Episode 3: Cerebral Palsy Health. Amy Bailes, PhD, PT, PCS: ABC's of CP

Episode 3: Cerebral Palsy Health. Amy Bailes, PhD, PT, PCS: ABC's of CP

About this Episode
Photo of Jennifer Lyman and her son with the copy Cerebral Palsy Health by Jennifer Lyman across to the top of the image

On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP’s physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis  and family-centered shared decision making.

Dr. Bailes PT, PhD, PCS is a physical therapist at Cincinnati Children’s Hospital and an Assistant Professor in the Department of Rehabilitation Sciences at the University of Cincinnati. Dr. Bailes has more than 30 years of pediatric clinical experience and has been recognized by the APTA as a Pediatric Clinical Specialist since 1993. She began her career at Boston Children’s Hospital, moved to Los Angeles and worked at Children’s Hospital Los Angeles and has been at Cincinnati Children’s for 25 years. Her clinical practice focuses primarily on the care of children with cerebral palsy (CP) and other neurodevelopmental disorders. She also serves on the executive leadership committee of the Cerebral Palsy Research Network. With doctoral training in clinical epidemiology, her area of research focus includes health services and quality improvement with a particular emphasis on physical therapy intervention for individuals with CP.


Jen Lyman (00:00): Welcome to Cerebral Palsy Health. On today's episode, we'll be talking with Dr. Amy Bailes about the gross motor functional classification system, the GMFCS, and the gross motor functional measure, the GMFM, and its corresponding motor curves. In my opinion, the GMFCS is a hugely important classification system that is relatively easy to understand, and it helps create a shared language and framework for understanding a person with cerebral palsy's physical function, which can be really helpful for parents, patients, families, and providers of all sorts, especially as it relates to both the acceptance and understanding of the diagnosis and family-centered shared decision making. So let's get on with it, I hope you enjoy the show.

Jen Lyman (00:49): Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that can be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics, and try to shed light on how best to maximize and optimize health, participation, and quality of life for those with cerebral palsy.

Jen Lyman (01:26): Dr. Bailes is a physical therapist at Cincinnati Children's Hospital, and an assistant professor in the department of rehabilitation sciences at the University of Cincinnati. Dr. Bailes has more than 30 years of pediatric clinical experience, and has been recognized by the APTA as a pediatric clinical specialist since 1993. She began her career at Boston's Children's Hospital, then moved to Los Angeles and worked at Children's Hospital Los Angeles, and has been at Cincinnati Children's for 25 years now. Her clinical practice focuses primarily on the care of children with cerebral palsy and other neurodevelopmental disorders. With doctoral training in clinical epidemiology, her area of research focus includes health services and quality improvement, with a particular emphasis on physical therapy intervention for individuals with cerebral palsy. Dr. Bailes also serves on the executive committee and investigator committee of the Cerebral Palsy Research Network.

Jen Lyman (02:17): I've known Amy for about five years now and I've had the honor of working with her on research studies that we'll talk about today, as well as presenting with her at a couple conferences where she got to play the host and have questions for me. So I'm really looking forward to flipping the script today. Welcome, Amy.

Dr. Amy Bailes (02:32): Thank you. Thank you for having me. I'm so happy to share this information with you and your listeners.

Jen Lyman (02:38): Thank you. Well I'm thrilled to have you. I love hearing your voice, and I think it cracks me up that you always herd the cats around here so it was fun to herd you in and reel you in to get you on the show. I'm going to start with a personal question. How did you get into this? How did you decide to become a physical therapist and a cerebral palsy researcher?

Dr. Amy Bailes (02:57): I became interested in physical therapy and cerebral palsy at a very young age. I was actually babysitting for a family when I was 13 and their second child was a baby, and I didn't know much about how babies developed or how babies with cerebral palsy develop, but I felt that something wasn't quite right. And eventually the family did tell me that the baby did have a significant brain injury and that he had cerebral palsy. And this was many, many years ago, so this was probably in the late 1970s. That particular family did a program of therapy called Doman-Delacato, or patterning, and I actually was a patterner for them.

Jen Lyman (03:37): Wow.

Dr. Amy Bailes (03:38): I was always very interested in the brain and science beforehand, and then after this experience the family would let me read their medical record and imaging results and things, and being a patterner, that's when I decided that that's what I was going to do.

Jen Lyman (03:54): Wow, that's fascinating. You're the first person I've ever talked to that was a patterner for Doman-Delacato.

Dr. Amy Bailes (03:59): I like to say that I've been studying dose for many, many years. That's a very good example of physical therapy dose of whether or not it's... What the ingredients consist of. I was very lucky that I've always had a passion for this.

Jen Lyman (04:13): Wow. Well how is that child now?

Dr. Amy Bailes (04:16): They did move away, so I have not remained in contact with them. I think about them a lot and I have sent messages through other relatives that if they should see that family that they should tell them that I say hello and that this is what I'm doing.

