Though mortality is the traditionally recognized measure of quality in children undergoing surgery for complex congenital heart disease, the Cardiac Neurodevelopmental Program at Children’s Mercy is seeking to redefine outcomes measures for this pediatric population.
The program coordinated by the Ward Family Heart Center, is one of just a handful of innovative programs across the nation designed to help these children and their families deal with the sequelae of complex congenital heart disease.
Elizabeth Willen, PhD is here to discuss the Cardiac Neurodevelopmental Program at Children’s Mercy.
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Cardiac Neurodevelopmental Clinic: Redefining Outcomes for Congenital Heart Disease
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Learn more about Dr. Elizabeth Willen
Elizabeth Willen, PhD
Dr. Elizabeth Willen is a clinical psychologist at Children’s Mercy Kansas City and Clinical Assistant Professor of Pediatrics at the University of Missouri-Kansas City. Dr. Willen's areas of expertise include neuropsychological testing. She completed her residency training at Miller School of Medicine and her fellowship training at Mailman Center for Child Development in Miami.Learn more about Dr. Elizabeth Willen
Transcription:
Cardiac Neurodevelopmental Clinic: Redefining Outcomes for Congenital Heart Disease
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “Cardiac Neural Developmental Clinic: Redefining Outcomes for Congenital Heart Disease.” My guest is Dr. Elizabeth Willen. Dr. Willen is a clinical psychologist at Children’s Mercy - Kansas City and Clinical Assistant Professor of Pediatrics at the University of Missouri, Kansas City. Dr. Willen, welcome to the show.
Dr. Elizabeth Willen (Guest): Thanks for having me.
Dr. Smith: So, this is an interesting topic because we know that mortality is the traditional outcome that we measure in children undergoing surgery for congenital heart disease but your clinic, the Cardiac Neural Developmental Clinic at Children’s Mercy, is really looking to redefine outcome measures for this particular population. Why are you looking to do that, and exactly how are you redefining those outcomes?
Dr. Willen: Right. So, historically, this is a process that’s been happening for many years if we use the oncology, the cancer outcomes studies in children, it was really following a very similar model: that as we become much better at prolonging life and curing specific types of what was before, deadly heart defects, what we’re now saying is, “Okay. Well, we need to be addressing quality of life.” How well are these children growing up, developing, learning, making friends, functioning in the community, functioning in the school, functioning in the home. So, it’s really a shift from looking at “Okay. Well, now they survive. Now what?” For families, this is really the critical piece because, yes, families are thrilled that you saved their child’s life. That’s a major event. But, they also want to know, “Well, is my child going to develop normally from this point on or are there going to be differences in his or her development that I know to know about so that I can be a better parent and better support my child?”
Dr. Smith: So, when the family asks that question, “So, my child survived. Now, thank you. But, how are they going to do two years down the line, three years down the line, as a teenager, etc.?” So, how do you answer that? What are the things that we’re going to look at that’s going to help us to kind of redefine outcome in this case? I mean, what exactly are those things we’re going to look at?
Dr. Willen: So, one of the ways that we approach this is we really view this as a program. It’s less so a specific clinic and more an all-encompassing program that provides—really, the way I that I present it to families is that I say, “We are trying to really be your developmental safety net so that as your child grows and develops and learns new things, we are available to help along the way when problems emerge.” What I will often tell families early on--I start seeing infants as young a nine month—is, we don’t have the tools really to make highly accurate predictions about what they are going to look like when they are 10, for example, 10 years of age. But, what we can do is say, “This is where they are at right now. These are the things that I am seeing that make me want to make sure that I have close follow up.” For example, one of the most common problems that we see are related to early feeding issues. Feeding problems often tie into problems with language development and, specifically, speech because children are getting the oral motor work out that early sucking behaviors and experience with taste and textures provides them, especially if they end up being G-tube fed. So, we try to sort of cut it off at the pass and say, “Okay, this is the risk. It’s our job to be the ones who are really on top and worried about this.” Your job is to be mom and dad. Keep doing everything that you’re doing because you’re doing fantastic. We want to monitor this or, in the case where there is clear evidence of a delay or deficit in their development, make sure that the child is getting, the appropriate frequency and intensity of intervention. Sometimes, that can be challenging if a family is living in a more remote area. We have a very large catchment area at Children’s Mercy and coordinating all of those services to make sure that the child is getting exactly what they need is another aspect of what our program does. So, we try to support families not just in saying, “Okay, this is where your child’s at,”—or, your infant or toddler-- but, “This is how we’re going to help you access these additional services.” Then, as they enter school age, what I’ll tell families when they are in the toddler years, we try to time our evaluations so that we’re seeing them perform major developmental milestones. So, we try to evaluate them fairly frequently in infancy and then again right before they enter kindergarten. Then, we try to time another evaluation when they shift from that learning to learn or learning to read, for example, to a reading to learn model where those skills should have been mastered and now everything starts to get very complicated, so we can catch problems before they become extremely challenging for the child. I recently saw a child for whom we just caught him right at that point and mom was very astute and recognized that there potentially an issue and we got him in for an evaluation and identified a reading disorder and said, “Yes, this is the kind of intervention that he needs.” It may have taken the school longer to pick up on that because they are managing a large number of kids and they are not assessing them as frequently as we can. So, I hope that answers that question.
