Michael Smith, MD (Host): This is Transformational Pediatrics with Children's Mercy, Kansas City. I'm Dr. Mike, and today we're going to be discussing patient-centered assessment of barriers to optimal adherence in adolescent kidney transplant recipients. My guest is Dr. Judith VanSickle, who has over 17 years of experience in pediatric nephrology, end stage kidney disease, and pediatric kidney transplantation. She leads patient-centered quality programs focusing on barrier assessment and medical adherence. She serves on the faculty of the University of Missouri Kansas City, the Children's Mercy Hospital as Associate Professor of Pediatrics, and on several national committees involving public policy, quality control, and patient safety. Dr. VanSickle, welcome to the show.  

Judith VanSickle, MD, MHPE, FAAP, FASN: Thank you so much. Thank you for the invitation. I'm very excited to talk about this topic with you today.

Host: Let's start off with some basic current kidney transplant stats. What's the list like? How many kids? What's the wait time? What can you educate us on that?

Judith VanSickle, MD, MHPE, FAAP, FASN: Absolutely. And you know what? I think many people don't really recognize that there are kids who need kidney transplantation, not just bone marrow transplantation, right? But there are solid organ transplant patients in a pediatric population, especially for kidneys. So, just to give you an example, during the pandemic, when everything was kind of shut down, we still had more than a thousand children added to the wait list.

And so, if you look into it compared to the adult, of course, this is still partial, or that what adult is really waiting for it, but now we have about almost 50 percent of these kids who were not going to get a kidney transplant within one year that they really kind of going to expand it to the next year, too.

Still, there is that really interesting challenge because, of course, you do not want to have a child, right, wait on that kidney for too long for many reasons that we will go into it. And you sort of kind of want to really get to that kidney transplant state. You know, avoiding any complication. We still compare to a liver or heart. I think we still relatively have a longer wait time for a kid. And so I think this is, we really bring us some very specific problem that we are facing for our populations.

Host: So speaking kind of into that a little bit, which means maybe some of these kids are going to be longer on dialysis than maybe you would prefer as the expert, right? So in terms of life expectancy, in terms of quality of life, how does kidney transplant compare to dialysis?

Judith VanSickle, MD, MHPE, FAAP, FASN: The answer for that, they can actually meaning to, you know, stay on dialysis longer time, for example, if they're born without the kidneys. Dialysis is a suitable procedure that we do routinely, and we are able to get them survive, but really, we cannot get them thrive. And to give you an idea is that if there is a baby who's born without kidneys and, you know, at day one, we're actually going to start dialysis on them, they're never going to really have the same life expectancy compared to a normal child.

To actually put it into the number, they are not going to make it to the age of 30. And so if this is a teenager who start on dialysis at the age of 15, they're really not going to make it to the age of 40 if they are on dialysis. So kidney transplantation gives quantity, so two times, three times, longer life expectancy, but also, I mean, just to be honest, right, it is really decreased quality of life.

When we did this study back in the early 2000s, this was shocking. Kids actually compared the quality of life worse than the patients who had cancer. I mean, this is really very, very important. And then, let's not forget something. These patients are extremely complex. They have to come to the clinic, even if they have home dialysis really often.

They have a lot of medication still that you need to do, dietary restrictions. So this is really a significant burden on the families. And actually, when we did a recent study, that did show that families are really reporting a high burden.

Host: Definitely. I want to get into that with you, Dr. VanSickle, but I want to back up just for a sec, cause I liked what you said. It really resonated with me. And I think it might resonate again, to hear it with other physicians that dialysis, and make sure I'm saying this right, because I'm quoting you that dialysis can help with survival, but not necessarily to thrive. Is that kind of what you were saying there?

Judith VanSickle, MD, MHPE, FAAP, FASN: So what we really able to not is achieve that if there is a infant who born right without kidneys because now we can get these children. So, you know, this is actually wonderful because 40 years ago, these children never survived, right? So now, parents are able to get these babies delivered, but if we would have not transplanted them as soon as they get to that size, where a suitable kidney will be able to get into them, they're really not going to achieve that developmental milestone that's really important.

And also that length of the life. And so this is still, kidney transplantation is the preferred way of, treating end stage kidney disease. That's what we're talking about it. And actually, we really, that makes sense, right? That what we really want is to try to avoid of going dialysis, right? And try to get them to right away transplantation, which called preemptive kidney transplantation.

Host: Which helps the family and the caregivers. Right. Because as you mentioned, it's a big burden on them.

Judith VanSickle, MD, MHPE, FAAP, FASN: Absolutely. Yeah you know, everybody wants this, but there's a caveat with that.

