Wisconsin Public Television	University Place		Monitoring and Supporting	Children with Cerebral Palsy		Ruth Benedict		3/1/14	UP991  cc >> I cannot tell you all what a wonderful experience this is for me. I've been here at UW-Madison since 2001. In this audience there are people that served as primary mentors to me upon my arrival in Wisconsin. There are people here who have been students of mine in the occupational therapy program. There are people here with whom I've worked as colleagues through some of the clinical work that has been done here at the Waisman Center. There are people here with whom I've gotten to know through the -- project and the Adam Network. I know some of the folks from CDC as well as the Maureen -- and Carrie -- and the team of -- research here at the Waisman Center. And there are some of you that I've gotten to know through my own research here at the Waisman Center because you are families and children that have come and participated in a research study that I have done here at the Waisman Center. I cannot think of a more welcoming and warm and friendly community with whom to share this work. I think you for that opportunity. 

It's just delightful to be here and to see so many familiar faces. It's also wonderful to know that some of you I have not met. But hopefully in the future I'm going to have the opportunity to meet you and get to know you and know more about your lives and the things that are important to you with regards to Cerebral Palsy. So thank you. I'm going to talk a little bit more today about function. Monitoring function, actually I should go back to my first slide. I noticed as I stood up here that I put the title as Monitoring and Supporting Functional Skills among Children with Cerebral Palsy. I realized I made a mistake. My mistake is that much of my work has not only been about the children with Cerebral Palsy, but also about their families and caregivers. Much of my work has been trying to understand not only how CP affects children but also affects the people who are involved in their lives. 

I apologize for that mistake, but I hope you will accept that apology and know that my work is very much grounded in understanding not only children, but the families and communities and environments in which they live. A couple of objectives here. First, I want to provide you just a general overview of some of the strengths and limitations of the classification systems about which you've already heard from both Dr. Ward and Dr. Yearngin-Allsopp, some of the assessment tools for determining function among persons with CP. I want to present the current estimates of the prevalence of gross motor function. And actually -- has already done that, so I'm not going to go back and repeat it. And then to examine the evidence for interventions. That's what's really important to me as a clinician is understanding the interventions that are important for individuals with CP, and how those interventions then maximize their functions and support the care giving that some of these individuals need. I'm an occupational therapist. Occupational therapists, physical therapists, speech language therapists, what we care about is function and participation. We are all about helping individuals with CP to be able to live and function in the world. 

As OTs this is something that is near and dear to our hearts and has been a driving force for much of what we've done for many, many years. It's important that we be able to sit on the sand, play in the sand, and be a part of everyday life. Why do we care? As I said, as therapists that's what we do. I also wanted to bring to your attention this shift that has occurred over time with regard to our understanding of disability in general and CP specifically in terms of thinking about the condition not just as a diagnosis but as a condition that has ramifications, as Dr. Ward pointed out, for many different aspects of our lives. We have begun to understand that it's not just the impairment that affects the body of the individual with CP that is important, but it's also the environment, the context, the culture, the supports and the other parts of our lives that we interact with that are really truly important to helping support and make us successful participants in the world. The international classification of functioning, disability and health, for those of you that may not be familiar with it, is a World Health Organization effort to try to quantify in some way and be able to classify the different levels of function that we experience. When I say, we experience, I mean all of us. We all have certain functional abilities and skills and capabilities. There are probably many of us that would not be able to get up there on the slopes in Sochi and ride a luge down that slippery slope. There are many of us that cannot perhaps knit or who cannot perhaps even run around our neighborhood. 

We all have different limitations and abilities. The ICF is a way of thinking about those functional skills that we all have and how we can use them in a way that can maximize, again, our participation in life. An important part of the ICF is recognizing that it's not just the impairments, or the bodily functions, or the bodily structures that we live with that determine our ability to participate, but it is also that context and environment that is important. Having access to assist devices, to mobility devices, having access to curb cuts that allow us to get across the street, having access to the verbal tone that come with an elevator so that we know what floor we're arriving at when we're going up and down the elevator in a building. All of those different aspects of our environment can make our lives more functional. It's also important to think about function in terms of predicting our need for supports and services. Just knowing that we as an individual have Cerebral Palsy is not sufficient. It doesn't tell us a whole lot about what we're going to need in terms of our devices, in terms of the supports that we might need for care giving, in terms of our ability to go to school or work. We really need to know something more about the various supports and services, and that's dependant on function. Then finally, for program planning and policy. 