Jen Lyman (04:30): Aww, well thank you for sharing. It goes to kind of further something that I've found in this field that so many of you guys have a personal connection and personal passion about working with cerebral palsy because of the experiences you had early on. It just reminds me of why you guys are always so empathetic and passionate about your work. So I'm amazed, thank you, thanks for sharing. So let's get to the nitty gritty. I really want to help our listeners understand more about the GMFCS, as I think you heard me mention in the intro, because I do think it's a tremendously helpful tool. And so why don't we just start with telling the audience what it is, how it was developed, a little bit of the history, and then we can go onto how it's used from there.

Dr. Amy Bailes (05:15): Sure. So like I said, I've been a physical therapist since 1985 actually, is when I got my entry level degree, which was a bachelor's in physical therapy. And at the time, when you worked with kids with cerebral palsy, or professionals and other people, or when it was described to families, often you would hear the clinician or the provider say that your child has mild cerebral palsy, moderate cerebral palsy, or severe cerebral palsy. And as you know, what's mild to you might not have been mild to me, and is a very poor way of explaining or describing someone's abilities that has cerebral palsy. So in the GMFCS, so the gross motor function classification system as you said, was developed in 1997 by researchers in Canada in order to better describe different levels of motor function in cerebral palsy. It's very widely recognized and it's used to categorize motor function, only motor function. There's other systems to categorize manual or hand function and communication. But this just, the gross motor function classification system, only is used to categorize motor function, and it can be used to guide treatment and to help people make decisions about what treatments to pursue.

Dr. Amy Bailes (06:29): Now all the professionals and all the clinicians using it, hopefully using it, it is used very widely by clinicians and people treating children with CP, but we've found, and I've often wondered, what families knew about it and felt that there were a lot of barriers to sharing this information with families in my setting. So that's how it started. In Canada, what they did is they studied over 600 children over time, with an accompanying measure called the gross motor function measure that you talked about. The gross motor function measure actually is an assessment tool where you administer items to a child. Based on the scores on that, that is how they were able to develop these levels, based on how over 600 children kind of filtered out into different functional abilities. So they complement one another but the gross motor function classification system is really just meant to categorize people, it's not meant to measure change in people with cerebral palsy.

Jen Lyman (07:27): It would not be an outcome of a research study, so you're-

Dr. Amy Bailes (07:31): Correct.

Jen Lyman (07:32):  Okay.

Dr. Amy Bailes (07:33): So you're not going to use that and say, "Oh let's do this intervention and see if I can change my gross motor function classification level." It was never meant to be that, it was always meant to categorize and better understand. However, its complimentary measure, the gross motor function measure, is actually meant to measure change and be used as an outcome measure.

Jen Lyman (07:54): Got it. So as far as the gross motor functional classification system goes, there's five levels, and my understanding is that one is somebody who is least impacted. It goes from one to five, and one being less impacted versus five being more impacted. So this idea that you were saying, somebody saying somebody's not severe or what that means. So can you kind of go into what each level actually is? What one, two, three, four, and five are. And we'll also... In the show notes for our listeners, I will have resources available so you could click on the photos and click on the actual websites that include the gross motor functional classification system and the corresponding visuals for that.

Dr. Amy Bailes (08:49): Okay, so like you said Jen, people that are classified at level one have the highest functional abilities, even though the one number is the lowest number, that is confusing. People classified at level one can walk independently and may have some restrictions and balance coordination high level skills. Individuals that are functioning at level two also walk independently but they will have some other more impairments or more problems with balance, coordination, and generally it's thought that they use a hand rail to go up and down stairs, whereas those at level one do not need a hand rail to go up and down stairs.

Dr. Amy Bailes (09:26): Individuals at level three have a variety of ways of getting around. They can walk with an assisted device, but that assisted device has to be something that they hold with their hands. So it can be a walker that they hold with their hands, or crutches, or canes. But a walker that provides more postural support like a gait trainer that has a seat or trunk support, that the individual can't really hold with their hands, that person would be better classified at level four. Those at level three, let me go back to those for a second, also as they get older might use a wheelchair for longer distances. So kids at level three have the largest variety of ways of getting around.

Jen Lyman (10:06): Got it.

Dr. Amy Bailes (10:07): And then four, like I said might use a postural control walker and a wheelchair. And then those at level five really have difficulty having any postural control against gravity, so they would always be using a wheelchair. Now what's important to know about the levels is, the people that developed it, they have specific descriptions based on the age of the children. When I'm seeing a child and trying to assign a classification level, I always look at the specific descriptions for their age level, and those are two to four, four to six, six to 12, and 12 to 18, because what a person that would be described as a level three might look like when they're eight, they still would be considered a level three when they're 17 but their skills have changed because they've aged. So I think it's really important to look at the age bands. Did that answer your question?

Jen Lyman (10:58): Yes, it did, it absolutely did. And when people look up the gross motor functional classification system online, I think it's referred to as, I think it's the expanded edition.

Dr. Amy Bailes (11:10): I don't know if I mentioned, it was first developed in 2007 for kids that were up to 12 years of age.