Host: So good point there. So when we look at transplant, specifically kidney transplant in the pediatric population, what's the current state of kidney graft survival? Is it better today than it was a decade ago? Where are we at with that?

Judith VanSickle, MD, MHPE, FAAP, FASN: This is a two handed question. Again, that's where we are going into this, right? Because if fabulous for the first one year, even for the first three years, we actually almost as here at Children's Mercy, we are 100%. We're very proud of it, that our surgical skills are great. Our immunosuppressive medication is great.

Our graft survival is 100%. Our patient survival is 100%. However, once we reach to that five and over five years, we're losing all of these grafts. And so this is where, we have to recognize, right, that kidney transplantation is not a cure. Kidney transplantation is a treatment that does carry a chronic treatment burden, I think, but most importantly, a chronic acceptance by the patients of need of therapy for lifelong.

Host: Which is what we're here to talk about is some of those barriers to the medical adherence, right? Cause as you said, we have to think of this, especially, as you put it in the older pediatric population, that it's really a chronic thing to be treating. The surgery was one part of that. And I know for you, you've been focused a lot on helping to assess kind of some of those barriers, to medical adherence. So let's talk about that. And I want to start with, an assessment in general. Where do you think we are with medical adherence post transplant? What's your overall feel about that?

Judith VanSickle, MD, MHPE, FAAP, FASN: Bad. I think that's where we really need to get it, especially for that sensitive teenager population between 12 to 17 years of age. And I think how do you make your teenagers to do what it's right things to do? If you have a teenager at home, that's

Host: That's hard. That's hard across the board. It didn't matter anything, right.

Judith VanSickle, MD, MHPE, FAAP, FASN: Right. And so, you know, we have done several studies for that and we do know that these populations are the highest risk for failing an organ. Not just for kidney, for any other across the board solid organ transplantation. This is that time which we need to really focus because, for example, when we did that national trial of the TIKI trial, again, this was a very innovative approach.

We actually quote, there was a bottle, you open up the bottle, and so it, give a trick, right, that so it's indicated that the patient opened up the bottle. So you kind of track them, right? That they were taking in a medication. Now, what do you guess? Was it a successful trial? Were we able to finish it?

Host: I think that would have been very difficult, right?

Judith VanSickle, MD, MHPE, FAAP, FASN: We were not. We couldn't even enroll enough patients because soon as they figured it out that they're going to watch me, they just withdraw from it. I mean, you know, there was obviously really not enough positive reimbursement for the teenager that, you know, they're not stupid. They figured out right away.

And so this is where, again, being sneaky wasn't the answer to go, you know, I'm just going to watch you. I'm going to just, you know, behind you rather than actually going deep into it and really trying to figure out why they are not able to take that medication. What is the barrier to that?

Host: So that's ultimately the question here because as a physician myself, when I hear about issues with medical compliance adherence, and I deal with adults. I don't deal with population you do, but the first thing that comes to my mind, and I'm sure many physicians listening to this is it's maybe it's side effects. It hurts too much. This happens. I get dizzy. But I do think based on some research you've done, it's much more than just that, right? It's not just side effects. So, so what are some of those adherence risk factors?

Judith VanSickle, MD, MHPE, FAAP, FASN: You know, we actually can measure it. So this is already something that it's figured out and they use it, for example, for diabetes, very long. And what you actually can do is that you can hand out a barrier assessment for family, for the parent and for the child, just even on the level of that what is your intent of cooperating with the treatment?

And what you can actually see that when you really go into the tidy part of that mind part is that we really can divide ourself into this three group that you really are a type of person who agree with it and then can be able to accept it. You are one of them that you agree in it, but you're super cautious about it.

And then there are the type of them who is just anxious. They freak out, this is how we call it. They're neurotics with that. And you really need to know what type of patients, what type of kids are these, because to be honest, again, if you have a patient who is already anxious, and then you throw them, right, take 70 medication in the morning and the evening, you might gonna make their life miserable and they want to run away from you rather than actually play with you.

And just for you, this is measured in adult too. So we know adult has the same problem, you know, they have the same trouble with it.

Host: It is across the board. I know you're right. You're referencing, I guess what we call the medication barrier scales, right? The PMBS, the AMB, that's what you're referring to there, right? So we already have a lot of that information, it's just now how do we, as physicians, clinicians, how are we using that information then to improve or let's be honest, optimize adherence.

And so, that's a big question for me for you, Dr. VanSickle, but before we get to that question, I do want to ask you something, especially in the pediatric population. How much does the family influence adherence?

Judith VanSickle, MD, MHPE, FAAP, FASN: Shocker. It's all about the family. When we actually did a questionary with this, asked the kids, who do you listen to mostly. They were listening to their mom and dad, even a teenager, right? You would not believe it. But this is actually really important. And so, several studies, again, have investigated this, not related to the transplant population, but outside of the chronically ill population, that there's a really significant interrelationship between how the parent, the main caregiver, really, handle that illness factor, and really, it's going to set your whole teenager, how are they going to accept it?