In order to actually develop programs and policies that are going to indeed be supportive of all individuals, we need to know something about how they function. We know from the literature, there have been many studies that have indeed shown that functional limitations, when people experience them, they have a greater need for services, whether it be home health, equipment, therapy, special ed. services, medical services, any of those services, we know that people with functional limitations need more. We also know that individuals with functional limitations have a greater impact on the families with whom they live. They often times need more care. They sometimes may have an impact an individuals ability to be out in the employment or workforce, because that care is needed at home. There are many, many different aspects of those functional limitations. The example that Sandy gave of the amount of time that she spends taking Lauren to various appointments, that has a huge impact. The impact on family is great. We know that there's a decreased access to health care services among individuals with functional limitations. Some of my own work has looked at this with particular regard to the therapy and support services that individuals need. 

We know that individuals with functional limitations often have inadequate insurance and that there's often a perceived poor quality of interactions with providers, mainly because it's not always clear what the needs are of the individual, but also because providers often times are not trained to address those needs. We've already heard about the Gross Motor Function Classification System and the MACS, Manual Abilities Classification System. I'm actually focusing on the motor piece, the Communication Function Classification System is a relatively new classification that's been added for looking at communication skills. These are tools that we as therapists have indeed been using to help us to understand the levels at which people are functioning. They have been wonderful tools. They do provide us with the information that is needed to begin to look at the long-term prognosis, and to begin to plan treatments and do other things that we do as therapists. They're tools that we are finding to be really helpful to us. We hope they're helpful to you as families as well. You've seen this already. Just to review again very briefly, the Gross Motor Function Classification System does allow us to look at five different levels of function. 

We think about those and how they might then impact participation in life. Just to distinguish, as you look at levels one and two, it might not be real clear. What's the difference? They are both independent walkers. That's true, but a child at level one is really able to do the things that most children can do without much limitation, if any at all. Whereas a child who is at level two probably needs a little bit of support, for example, holding the handrail going up the stairs. Or they might be dependant on a mobility device for long-term, long-distance, movement. One other thing I want to emphasize about this classification system is, it is developmental. There are now categories that describe the developmental skills that a child should have at any of these levels of function according to their age. Here is just an example of some children or individuals who are probably functioning at these different level. I don't know if you recognize-- Does that work? No, that's wrong. 

Anyway, over on the far left, anybody recognize who that is? Ashton Kutcher, yeah, and his twin brother, Michael, who has a very mild CP. I had the opportunity-- Several of us, I think, have had the opportunity to here him speak at the AACPDM meetings. He's quite inspirational. He has quite a story to tell about his life with being the brother of Ashton Kutcher, and about his life with Cerebral Palsy. Down here in the bottom middle is little Lauren --. You're going to hear from her mom later. One of my students-- Lauren has been participating in one of our research studies. This is another participant in one of the research studies. In the top right some of you recognize Marcella Andrews, PT, who's done a lot of work here at the Waisman Center. You saw one graph that showed kind of how developmentally these levels play out. 

But that graph, I believe Dr. Ward shared it, ended at about age 15. More recent work now shows that if we carry these levels of function out to age 21 we actually begin to see a little bit of a decline. Not a change in level, but a little bit of a decline, in terms of the association between being classified into one of these levels and the actual gross motor skills that an individual might have. This could be explained, very likely, by the co-occurring issues that occur as a child develops. A child gets older and heavier, they're less likely to be carried as much as they were when they were young. They are more likely to issues around contracture. They're bigger and heavier so they might need the mobility device. So we see a little bit of a paring of there at the end of these levels of function. It appears that as children get older they're actually losing a little bit of skill, but probably it's not really a loss of skill. It's more that they're becoming a little bit more dependant in order to be more functional. 

They might be more dependant on a mobility device, or they might be more involved in that sense. What does the GMFCS tells us as clinicians? Well, it tells us something about being able to predict future motor ability. Actually, if you go back and look here, on the far left. I don't know if you can tell. This starts at age two. Prior to age two the chart that Dr. Ward showed, there is a rapid developmental change that occurs in these children for those first couple of years. It's really hard in those first couple of years to identify the particular classification for a child. Once we get to age three or four it begins to stabilize. Once they reach that age we're much more able to predict the longer term prognosis for these individuals. After age two we have pretty reliable data that helps us to predict the long-term prognosis in terms of motorablity. 

What that means is that then we can answer that question of, will my child ever walk? We can help you as parents to understand and to know what that might mean for your child in terms of their long-term abilities. This is not to say that there aren't the exception to the rule. Certainly there are. But for the most part we're able to kind of help you to understand what supports might be put in place to help your child to be successful and to fully participate in life. It guides our treatment approaches and goals. It allows us to provide client and caregiver education regarding, you know, what are some of those long-term equipment and care needs? The MACS, the Manuel Abilities Classification System is another tool, as we've said, that looks more at upper extremity function. We're just beginning to do some dabbling in understanding this a little bit better. I'm not going to spend a lot of time on it. A lot of what we've done, both with the Adam Network and in our -- research is more related to the Gross Motor Function Classification System. I wanted to share with you-- Dr. Yearngin-Allsop talked about the addition of the Gross Motor Function Classification System to our prevalence estimates. 