Jen Lyman (11:16): 1997 I believe.

Dr. Amy Bailes (11:17): 1997.

Jen Lyman (11:18): Yep.

Dr. Amy Bailes (11:18): And then in 2007, they expanded and revised it to go all the way up to 18, so that is what everybody uses now, the expanded and revised edition, and I think that's important that everybody use that one.

Jen Lyman (11:31): Got it, and when we refer to the GMFCS, that's what we're referring to, the expanded and revised edition.

Dr. Amy Bailes (11:39): And sometimes you'll see that as GMFCS-E&R.

Jen Lyman (11:42): Exactly, exactly, thank you for clarifying that. Two clarifications I think for the purposes of this podcast, is that when we talk about a lower level versus a higher level, lower actually means a higher level of functioning, versus a higher level means a lower level of functioning. So that would mean the fives, who pretty much always use a wheelchair, always need support against gravity, versus a one who is an independent walker. And then also the E&R, the GMFCS-E&R. When we say GMFCS, we just mean E&R too, so including that together.

Jen Lyman (12:19): So with regard to the five levels, I've got a couple questions about it. So within cerebral palsy we have lots of different types of CP. So we talked about quadriplegia, or hemiplegia, or unilateral and bilateral. Can somebody be... And I thought about this in the middle of the night last night. I was like, "Well can somebody be a quadriplegic but be a level one?" So can you have all four limbs impacted or do you call that... I call that quadriplegia, I think these days some of the terminology is changing so that they now call that bilateral CP. So could you clarify that for me a little bit too? I think families could really... It's confusing.

Dr. Amy Bailes (13:04): That is a really good question. Well the way I usually explain it to PT students is that there are several ways to classify or describe cerebral palsy. One way is by what parts of their body are involved, or topography. So that would be quadriplegia all four limbs, diplegia just legs, hemiplegia just one side, and again you mentioned that the terms are changing more to bilateral, unilateral symmetric, bilateral asymmetric. So that's one way, another way is by the movement disorder, the type of movement disorder which would be spasticity, dystonia, and hypotonia. And then another way is using this gross motor functional classification system, which is the most reliable way and the most widely used way, by the way. But yes, your question could somebody be described as somebody that has quadriplegia all four limbs involved and walk independently and be classified as a level one? And the answer to that is yes, but the majority of people that would be described as having quadriplegia would not be GMFSC one.

Dr. Amy Bailes (14:15): I will refer your listeners to a Novak article, I believe it's the one that's in Journal of Child Neurology. It has a terrific pie graph that kind of breaks it down to how many percentages are quadriplegia in level one, how many... Most people level one are hemiplegia or diplegia, how many are different things. So I don't know if you're familiar with that and I don't have it front of me, otherwise I'd give you parts-

Jen Lyman (14:43): I will absolutely put it on the share notes, and actually Dr. Novak is going to be my next guest.

Dr. Amy Bailes (14:48): Oh, yeah so ask her that question. Thank you.

Jen Lyman (14:53): She'll be on the next podcast.

Dr. Amy Bailes (14:54): That's a great question and I think a lot of parents probably wonder about that.

Jen Lyman (14:58): I will definitely add that to my list of questions for her. So as far as changing over time, once somebody is classified as a GMFCS level one, or two, three, four, or five, is that something that you're stuck with? Even the reliability, if a parent sees their child as a GMFCS three and then therapists see it as a level four... So I guess I'm asking two questions here. How reliable is it between parents and doctors or therapists, and then also does it change over time? Maybe answer one at a time.

Dr. Amy Bailes (15:36): And actually I'm going to back up just a bit, so sort of back up to half of that first question. So for example, one thing... I just want to give an example of how knowing or understanding GMFCS can help you with knowing what you need to watch for, knowing what to plan for, what kind of goals to set, and that sort of thing. So let me give an example, so kids that are classified at a higher number, which would be four and five, but would have more severe or more functional limitations, they're more at risk of having hip displacements and hip dislocations. So we know from an early age, and the GMFCS, even though they have descriptions for kids that are under two it's not as reliable, so they recommend you don't rely on the classification until age two, and even then you should frequently re-classify because as you mentioned, younger children are more likely to change levels and we'll go into that.

Dr. Amy Bailes (16:34): But knowing that you have somebody might be described as GMFCS four, we would know that we need to do hip x-rays more often and maybe do some positional equipment types of things to preserve hip integrity, and standing, and things like that. So when you're stuck with a level, I think that the level can give you some helpful information as far as what you should be working on and planning for. Now that being said, when the GMFCS was first being developed, it was described and tested, and it was shown to be stable, meaning that it doesn't change over time. And this was back, like I said, in the '90s and early 2000s when Botox was just starting and we weren't looking at other interventions that maybe are done more often, single event multi-level surgery, rhizotomies were being done, but baclofen pumps. So this was just typical treatment.