Dr. Smith: Yes. So, when I think about this program and I like the way you put that--that it’s more of a program where you’re following the child at different stages. When you look at it as from that perspective as a program, what are your personal long term goals with this?
Dr. Willen: Well, I think first of all, I just want to stress that we really function as a team of professionals; that while I may be doing the neurodevelopmental or neuropsychological assessment, there are a host of other equally important providers: speech therapists, occupational therapists, neurologists, pediatricians, our program coordinator, who make all of this happen. None of this would happen if it was just me. So, I think, as a team, what we really are trying to do is--again, I use that term
“safety net”--is to really in the long term make sure that these kids with very unique medical issues as well as sometimes very unique developmental issues are getting the appropriate care that they need and in a way that’s evidence-based so that we are following what is happening in terms of what research is showing us. That as these children age, they are growing into new deficits as their brains develops and as information in the world becomes more complex, there are going to be other specific problems that may emerge. We keep ourselves and families apprised of that so that we can help them prepare. It’s really sort of a new world, I think, from where we were 10, 20 years ago in this field.
Dr. Smith: Well, Dr. Willen, what about the logistics of it though? I can imagine that a lot of the patients that come to Children’s Mercy to have congenital heart surgery, they are not always from the city, right? They can come from, I’m sure, many different places--smaller towns. How do you work with those patients and those families that don’t actually live around the medical center?
Dr. Willen: Right. So, it takes a village. That’s what I’ll say. One part of our team that I forgot to mention are our social workers and they are critical to how to getting this done, to helping us identify important resources in more rural communities; helping to identify therapists, behavior therapists, for example, for children with behavioral through our developmental behavioral pediatrics program that I’m a part of. I’m constantly asking colleagues, “Okay. I have a family that is living in this area. Do you know what resources are around and what do you recommend?” And, the beauty of working at Children’s Mercy is that there’s always someone who knows someone who can help figure this out. Some of our families, it’s definitely more of a challenge, particularly in that infant/toddler period where resources are really dependent upon funding in their district to support those services.
Dr. Smith: Right. Well, from a general practitioner’s standpoint and also from the family standpoint, Dr. Willen, what you’ve done and what you’re doing is, you’re helping all of us to recognize what are common neural developmental problems that can happen after surgery and if we recognize those early, we’re going to be able to impact the quality of life for that child down the line. I mean, this is awesome work. I know this is going to help everybody involved to take better care of these patients. So, what wonderful work that you’re doing and I’m thanking you for doing that and thanking you for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy - Kansas City. For more information, you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Have a great day.
Cardiac Neurodevelopmental Clinic: Redefining Outcomes for Congenital Heart Disease
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “Cardiac Neural Developmental Clinic: Redefining Outcomes for Congenital Heart Disease.” My guest is Dr. Elizabeth Willen. Dr. Willen is a clinical psychologist at Children’s Mercy - Kansas City and Clinical Assistant Professor of Pediatrics at the University of Missouri, Kansas City. Dr. Willen, welcome to the show.
Dr. Elizabeth Willen (Guest): Thanks for having me.
Dr. Smith: So, this is an interesting topic because we know that mortality is the traditional outcome that we measure in children undergoing surgery for congenital heart disease but your clinic, the Cardiac Neural Developmental Clinic at Children’s Mercy, is really looking to redefine outcome measures for this particular population. Why are you looking to do that, and exactly how are you redefining those outcomes?
Dr. Willen: Right. So, historically, this is a process that’s been happening for many years if we use the oncology, the cancer outcomes studies in children, it was really following a very similar model: that as we become much better at prolonging life and curing specific types of what was before, deadly heart defects, what we’re now saying is, “Okay. Well, we need to be addressing quality of life.” How well are these children growing up, developing, learning, making friends, functioning in the community, functioning in the school, functioning in the home. So, it’s really a shift from looking at “Okay. Well, now they survive. Now what?” For families, this is really the critical piece because, yes, families are thrilled that you saved their child’s life. That’s a major event. But, they also want to know, “Well, is my child going to develop normally from this point on or are there going to be differences in his or her development that I know to know about so that I can be a better parent and better support my child?”
Dr. Smith: So, when the family asks that question, “So, my child survived. Now, thank you. But, how are they going to do two years down the line, three years down the line, as a teenager, etc.?” So, how do you answer that? What are the things that we’re going to look at that’s going to help us to kind of redefine outcome in this case? I mean, what exactly are those things we’re going to look at?