I think you should be proud that Wisconsin was a major force behind convincing her and the rest of the team that this was something that we should do because of much of what I just said. We really, truly believe that function of very, very important and very critical, and that it tells us a lot more about program and policy and services than just knowing whether or not an individual has CP. Then I wanted to take a little bit of time to share this with you. This is a recent study that has come out just in the last few months out of Australia. A team there did a systematic review of the interventions that are used with individuals with Cerebral Palsy. I encourage you to find this article if you can. Look at what they have learned through this systematic review. A systematic review is where a researcher goes back and looks at all the literature with regard to what is happening in a particular intervention area. They then take all the studies that have been done and they evaluate them, and look at the quality of the evidence. Then they try to make a determinations as to whether or not a particular intervention is indeed effective. 

In this particular case, you can see, they did a huge library data search. They looked at many different databases and gathered a whole bunch of articles. They looked for articles where greater than 25% of the children had CP. Then they used criteria that have been established to evaluate the levels of evidence for interventions. They rated those. They had two different independent raters look at the data. They used two different systems, one called the GRADE System. I'll tell you about that in just a second. And one called the Evidence Alert Traffic Light System. They try to evaluate the quality of those studies and what they had to say about the interventions that individuals with CP receive. 

The GRADE System is a criterion standard evidence grading tool. This link will take you to the website where you can actually see the actual criteria. It is in line with the World Health Organization and its efforts to think about function. It looked at both the quality and the quantity and the strength of that evidence over time. They looked at things like the methodology, the degree to which the intervention was convenient to folks, the degree to which there might be risks associated with the intervention, and so forth. They rated them on this GRADE System. They also used this Evidence Alert Traffic Light System where they actually looked at all those interventions and tried to determine in a way that was quite easily understandable for the general population as to whether or not it was a red light, yellow light, or green light. Red light interventions were things where there was actually evidence that said, well, maybe we shouldn't be doing this. Yellow light was, we don't have enough evidence or the quality of the evidence isn't that good, or we have conflicting evidence that might, in one case, suggest it's a good intervention and in another case not so much. Then finally the green light are ones that have some pretty strong evidence that supports their use. 

I just quickly put up some of the interventions that they evaluated. You'll see the yellows are those that fell in that yellow light, maybe, maybe not. If we are going to do those interventions maybe we need to be doing some very particular measurement and looking at those interventions very carefully and deciding whether or not we can generate more evidence in support or refuting their use. Those with the green lights are those that there's some evidence out there that suggests, yes, they are effective and they probably should be used when appropriate. And again, the red X's are not particularly effective a least for that particular type of treatment. NDT got a red light for contracture management. But you're going to see in a minute, it also has a yellow light for another treatment methodology. These are just some of them. Again, I'm not going to go through all of them in detail, but just alert you that this article is out there. I encourage you to look for it and read it in more detail. 

In terms of motor function, again, this is an area that I'm particularly concerned about. You'll see again the NDT is not supported as much here. Sensory integration, one thing that is sort of near and dear to the hearts of many, many OTs, but for motor function in CP it's not the right treatment. It might be for some other condition or in some other environment, but not here. And yet, goal directed training, CIMT, which is Constraint Induced Movement Therapy by manual training, having OT post Botox, all appear to be supported, at least, at some level. Home programs and context focused therapies. There's a lot to be learned. And yet a lot of work to be done. There's a lot of yellow up there as well. In terms of function and self-care. 

Here's where I said NDT is no longer an X. It's now considered a maybe. We need to do more work and understand it better. I understand NDT even in its own theories and models of practice is changing as well. It's an evolving therapy. The goal-directed training and home programs again appear to be functional. And then just very briefly, some of the other areas that were considered are communication, mealtime management, behavior and social skills, parent coping and so forth. Then finally I wanted to share with you the one study that we've been carrying out here at the Waisman Center. There are several of the people involved in this study here in the room. We were very interested in looking, in particular-- Some of you may remember back when Dr. Leland Albright was here. 

He brought endothecal baclophen in a big way to the Waisman Center. Now Dr. -- is carrying on his work. We have been very fortunate to have had some collaborations there, and to be able to recruit some of you families who have been participating in Spasticity Movement Disorders clinic into the study. We were particularly interested in looking at the functional outcomes for children and their caregivers. This is some of our preliminary work. This is a two year longitudinal study. We are still, right now, finishing up the last of the 24-month follow-up sessions with some of our families. We actually have one scheduled for Monday. We're just getting that data together. But Marcella and I actually worked together on this particular piece where we looked at care giving exertion. 

