelvic floor physical therapy, we're gonna look at a specific patient population now. So looking at our bladder atrophy patients and how they may benefit from our services. Um, so here at CHPP we began getting referred, um, these patients began getting referred About at that like 7 to 9 year age group, so right when continence really played a role socially, so it was really a problem when it came to sleepovers, camps, or sports activities. Um, so we started looking at these patients and saying, OK, what common impairments are we seeing, um, with this specific patient group. And we started recognizing that, OK, when did these originate? Because they're not coming about when they're 7 or 9 years old when we're worried about incontinence. They're really coming earlier on. So we thought about the general population when you have an intensive invasive surgery and especially one that includes orthopedics, um, you see a huge Huge loss of strength and range of motion and mobility just after surgery. And with that general population, they really benefit from early rehabilitation. So why should that be any different with this patient population, we thought. So we started seeing these kids um soon after their surgeries, and we are seeing these impairments, and we're able to start working on them sooner. And hopefully that will help them um reach their end goals a little bit faster. Um, but we also then started thinking, did all these impairments originate from the surgery or did they even come before then? So thinking of structurally, uh, what these kids look like and, and no, not all these impairments came just from the surgery and even beforehand. So Then we start wanting to see these kids even sooner, even before surgery, cause we know the stronger and more functional you are before surgery, the better your outcome will be. Um, so that's really how we looked at it, um, from CHOP and, and what we, um, kind of the progression that we went through with these kids. Um, So looking into them a little bit more, we've evaluated a total of 47 children here at CHOP thus far. Um, and with this data that I'm gonna present in a minute, we're really looking at kids that we saw post-op, so none of these are, are speaking of, um, them preoperatively, and it varies in time, unfortunately. Like I said, we kind of started seeing some of these kids at 7 and 9. Then we realized we need to see them sooner. So some of the kids we got to see sooner, um, so it really varies with time, so it's hard to put that, um, in perspective when we talk about the data. But the patterns that we're seeing, we saw 77% of them presented with significant decrease in their hip strength. Of those 77%, 22% Had asymmetrical strength, meaning their left or their right was stronger than the other side, and as we talked about that plays a huge role incontinence. Um, we also noted that 76% of them scored below the 50th percentile in a standardized gross motor test. Um, now, When I get asked the question of, well, why weren't these kids referred to PT early on in their life if they have so much dysfunction? Um, why were they being missed by pediatricians or other PTs that may have evaluated them at one point. Um, and the thing I, I talk about most is, A, it was that perception of, well, you have bladder atrophy and you had this Major surgery, so you're gonna be delayed. Don't worry about it. You'll catch up eventually like we expect you to be delayed, um, with sometimes the thought process of some of the providers. And the other thought process from a PT perspective was, OK, like, are you meeting your developmental milestones? Great. And yes, Sarah and I talk a lot about the quality of it, but you really have to think. Of that quality from a pelvic health perspective, which not a lot of therapists are able to do, um, which is why we usually recommend these evaluations occur with a pelvic health therapist initially cause we're able to say like, oh yes, you can grab your toes and you can grab your feet. That's a great milestone check. But Sarah and I are looking at it as, well, you're just You know, your hips are so far out that you can frog legg it to grab your feet, versus activating your, your core strength in your abdomen to be able to rotate your pelvis up. So all these kids are never using their core to grab their toes, but everyone's like, oh, check mark, you made it. Um, So, that's how we look at it very differently from a pelvic health perspective because we know they're gonna need that core strength later on in life for their continence. Um, we also noted again, 67% um presented with that impaired core strength. Um, so unfortunately I don't have any data on how PT help these kids. Um, again, Sarah talked about here at CHPP we spend a lot of time evaluating kids that live far away, so we usually get that initial evaluation and then we recommend PT and they go. To a local therapist. Um, I have spent countless hours talking to local therapists about what bladder atrophy is, what things you wanna look at from a pelvic health perspective, but unfortunately, I'm just not involved in the day to day treatment as much as I wish I could. Um, so we are seeing these kids. When they follow up with urology, a lot of the times and they're coming back into the state, so it takes a lot to really get that data, um, especially when it took us a little bit of time to perfect when we were gonna recommend services. Um, so we're still in that process, but hopefully that means more to come for the future. Um, but I can talk about one patient in particular. Um, she came to me actually prior to her surgery, um, for epispadius, um, and before her bilateral osteotomies. So we were able to get in a little bit of, um, pelvic health strengthening and just generalized strengthening before her surgery. Her family was great about doing exercises at home. Um, so prior to her surgery, I tested her overall strength at about 4+ out of 5 throughout her hips. Um, so I know that does not mean much to you guys from a manual muscle perspective. However, what it means is that she was able to lift