Dr. Amy Bailes (17:27): People have become very interested in if children change, who are those children that change levels? So I did make sure to review some current literature so that we could talk about that today, because I think it does come up a lot. And basically the levels, one thing to know about the levels is that they're not meant to be like the distance between a one and two is the same as the distance between a two and three, and a three and a four, this isn't like a rule. So that's important to know when you're talking about anything like this type of a tool. So there are a couple recent articles that you also might want to post for your listeners. One is by Robert Palisano, 2018, and one is by a group in Sweden from 2017. So in the 2017 article, they looked at over 700 children between the ages of about four to 15, and they rated those kids several times on the GMFCS to see how many people change levels. In their sample, 56% of the children received the same rating at all times, and 44% changed levels at least once.

Dr. Amy Bailes (18:36): The kids that were more likely to change were the twos and threes, and they were more likely to have a higher performance or the lower number, like move up to a one or two type of level. And then the kids that changed the least frequently were those with hemiplegia or unilateral spastic. But I think what's really interesting to see in their study, 11% of their study had higher function or a lower number, and 15% had lower function or higher number, so it goes both ways. Very infrequently, like I think in this study 2% and in another study I'll talk about it's only 1%, changed two levels. So people aren't going to go from a four to a two type of thing, and I have a lot of parents ask me that. The other thing in this, two other things that this particular authors point out is that the agreement... So they rated these kids between like two and 11 times over a certain number of years, and they measured the agreement between the first time the child was rated and the last time, not looking at in between if they changed, and 74% of the time it was the same rating across the first and last, so I find that really helpful.

Dr. Amy Bailes (19:48): And one of the things they discuss in their article, which I think clinicians, and we see a lot in physical therapy, is that there's a lot of children that are functioning at extreme ends of level. For example, we often think there should be a three and a half, okay? We hear people say, "Oh they're a low three or a really high four," and that can explain some of the changes associated with some of these studies, we just don't know enough about it. But we do see those people at the extreme levels, well they're a high two or a low one. And then let me talk about the Palisano study, which was in 2018, because he's the one that developed this and got us all into this, right?

Jen Lyman (20:30): I was going to mention that. When you mentioned it was Palisano I was like, "Well wasn't he the one that developed this?"

Dr. Amy Bailes (20:36): Right, right. And really life changing for the care of kids with CP, the GMFCS has been life changing. So anyway, the Palisano Group, they studied kids in Canada and the US, also from a little bit younger, 18 months to 12 years, and they measured them up to three times on the GMFCS. One important thing they found was that there was a very high agreement between what the parents rated the child and the therapist, so that's very important to know.

Jen Lyman (21:02): And that answers my second question.

Dr. Amy Bailes (21:04): Right. The younger children that were less than four years of age, 58% did not change levels. So the younger children were more likely to change levels, whereas the children four and older, about 72% did not change levels. So it is again, looks like if you're younger you're more likely to change levels, if you're twos and threes you're more likely to change levels. In the Palisano study, he concludes that those levels two through four were likely to change because ones and fives it's pretty clear, kind of like the end of any measurement scale, it's more definitive.

Jen Lyman (21:40): And you can only go one way. In a one you can only go up or worse and in a five you can only go down or better, so the other levels are able to go both ways. A two, three, or four can have more ability to be varied.

Dr. Amy Bailes (21:55): So in either case, I think it's important to know that if you're a parent you one, ask your providers what GMFCS level they feel your child's functioning and, and you would want to look at it yourself and see if you agree. And then make sure that you do that repeatedly over your child's lifetime to see if it's consistent. And hopefully investigators and researchers will learn if there are level changes, how does that occur, and if there's certain interventions and things like that. But they don't know.

Jen Lyman (22:30): That was sort of the purpose, or I believe that was the purpose of the research study that you led and I was a participant in, I guess you'd say.

Dr. Amy Bailes (22:39): I think you were co-investigating this.

Jen Lyman (22:43): Well you coordinated all of us, you were the mama hen here and made sure that we all did our jobs. And what we were looking at was parent perceptions of the GMFCS and how we learned about the GMFCS, how we first learned about it, and the corresponding GMFM motor curves, and what we found in this was that parents do want to know this information, and doctors and physical therapists. That's how families wanted to learn about it, they wanted to learn about it from their doctors and physical therapists. I think some of the results showed that doctors were the most frequent to give them the information, then physical therapist, and then the internet.

Dr. Amy Bailes (23:20): The other way around.

Jen Lyman (23:21): The other way around. Therapists, then doctors, then the internet, was how you learned about the GMFCS. That still didn't cover the GMFM. I think families really didn't have the GMFM information that I personally think is very helpful as well. We did find that information, and I want to talk about I think why it's important, and we touched on it a little bit, but it's really having this shared language and trying to set goals for patients, or for our children, or for even an adult with cerebral palsy. It's important that everybody's on the same page and that we have goals that are attainable, or reasonable I guess that's the way to say it.

Dr. Amy Bailes (24:09): Realistic, yeah.