This was our model that we were thinking about as we thought about caregivers and how the effort that they have to put in in helping a child both be transferred and to be dressed. Some of the care giving demands that are on those individuals. We were interested in looking to see whether or not we could do a subjective measure of exertion and an objective measure of exertion. By subjective we mean the parent reporting, or the caregiver reporting, how difficult is it for you to do the transfers and the dressing? Where as the objective measure is were we're actually capturing heart rate, oxygen expended, and trying to get a more objective measure of how much actually effort and work they were doing when they were doing dressing and transfers. We had 19 caregivers in this portion of the study with children who had CP somewhere between the ages of three and 22. All of these children received an endothecal baclophen pump, so that was the intervention we were interested in studying. They all came to us though the Spasticity Movement Disorders clinic. We had the caregivers actually transfer the child from wheelchair to mat. They then dressed the child, then they transferred them back from mat to wheelchair. We captured the data while they were doing these activities. 

Here is actually Sandy and Lauren. Just to give you a feel. You can see Sandy is wearing a mask that is capturing her volume of oxygen expended. You'll see back here on the right, there's a heart rate monitor that's also being used while she is engaging in this dressing task with Lauren. This is just to give you a little bit of a feel. We are just delighted that our caregivers were willing to put on this equipment. [laughter] And engage in these tasks.  We did a lot of other things as well, but this is just one piece of our protocol. The caregiver is rested both before and after doing each task so we were able to get some baseline measurement, then we were comparing their baseline to their actual engagement in the task. These were a little bit about the caregivers. 

You can see we collected information at zero, six and twelve months. For this particular paper that we published we actually just used this data, the zero, six and twelve months. All we wanted to do was compare and see, are we capturing similar information from their objective rating of how they're working to their objective rating from their actual exertion. What we found was, if you look at this scatter plot up here on the right, that represents some correlation. It's not as strong as we thought we might see, but there is at least some correlation between what caregivers say they're experiencing and what they're actually experiencing. This we thought was great news. What that means is that we don't have to put caregivers through wearing that mask or working so hard with heart rate monitors and other things. We can just say, how hard are you working? And they can pretty accurately tell us that. We were delighted with those results. What we are not finding, however, is from that objective data thus far we are not finding that there is much difference in the amount of energy exerted from baseline at zero before the pump was inserted, until six or twelve or 24 months after the pump was inserted. 

We think that's because we are capturing that data in the clinic at one point in time, engaged in one activity. As any caregiver I'm sure will tell you, that experience of dressing and transferring can be variable from time to time. What we're seeing is just a lot of variability. But when we also gathered information over the course of that six, twelve and 24 months, about again, the caregivers perceptions with regard to goals they set for dressing and care giving, then yes, we are seeing some differences. We are seeing a significant reduction in the difficulty of dressing tasks at both six and 24 months. It is occurring in those first six months after ITB, and it's being sustained over time. We're also seeing improvement in their performance and satisfaction with the dressing related goals that they have established. With transfers, however, it's a little more variable. So we started thinking, why would that be? Actually, this is one of the things Marcella hypothesized from the beginning. As you introduce ITB which relaxes those spastic muscles, the dressing get easier. 

It's easier to move those arms and legs and get the cloths on to the children. But the transfers actually end up getting a little more difficult because you've lost the tone that you have been relying on to help that individual to do the transfer. You know, we're finding more or less what we thought we'd be finding. Stay tuned, there will be more to come. One other piece I just wanted to show you, very briefly, that we are doing with this. We are actually looking at motor function amongst the kids. Here's Lauren again. We're trying to, again, collect both some objective and some subjective data about motor-- Oh, I've got to go back. About motor function. Here she's hooked up to a tool that is going to help us gather information about velocity and direction of her movement. 

It will give us some objective data. We also had the videotape that is giving us some subjective data. You're going to see in a minute that she begins to isolate her fingers. This is post-ITB I believe. She's, you know, got a little more control maybe than she did before. This is another piece that's yet to come.  Then I just want to thank all of the many, many people that have been a part of this work and have been such wonderful collaborators and supporters to me. There are a number of the people from the Adam team listed here, certainly not all of them. There wasn't room on the slide. The SMD team and the funders, the Cerebral Palsy International Research Foundation which funded the spasticity movement disorder study, the WARF, and Virginia Horne Henry Fund here on campus, and then the Waisman Center which has been an incredible support. 

Thank you. [applause]