her limb against gravity completely and be able to hold it against moderate resistance as I was pushing on her. So she had pretty good strength going on throughout her hips. Um, Then she had surgery, again, bilateral osteotomies. I saw her six weeks postoperatively, which is when she was allowed to weight bear again. And I retested her strength. She was at a 3 out of 5. So just in general, it goes 3 minus 3, 3+, and so on for the numbers up to 5. Um, so she jumped from a 4+ to a minus, meaning that she was no longer allowed to lift her limb against gravity, the full range. She was able to go a little bit halfway, but couldn't quite go anymore, and I was not even able to press on her at all. Um, so she had a significant decrease in her strength. She also tested at about 16% from a gross motor standpoint on a standardized exam. That was about 10 weeks after post-op, and the reason there was that 4 week lag is just because she wasn't allowed to run and jump, which were some of the items in the test, so we had to hold off on doing that. But she was pretty significant. delayed in that 16% range. So we went through a 10-week course of physical therapy. She came to me one time a week. The family lived about 45 minutes away, but like I said, they were excellent at their carryover at home and did all the exercises I recommended and really just came back to reassess where she was and what new exercises she needed to do. Um, and after that 10-week course, I sent her home for a month cause she kinda hit that plateau like we talked about and all of her exercises remained appropriate. So I said, go home, do these for a month, and then come back to me. So we are now 5 months post-op. At that 5-month mark, I retested her. She was a minus to a 4+ out throughout her hips. So that means some of her muscles hit that baseline that she was at um before she had surgery. Some were lagging behind a little bit, but able to move through full range and take on some resistance. So she was getting there, um, and she was doing really well with that. Um, we retested her from a gross motor function standpoint, and she Tested within the 28th percentile, so she went from 16 to 28 in 5 months, which is a great, um, gain for her. And then just talking to parents, they were telling me her walking looks so much better. She's doing so much better functionally at home. She's able to keep up with her brother and her friends from an endurance standpoint. She's not getting tired like she was, um, initially, and she's able to keep up with. The run, jump, not fall, um, more than they would. And she will tell you her biggest accomplishment is reaching the top of the rock wall that she got to climb. Um, so that was a huge goal for her. She really struggled with that. You saw her poor little leg shaking, um, and her goal was to make it all the way to the top, and she was able to accomplish that. I won't tell you what my heart rate was at when she was doing that, because at one point she asked me to go with her, and I think I turned pale. So good for her. I was there to cheer her on and give her some tips, but I was not going up that wall myself. Um, so I give her a major amount of credit for that one, being that little, so she did an excellent job. So that's just kind of like just in terms of, you know, we're not talking continence at this point, but just looking at her from a functional standpoint, she did so much better, so much more quickly with the help of physical therapy and, and those exercises. Um. So what does that mean when we look at our bladder atrophy population? Although, again, we don't have that full amount of data, we'd really like to prove what we're doing is helpful for these patients. Um, we wanna be able to get there, and we have that knowledge from other diagnoses and other populations that we work with that we can hypothesize that it will help them. Um, so we'd love to see them before they have these major surgeries with enough time in order to get that strengthening that we need for any of those impairments that we recognized prior to surgery. We also want to see them immediately post-op as soon as we can. That 6 to 8 weeks period is typically when there's been enough tissue healing. Um, and then also they can progress from, um, a weight-bearing orthopedic standpoint and don't have too many precautions that we can really start working on some things. Um, and then after that, thinking of these patients as they develop, depending on what age we start seeing them at, they're going through a great number of milestones. So especially our young kiddos that are going from walking to running to jumping, to skipping to hopping. Um, they're hitting all these great milestones that we want to make sure that they're hitting correctly and they're using the right muscles that they should be as they're going through that. Um, and as our older kids too, their bodies are changing. They're, you know, some of them are gaining a little bit of weight, some of them are growing taller. Like how is that affecting their body and the way it moves and what their muscles are doing is something that we need to continue to evaluate. Um, and like I said, it really It takes for these kids, a pelvic health therapist eye for that, which is why we recommend it doesn't necessarily mean their treatment has to be done with a pelvic health therapist. We can most certainly help walk them through that if they need to see a local PT and they don't have access to a pelvic health therapist. Um, but ideally, the evaluation occurs with a pelvic health therapist just so we can really identify what impairments we need to work on. Um, And at any point in time, an episode of care can be recommended, or as simple as just giving them a home exercise program. I've done that before when they come in, they're evaluated by us of here, work on these exercises for the next 2 months, um, and then you'll be all set for surgery. So it's not always necessarily that they have to come in once a week. Um, so that's a discussion to have with them too. All right. Um, so we'll kind of finish up our