Jen Lyman (24:10): Realistic, yeah. And you do something beautiful, you have a quote that you use that I think you borrowed it from Michael J. Fox but, "Hope is informed optimism." I think it's a beautiful way of describing all of this. It's important to have this information or the families so that we can accept our child's diagnosis, but we also need to understand it, and then we can still have hope that there's going to be a treatment out there that might help our child go down a GMFCS level or... Well I guess you don't want to go up a GMFCS level. But even within the GMFCS level that you're in, I think that's where knowing that... My son is a GMFCS four and I think one of the things that I've used and tried to educate, not really therapists but teachers and schools when I'm working with them, using the GMFCS to describe my son's cerebral palsy and describe his capabilities within that functional level, so that the teachers understand that yes, when we go to have surgery... In fact, this is an exact example of something that happened.

Jen Lyman (25:21): My son had both his hips redone and one of his teachers was really excited about me taking him to get his hips redone, and she said she couldn't wait to be able to walk and hold his hand with him after he came back from his surgery. It was heartbreaking to me because I realized that her expectations of my son and the surgery were so far off from what my understanding was of it. We were trying to make sure that his hips weren't going to become displaced and we needed to get them back in place, but it certainly did not mean that he was not going to be walking. It meant that hopefully he wouldn't have as much pain, and hopefully caregiving would be easier and he'd remain stable over time versus getting worse if we let his hips go out. He would go from a GMFCS four likely to a five I would think, if his hips did go out completely, and then we'd be stuck. So he wouldn't be able to use his gait trainer like he currently can.

Jen Lyman (26:15): But anyway, I've found that creating that shared language for it, and also creating goals within my son's own GMFCS is really helpful. I've got a few other examples, but I know you probably have something to say about goal setting within how we should... I guess how families and therapists can create that shared language. And also for families to be a little empathetic with therapists because it is... Therapists don't want to hurt our feelings, or make us sad, or give us bad news, and I know that's something that therapists have recorded is that they see it as perhaps giving families bad news and that's hard. So maybe you could talk a little bit about how we can create that teamwork and create goals together.

Dr. Amy Bailes (26:58): It perfectly describes why we did this project together. I was coming from a clinical background where the GMFCS had been around since 1997, yet I felt that nobody in the clinics was comfortable or wanted to talk about it with families, and I felt that families didn't know it but it was so helpful to us as people providing care. I also felt that if we felt uncomfortable sharing the information, that that was really not okay. That the information wasn't ours to have, it was actually yours to have. I was only too happy to be overhearing your conversation at a conference and that's when we met and I said, "Hey, I've been wanting to do this project. What do you think?" So I think that learning what families wanted to hear and one, if they've ever heard about it. Through the survey that we did, we learned that less than half of the parents knew their child's GMFCS level, which was I guess good in a sense that some people did know it but not enough. And then when we asked parents, "Would you like to know how your child compares to other kids, your child's age and GMFCS level?," the majority said yes.

Dr. Amy Bailes (28:14): And then when we talked to families that did know their GMFCS level, the great number had never seen what we call the motor curve, which I think is what you're getting at when you talk about improving within the level. So those, again, things complement each other. But with regard to from the study that we did, learning that parents do want to know. Not everybody does but I think we can ask families, "Hey, have you ever seen this before?," and show them a picture of the levels. "Would you like to know more about how your child's motor function is doing compared to other kids like him?" Or, "Would you like to know how they're doing in order to plan what to expect?" And sometimes families initiate those questions without us saying, they say, "Will my child walk?" But this allows us to have that conversation and to honor people that want to know information and also to wait for people that maybe aren't ready yet. For example, if we say, "Hey, have you ever seen this? Would you like to know more?," people might say yes or they might say no.

Dr. Amy Bailes (29:15): We did find that in our survey that families whose children were classified at the lower numbers, one, two, and three, or higher functioning, were more likely to say they wanted to hear their GMFCS level at the same time of the diagnosis, versus the children that had lower function or higher number, fours or fives, their families, those caregivers reported that they maybe needed a little bit of time before they heard the GMFCS level.

Jen Lyman (29:40):

I can certainly agree with that, that was definitely... I absolutely felt that way. I'm certain that I would not have been able to handle all of that information at the same time. You know, I think we all know based on what we're seeing as parents, but to kind of have that in black and white too and you're getting... The higher level of children, the fours and fives, usually have a lot of other things going on too. So I feel like, at the time my son turned two, which would have been about the time that somebody could have given him a classification, he was probably at that point, he was finally getting healthy for the first time and I probably wouldn't have been ready to think, "Oh gosh, this is another blow. Here's the number he's at and this is likely where he's going to be." I'm not sure that I would have been ready to hear that.

Jen Lyman (30:33): And it wasn't for another year or two before I had ever heard about the GMFCS, that would have been probably... He was born in 2005, so it was 2009 I was taking a class, that's how I heard about it. I didn't hear about it from a therapist or a doctor, nobody told me any of that, I learned about it from a course that I was in and was able to figure out on my own. It's not that difficult to figure out based on the pictures, it's pretty clear. It asks you certain questions and you can tell what their functional abilities are based on the pictures. Yeah, I can agree with those families of GMFCS fours and fives that it's not something that I necessarily would have been ready to hear at that time.