Dr. Willen: So, one of the ways that we approach this is we really view this as a program. It’s less so a specific clinic and more an all-encompassing program that provides—really, the way I that I present it to families is that I say, “We are trying to really be your developmental safety net so that as your child grows and develops and learns new things, we are available to help along the way when problems emerge.” What I will often tell families early on--I start seeing infants as young a nine month—is, we don’t have the tools really to make highly accurate predictions about what they are going to look like when they are 10, for example, 10 years of age. But, what we can do is say, “This is where they are at right now. These are the things that I am seeing that make me want to make sure that I have close follow up.” For example, one of the most common problems that we see are related to early feeding issues. Feeding problems often tie into problems with language development and, specifically, speech because children are getting the oral motor work out that early sucking behaviors and experience with taste and textures provides them, especially if they end up being G-tube fed. So, we try to sort of cut it off at the pass and say, “Okay, this is the risk. It’s our job to be the ones who are really on top and worried about this.” Your job is to be mom and dad. Keep doing everything that you’re doing because you’re doing fantastic. We want to monitor this or, in the case where there is clear evidence of a delay or deficit in their development, make sure that the child is getting, the appropriate frequency and intensity of intervention. Sometimes, that can be challenging if a family is living in a more remote area. We have a very large catchment area at Children’s Mercy and coordinating all of those services to make sure that the child is getting exactly what they need is another aspect of what our program does. So, we try to support families not just in saying, “Okay, this is where your child’s at,”—or, your infant or toddler-- but, “This is how we’re going to help you access these additional services.” Then, as they enter school age, what I’ll tell families when they are in the toddler years, we try to time our evaluations so that we’re seeing them perform major developmental milestones. So, we try to evaluate them fairly frequently in infancy and then again right before they enter kindergarten. Then, we try to time another evaluation when they shift from that learning to learn or learning to read, for example, to a reading to learn model where those skills should have been mastered and now everything starts to get very complicated, so we can catch problems before they become extremely challenging for the child. I recently saw a child for whom we just caught him right at that point and mom was very astute and recognized that there potentially an issue and we got him in for an evaluation and identified a reading disorder and said, “Yes, this is the kind of intervention that he needs.” It may have taken the school longer to pick up on that because they are managing a large number of kids and they are not assessing them as frequently as we can. So, I hope that answers that question.
Dr. Smith: Yes. So, when I think about this program and I like the way you put that--that it’s more of a program where you’re following the child at different stages. When you look at it as from that perspective as a program, what are your personal long term goals with this?
Dr. Willen: Well, I think first of all, I just want to stress that we really function as a team of professionals; that while I may be doing the neurodevelopmental or neuropsychological assessment, there are a host of other equally important providers: speech therapists, occupational therapists, neurologists, pediatricians, our program coordinator, who make all of this happen. None of this would happen if it was just me. So, I think, as a team, what we really are trying to do is--again, I use that term
“safety net”--is to really in the long term make sure that these kids with very unique medical issues as well as sometimes very unique developmental issues are getting the appropriate care that they need and in a way that’s evidence-based so that we are following what is happening in terms of what research is showing us. That as these children age, they are growing into new deficits as their brains develops and as information in the world becomes more complex, there are going to be other specific problems that may emerge. We keep ourselves and families apprised of that so that we can help them prepare. It’s really sort of a new world, I think, from where we were 10, 20 years ago in this field.
Dr. Smith: Well, Dr. Willen, what about the logistics of it though? I can imagine that a lot of the patients that come to Children’s Mercy to have congenital heart surgery, they are not always from the city, right? They can come from, I’m sure, many different places--smaller towns. How do you work with those patients and those families that don’t actually live around the medical center?
Dr. Willen: Right. So, it takes a village. That’s what I’ll say. One part of our team that I forgot to mention are our social workers and they are critical to how to getting this done, to helping us identify important resources in more rural communities; helping to identify therapists, behavior therapists, for example, for children with behavioral through our developmental behavioral pediatrics program that I’m a part of. I’m constantly asking colleagues, “Okay. I have a family that is living in this area. Do you know what resources are around and what do you recommend?” And, the beauty of working at Children’s Mercy is that there’s always someone who knows someone who can help figure this out. Some of our families, it’s definitely more of a challenge, particularly in that infant/toddler period where resources are really dependent upon funding in their district to support those services.
Dr. Smith: Right. Well, from a general practitioner’s standpoint and also from the family standpoint, Dr. Willen, what you’ve done and what you’re doing is, you’re helping all of us to recognize what are common neural developmental problems that can happen after surgery and if we recognize those early, we’re going to be able to impact the quality of life for that child down the line. I mean, this is awesome work. I know this is going to help everybody involved to take better care of these patients. So, what wonderful work that you’re doing and I’m thanking you for doing that and thanking you for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy - Kansas City. For more information, you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Have a great day.