presentation with this last question, um, for our poll. So you evaluate a 6-year-old female with a history of stress incontinence. She's having success staying dry, using a potty wash that signals to void every 2 hours. Family is happy with her progress, and she is independent with toiling. Do you refer to PT? A, yes, B, no, or C, I need more information. Um, and then I think while we're waiting for the results, we can always open it up to any questions or comments as well. Thank you so much, Sarah, and Sarah, that was a phenomenal lecture. We do have a couple of questions from the audience. So, um, Agnes from Saint Louis is asking, is, is there any data either on the uroflow studies or EMG of the pelvic floor that helps you actually make a diagnosis of how dysfunctional the pelvic floor is? Yeah, so the difficult, I always get asked that about um the EMG or the pelvic floor. So the difficult part about that, so, um, from a pediatric perspective, we're using external sensors when we do our biofeedback. Um, so if you think of the number of muscles those external sensors are going through, it's quite a few, so it's not always really isolated to the pelvic. Floor and as well, it's kind of user error sometimes of if the stickers are slightly closer together or slightly further away, sometimes you get different measurements. So there's really not a standardized way to measure the strength of the pelvic floor except internally, um, which is usually not recommended with pediatrics except in some rare cases. Um, so that's not something that we really We collect data on or have, it's more than um what the patient reported outcome measures are and how they're doing from more of uh a functional perspective. Um, so a lot of kids will tell me how much they leaking has reduced or the frequency of their leaking has reduced, and we kind of use that to be able to tell what the pelvic floor is doing. Thank you. And another question was, um, just like we have a, a subset of patients with, uh, bladder atrophy where you've created this very unique program, any, uh, experience or any data out there about similar programs with patients with neurogenic bladder and bladder dysfunction from spina bifida? That's a, that's a great question. Um, something that we are diving into a little bit here at CHP, um, so we have some great OTs that even before we really got our pelvic health, um, program going here, we're trying to come up with independent ways of, uh, patients cathing and, um, giving themselves enemas, um, and actually designed, uh, a toilet that can Hold the cath or the enema and position it correctly so that way depending on their functional ability from their upper extremity, it can help them self-cath um or provide an enema without needing assistance. Um, but we haven't really dived into it too much, um, from a muscular standpoint of pelvic health. I'm starting to work with our therapists that are our spina bifida clinic, um, and talking about some things that can help, um. Abdominal massage that can help the bowels get going or anything that we can do from a PT perspective, um, like we've been talking about, there's not a huge amount of data, so it's kind of trial and error what we're doing and what we find working and working with the medical teams and our, our physical therapists that are in those clinics, um, but there's no program out there that I know of unless Sarah, you know of one that I'm, I'm not sure of that works in that population, but, um. I, I think a lot of the pelvic health programs in pediatrics that are starting, start out with the basics. So kind of what we did at CHOP, it was like, you know, work with the stress and the urge incontinence and kind of uh the basic patients. Um, we both work at two major institutions that see the rarest of the rare. Um, so I feel like we are Kind of on the forefront of what patient populations the pelvic health pediatric pelvic health community is working with. Um, so if you guys hear of any, I'd love to get in touch with those therapists, but none that I know of. Sure. Another question that just came in is, um, again, I'm not sure of the context, but it was, uh, is there, uh, why is there a hip strength asymmetry in some of these patients? That's a great question and a problem we have been trying to figure out for some time. We weren't sure if it had something to do, um, with the range of motion. Is one side, um, a little bit different than the other in terms of their hip joint, um, and how much it's able to move. Um, something we're talking to our orthopedic surgeon on and seeing if we can figure out if it's, sometimes I find, um, they're talking like SI joint, one side is slightly more Pressed than the other before they do surgery. So is that something that's playing a factor in their strength? Um, we really don't know. We just know it's also a problem that we need to fix. So that's something that we work on and a lot of our kids do really well once we give parents strategies on how to encourage the other leg to work a little bit harder, um, but just something to have in the back of our mind as well. Um, so when we're evaluating, we're always looking for that, and we know it's prevalent in our bladder atrophy patients, so we always have our eyes out for that. Thank you. So the, uh, poll answer, um, the majority of people answered that they needed more information. Great. And now I wish we had a poll for what more information do you need, um. I think the, the major um components Sarah and I had kind of discussed, and Sarah, you can jump into this, of we talked a little bit about the readiness of the patient and the parents, um, and first thinking like what are the, what would the goals of PT be? Well, say she didn't want to have to use a watch in order to stay dry, and that was something she didn't want to do. One kid told me the other day that all the kids at school know the brand of the watch that urology patients use, so they know if you have that brand that you have incontinence issues, and they get made fun of. And I was like, like, oh my gosh, so now the kid