Dr. Amy Bailes (31:13): But interestingly, we found with the majority of the people that participated in our survey, that they did want to revisit the topic. So this is something that, it's not one and done and it's important to discuss at regular visits when you're with your team or your therapist. So we've tried to implement in our setting, if it's a new patient, we might introduce it and say, "Hey, just take a look at these things, we're going to talk about it next time, see what best describes your child and we'll go into it next time." So it's a process.

Jen Lyman (31:48): Speaking to that, I had an interesting... With Bauer, I guess as a family when it comes to Bauer it's all of us, but because we didn't know or I hadn't heard of the GMFCS or the GMFM, Bauer had a baclofen pump inserted. This was 2010 at this point, I think it was 2010, that he was six, seven years old at the time. He didn't have an outpatient physical therapist, he had a school physical therapist who was treating him and she came to the hospital for the pump trial, and we all determined together that this seemed like a good thing. It certainly was going to help with caregiving and things like that. So we had the surgery and I had my list of personal goals for him, why I was doing the surgery. So a few months later, after the surgery, Bauer had not really recovered from the surgery. He was not functioning at all, he couldn't do any of the things that he was able to do prior to the surgery.

Jen Lyman (32:46): So prior to the surgery, like I said, he was a GMFCS four. He could use a gait trainer, he could pretty much use in independently. He could ride a tricycle pretty much independently. He had no problems standing in a stander for an extended period of time, holding his head up. He was a solid GMFCS four. But coming out of the surgery, and a few months after the surgery, he was flopping all over the place, couldn't function, couldn't sit up, couldn't hold his head up, was just a loosey goosey kid. The school physical therapist was baffled, I was distraught because I felt like gosh I did this to my son. We decided to take him to outpatient therapy, and the outpatient therapist was like, "Well what was his GMFCS level and did you do the GMFM?" I was looking at her like oh my gosh, no. And trying to describe what his capabilities were prior to the surgery versus after, and she was looking at this blob in front of her. I felt like gosh, she must think I'm lying.

Jen Lyman (33:53): So I'm telling this story because I do think it's a very important tool to be able to use. If we had had the GMFM and we had... We could have looked at the scores and looked at what his functioning, even within the GMFCS four, was at that point. But I didn't have that and it took a long time, it took me digging through videos to show videos of what he was doing, and thank God we have videos these days. But it could have saved us a lot of time, and it was very helpful once she got going with him and then we were able to get the pump adjusted and slowly get things going. But that initial assessment before the baclofen pump, I still to this day think, "Gosh, I wish I had that."

Jen Lyman (34:35): Even now, it's been years and we've taken the pump out, and I'm like... I was talking to his physical therapist yesterday as a matter of fact. Here we are, we're all on home quarantine, and she was having to go get his gait trainer and she was telling me how great he was doing. I was like, "Yeah Karen, it's just like before he had the pump." It's been seven years.

Dr. Amy Bailes (34:52): Oh my God.

Jen Lyman (34:57): I know. But it's a good thing. But it's funny because I just have the memories of what his capabilities were before the pump and I feel like if I had those numbers it would have been really helpful to me, and him, and the therapist and everybody that works with him.

Dr. Amy Bailes (35:10): So that's a good point. So like we talked about at the beginning, the GMFCS, the classification system, and the gross motor function motor test which gives you a score, because you administer items and see how a child does certain things, go together but they're different. So I've had therapists say to me, "Well how do I get this GMFCS level after I do the GMFM?" And I'm saying, "No, no, no, that's not how that works." You classify them on the GMFCS and you administer the GMFM to get a score. When you get that score... So it's like any other thing, you go see your therapist, it's administered by a PT, and they set up the environment to elicit certain skills. There's a little booklet with how you score those skills, and even though I've been doing this 20 [inaudible 00:36:01] years, I carry the little booklet because I don't have it mesmerized and I think it's important to look at it carefully. And then you can add up points based on different things, and you get a score.

Dr. Amy Bailes (36:12): So when you get that score, in order to get... The way I usually tell families to get to understand where your child falls on the motor curves, which shows you how they compare to other kids their age and their GMFCS level, I usually say, you know you go to the pediatrician and they show you your child's growth, and they show you a curve. Like they're six and they should be at this height or whatever. And they might show you, when your baby's a baby they do that for head size or something like that. This is the same thing but on the Y axis which is vertical, on the left side of that picture, you're looking at the score on the gross motor function measure. And on the X axis, which is the horizontal, you're looking at your child's age. And then you can plot, you have a different curve for each of those levels, GMFCS one, two, three, four, five. The therapists can use their software that you can take the score on that GMFM to plot your child's score on that curve.