doesn't want to wear his watch because all the kids know why he has the watch. So that might be a, a, a goal for this patient. Um. Or is it that both patient and parent are so tired of talking about their incontinence that they're just really happy where they are and they don't want anything to change, and they just wanna take a break from everything. Um, the other things to consider, is she on medication to help with this as well? Is that something that the parents I would like her to wean off, or is it something from a medical standpoint that we have concerns of what side effects um she's getting from that or how long she is on it. So all the components that you can kind of think of and Sarah, I don't know if you can jump in with any more as well. No, yeah, I think you, I think you covered it all, absolutely. Well, thank you so much. 01 more question here, and that is, um, Can we talk about um access, right? So one of the questions is from the audience is, um, what have, what have the different institutions done, so speaking for our two institutions done to increase access to the physical therapy programs for either underinsured individuals or people who don't have access to such programs? Yeah, that's a great question. I mean, I know that if family, when families come here, um, we treat them no matter what. They get the care that they need. Um, it's not like that in all places. It's not like that in all clinics. Um, again, Sarah mentioned she, as well as I, we spend countless hours on phones with local therapists, um, in places where people live to kind of help walk them through some things to work on to target more pelvic floor, pelvic health PT, um. It's it's, it's really tough. It's definitely tough. It's a, it's a huge barrier to our care for sure. Sarah, do you have anything else that you Wanna add? Yeah, and I think just working with the families the best that we can if it's something where, you know, we are the only way they have access to care, but they live so far away they can't follow up, I think. As many um downsides we've had when it comes to COVID. The upside is that we're able to provide telehealth and we're able to do video visits. Um, so that's something that I've done with a few of my kids that are further away that wasn't always something we could do from a physical therapy perspective and may go away once the pandemic is over. We're hoping not. We're hoping to collect data to show it, it provides great care and Opportunities for patients that don't have access to it otherwise. Um, but that's something that I've offered, OK, let's check in once a month and we'll go over exercises and things that we can do. So really try, trying to look at different avenues that we could provide care as well. I think, um, both of us always look at two of, of what education can we provide outside of this institution. So a big thing I think, um, at least one of my goals. Is reaching out to our dance instructors and our gymnastic instructors and being like, incontinence is highly prevalent in your athletes. Um, I think, I don't want to say the wrong number, but I think it was about 40% of gymnasts, um, experience some form of incontinence. Um, and it's OK, you have it, I have it, great, like it's normal. But it's something, yes, people have that your peers have, but it's something that can be fixed as well. And I think providing that education of how to provide proper strength training outside of your sport and proper, um, stretching outside of your sport can prevent some of those issues possibly, um, and decrease those numbers without even having to go to physical therapist. So if we can kind of catch them at the source of the problem, are we able to then minimize or even need for access of care? Perfect. Now, the tel access to telemedicine is definitely been one of the silver linings of COVID, and we all hope that it does stay because it's definitely taken down barriers to access. Uh, another follow-up question was about the utility of, uh, pelvic floor physical therapy and the treatment of giggle incontinence. Yes, um, So another one that doesn't have a lot of backing of research, again, I think the numbers are like 60/40 or 50/50 of who really benefits from that. So of course, we know that kind of is originating from the brain so much, but we go back to that coordination piece of great, if we're able to give them the strength they need in their pelvic floor, and they're able to coordinate it properly, are we able to, as soon as they feel that leak or As soon as they know they're about to belly laugh, can we get them to activate their pelvic floor to prevent that leaking? So we may not be able to decrease what their, um, smooth muscle is doing to their bladder to contract their bladder, but can we prevent that and almost like turn the faucet off so no water can come out, um, perspective. So that's something that we work with, with our patients of getting that coordination piece down and being able to activate it, um, before they leak or as soon as they feel it to minimize the effects of it. Well, thank you so much both Sarah and Sarah. Um, you've educated us incredibly about the importance of pelvic floor therapy and also the programs that are out there, and I welcome the audience members to reach out to you if they have any other questions. We're gonna bring this session to a close, so big round of applause. Thanks for having us so much. No, we've enjoyed having you and, uh, thank you for your partnership. We're now gonna take a bio break cause, uh, you know, we wanna take care of your pelvic floor and make sure that we're not having any content episodes. So, this is a bio break. Um, during the bio break, we will have people in the social lounge and in the private chat rooms. If you wanna, uh, have any other questions to engage with our presenters, that's an opportunity. So please visit the social lounge, and we have, uh, people in the private chat rooms. Those are all video links, so you'll be able to see and talk to each other too. So, uh, great job, everyone, so far, and, uh, more to come. Thank you.