Dr. Amy Bailes (37:12): So we could say, and again I'm going to use terminology that you might be more familiar with, when you take a standardized test, for example. This isn't a test that's standardized to typical kids, this is a test specific for kids with cerebral palsy, which is what makes it so special and informative. So you could plot your child's score on that curve, and you may know from looking at that, well my child is the 10th percentile, meaning that you're at the bottom of that level, that 90% of the kids are doing better than your child. So that might tell you, "Wow look, we have a lot of room to improve within that level, and that's where you should be focusing your efforts." Or, "The next time you administer the test, you could then see we went from the 10th percentile to the 50th percentile, so we could see improvement for your child within that level."

Jen Lyman (38:05): So do people get treatment, so kind of like my question with the baclofen pump, as a physical therapist when you're setting goals with the family, would you do the GMFM and then say, "Okay, here's where you kind of stopped and this is where the next questions are going." Can you kind of cheat on the test and teach to the test I guess I'm asking?

Dr. Amy Bailes (38:28): I guess you can. I mean, I guess it's important to know... Yes, you can say practice standing balance. These are the items you didn't do well on, for sure. But it's important to know that the GMFM, the gross motor function measure, the test that gives you the score, just measures motor function. It's not measuring other things that might be important, fitness, other things. But you can train for those items. Some people do, it depends on the age of the child, because when you're looking at those curves, and it's hard to do without being able to draw, for most kids the scores on that test plateau anywhere between four and six and a half, or somewhere in there. I might not be exact on that, Rob Palisano probably wouldn't be proud of me. But if you're a younger child, we can say we expect your skills to be improving at this point so let's really work, and these would be the next skills. Versus if you're eight years of age, we might say your skills are likely to stay the same for awhile. So it does help you to understand that.

Jen Lyman (39:30): And so yeah, I think it does, and I think it brings up another point. In my head it's that there is a point, and I talked about this on the last podcast with Dr. Mary Gannotti, there is a point where you're not as focused on function and you're more focused on things like fitness and participation. So I think it helps parents to understand both, where this score is. I know in Bauer's situation, when he had the baclofen pump and went way down, or way up I guess, and he got much worse, I just wanted to get him back to his original functional level. I wasn't trying to get him to a point where he was doing something more than what it was before his surgery, but I knew what his capabilities were before the surgery, and now he's back to that.

Jen Lyman (40:19): So our goals have really changed for him, and my focus has really changed to fitness, and participation, and things that are fun, and keeping him active and healthy, versus things like working on his reaching, or pulling to stand, or things like that. Because first of all, I know how hard some of those things are for him, and to just make him do that for the sake of doing that because you're trying to increase that function...

Dr. Amy Bailes (40:49): And I sometimes wonder if we're not making children feel worse by continuing to work on things like versus, "You're doing great, let's do fun things." Yeah, you have to balance it.

Jen Lyman (40:59): And I think it's very important for parents to understand that too, and maybe that's part of that whole conversation, or the initial conversation and the revisited conversation that you're like, "Okay, you know what? These are things that we're seeing and these are times that it's going to plateau. At some point we're going to start shifting goals and focus on strengthening and other stuff that's going to ensure that your child doesn't decline, and stays healthy." I've got a kind of stupid question I just thought of, but as far as the GMFCS is concerned, it can be used with anybody that's... Any cause of cerebral palsy. So if somebody has cerebral palsy due to paraventricular leukomalacia versus hypoxic HIE, versus a stroke or something like that. Is it good across different reasons you have CP?

Dr. Amy Bailes (41:55): Yes. The people in the samples that they developed around had all different etiologies or causes for having the diagnosis of CP.

Jen Lyman (42:06): Okay, thank you. I forgot to ask that earlier actually, it just came up in my head as I was talking about.

Dr. Amy Bailes (42:12): Believe it or not, it has been used in kids with Down's syndrome as well, that's the only other condition. And there is some work being done in some of the neuromuscular, muscular dystrophy type populations, but that's for a different podcast.

Jen Lyman (42:24): All right. Yeah, exactly. So as far as more information about the GMFCS, I think the CanChild website has most of... It's got a lot of videos and things like that, that families can watch and go to. And I believe the American Pediatric Physical Therapy Association may have some fact sheets available.

Dr. Amy Bailes (42:44): I think what's most helpful are the CanChild documents. The American Physical Therapy Association, I don't believe has anything specific to the GMFM or the GMFCS. But CanChild website has the descriptor sheets with the words and the pictures describing the levels, and also has the whole E&R, expanded and revised, age bands, which I think is most, most helpful. So I would suggest that families look up those. Ask their providers about it, if they're not hearing it, they need to as consumers be asking for it.

Jen Lyman (43:18): Absolutely, absolutely. And do you feel like at this point all physical... I'm probably putting words in your mouth, but this is what's being taught in PT school for physical therapists at this point.

Dr. Amy Bailes (43:30): It should be. I don't know if I can speak to all of that. I don't know the answer to that. I do know that even though things are taught, and even though people know, that actually doing it in regular practice is sometimes really hard. So we are still working on making sure that we get a GMFM administered before a large intervention like a pump or surgical interventions, for orthopedic surgeries, and afterwards to track progress. So the situation that happened with you and Bauer is unlikely to happen and it's more informed. So it is the standard of practice. Whether or not it happens, I don't know, but I do think that if families ask for it more, they're the ones that are going to make it happen.

Jen Lyman (44:22): Exactly, yeah. I feel strongly about it and I think it's... I personally, like I said, I've used it in so many different areas at this point. Being able to describe Bauer's functional capabilities, and how they line up with other people with CP, it's just tremendously helpful, and it's helpful for other people to understand. I don't do it front of Bower so often but it certainly prevents people who come and see him, or friends of ours, to say something that might hurt his feelings like, "Oh, is Bower going to get up and run after this?" I don't want him to... I'm kind of protecting him a little bit when I'm talking to people and letting them know, "This is what things look like for him." So maybe that's not the right way to be a parent, maybe I'm bing a little overprotective, but sometimes I do think it's helpful for me to just even use it with my friends and say, "Look, this is where he's at, this is kind of where he's going to stay. We're trying to keep him healthy within this bracket that he's in."

Dr. Amy Bailes (45:21): I think it's really important and I think it's what we're all trying to do for our children. And that information is power so why not use it, and share it so that everybody can make smart decisions.

Jen Lyman (45:36): Well do you have any research that you're interested in right now that you might want to share with the listeners?

Dr. Amy Bailes (45:42): Well, I think one of the things I'm interested in is the dose and what therapy interventions are being done in regular practice and how that affects outcomes. Not everybody can be in a research study. I think there's so much... What we're seeing in kids with CP is they see so many providers, and of course they come in and out of therapy throughout their lifespan, so it'd be really good to be able to look and see what we're delivering and how that's effecting outcomes. So we're trying to look at that through our electronic health record and then to look at that for specific subgroups and after different interventions. So as you know, I'm very involved with the Cerebral Palsy Research Network and trying to get a group of institutions working together to not only do research to generate new knowledge, but also to get into practice the things that we know are good such as classification using the GMFCS and other interventions. So those are the things I'm mostly passionate about and working towards little by little every day.

Jen Lyman (46:46): Awesome. And my final question for you, knowing all that you know and being so involved in cerebral palsy research, and being in this field for over 30 years now, what do you think's going to have the biggest impact for individuals with cerebral palsy moving forward? I know it's a huge question, I'm throwing it out there, I'm not saying cure CP, I'm just saying what do you think, whether it's something in research that you're seeing, something in education that you're seeing, something in politics, what do you think?

Dr. Amy Bailes (47:18): Well, I mean of course things that I think will have a big impact in the future are the use of imaging to figure out which interventions work for which kids, our increased knowledge of genetic conditions and how different conditions that are caused by genetic reasons, whether they're... If they're non-progressive, how they look, and if they're considered CP. But I think if I had one thing to say to your listeners that will have the biggest impact on CP in the future for you and for your children, is you need to raise your voice and your voices. That you need to learn about what's best practice, and you need to get out there and you need to ask for it.

Dr. Amy Bailes (47:57): Every other condition that's a chronic condition that affects children medically, that requires care across the lifespan, people advocate and they knock on doors and they ask for the care. I can go knocking on doors and knocking on doors, but until you guys knock on the doors of the people that run the institutions, we will not raise the bar for practice and bring these interventions to everyone that needs them. So I think that's going to have the biggest impact.

Jen Lyman (48:28): Well thank you, thank you. Well you and Dr. Gannotti too, Mary, she had a very... Advocacy was...

Dr. Amy Bailes (48:36): Oh really?

Jen Lyman (48:36): Yes, absolutely. So I think we have a-

Dr. Amy Bailes (48:39): We all like each other.

Jen Lyman (48:39): I know. I think we have a theme here. So I can't thank you enough for taking part in this podcast. I'm thrilled, I think you've provided a wealth of information and I hope that families go back and they learn more about the GMFCS and they talk to their therapists and their physicians about it, and the corresponding motor curves. I love to be able to be that voice for families to give them the tools that they need so that they can self-advocate, and I do think this is an important thing to be able to self-advocate for, and it's not that hard. Thank you, thank you, thank you Amy.

Dr. Amy Bailes (49:16): Thank you so much, and I hope that people find this information helpful, and it's a pleasure to be with you today.

Jen Lyman (49:24): And I want to thank my producer, Greg Tilton, who I believe makes me sound a little smarter than I am. I know that Amy doesn't need any help with that, but I certainly do. I hope you guys come back to listen to Cerebral Palsy Health, and I hope you found this a conversation that counts with an expert who cares. Bye-bye.

Dr. Amy Bailes (49:43):Bye.

Jen Lyman (49:46): Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcasts, and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at jblyman@mac, that's M-A-C, .com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor, or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast, and/or any other medical concerns with their personal medical team.