And Everest is one of that, study that we use it. And again, there's that illness cognition when you are accepting it, when you understand the perceived benefit of it, quote, I'm taking the medication because I need that kidney for forever, and I don't want to go back on dialysis. Or you take your medication, but this helplessness factor when you, well, I ran out of the medication and my doctor never sent a refill.

I'm just going to wait until they're going to send me the refill. If your parents is likely in that helplessness kind of mode of living, the child going to have a really high chances that they are also going to be like this. If your family, and this is actually, again, very measurable, have a very hierarchic rigid system; the likelihood that your child is actually going to be able to cope, and come up with solution how to make the treatment flexible and doable, is really low. And then lastly, we really forget that, but there's something called familial resilience. And familial resilience is a measurable factor, which sounds silly, but this is when how do you adopt a whole family. So this is not just mom, dad, but you know, grandma, friends, whoever it's in that social network that you have to that actual situation. And so I'm going to give you an example, right? You have to take your older kid to the dentist, but your younger kid needs to do for a swim meet. And then that dental appointment needed to be rescheduled. So, then you're going to hopefully going to have somebody in that social network, that you will be able to flex it and you're going to be able to really, again, make everybody happy. But if you have a family structure that is really isolated, that they do not have a social supportive system. And many times with a chronically ill child, they again, they just burn out so that resilience goes away.

Again, your likelihood that you will be able to develop that positive attitude with a chronic treatment is really low. So in summary, yes, it's almost all about the family.

Host: This has been great, Dr. VanSickle. I'm so impressed with the information you have. So what does this mean? So at the end of the day, if we're trying to optimize medical adherence post transplant, which we all know will affect quality and longevity significantly. I don't think anybody argues that. So what do we do? What is your message then to other physicians out there to do that to optimize that adherence?

Judith VanSickle, MD, MHPE, FAAP, FASN: Like we do with everything, you have to measure first the factors plus the barriers. So you actually have to map it. You have to have that family tell you, right, what is all of the social network system. You have to diagnose if there's any underlying psychosocial problem for that child. ADHD, depression, needle phobia, I can't swallow pill, all of those things you actually have to measure it, recognize, diagnose it, and then, really, there are tools, and this is what we really wanted to talk about, there are barrier assessment tools that we actually use as part of that national approach to improve our medication adherence that NIDES adopted by other solid organ transplant program to where you basically, get to the titty ditty of the teenager and you turn into this whole method of I don't know how to take this medication or I don't know how to make my life really doable with all of this chronic treatment that I need is to you motivating them. And it's very important that you understand you're not wanting to, you know, manipulating them, you need to motivating them. And so, we learned how to do that. You need to be a little bit, a little psychologist and start to do some motivation or interviewing.

Host: Wow, that was great. It sounds like Dr. VanSickle, you've been doing this for a while.

Judith VanSickle, MD, MHPE, FAAP, FASN: These things, we started to do it five years ago, and now we are just getting to the point that we're going to be able to measure it. So I don't have the actual statistical data for my program. I do have from other programs that they used it, and there is positive from parents. There's positive from patients. They liked it because we actually asked them, you know, why you don't like to take this pill. Well, not this way. You're actually going to ask them. Is there any way I can make your life better with medication dosing? And, the teenager gonna tell you that, yes, I don't want to wake up at 7 a.m. Shocker!

Host: That's it right there. Right.

Judith VanSickle, MD, MHPE, FAAP, FASN: Right, exactly.

Michael Smith, MD (Host): So how can we change that to make it easier?

Judith VanSickle, MD, MHPE, FAAP, FASN: So that's the same thing. So like when teenager is a vaping, right? You go in a room and you see that, oh, she's vaping. I have two daughters. And so instead of going off of the whole edge and said, why are you vaping? I might actually going to sit down and take some time with them and actually say, hey, can you tell me, do you know what is the pathophysiological effect of vaping of your lung?

Now, my daughters would just send me up and said, mom, I know it. And, you know, that's why they would never start it. But this is how you need to start. This is where you really actually have to take some time because it's going to pay back. Really, this is what really matters and you can make a huge difference for your patients. And hey, you're going to save some headache for you too.

Host: Fantastic. I mean, this is great. I really appreciate you coming on today, Dr. VanSickle. I know I learned a lot, and I'm sure a lot of other physicians and practitioners have learned, from what you've had to say. So thank you so much. To refer your patient, or for more information, please visit childrensmercy.org to get connected with one of our providers. This has been Transformational Pediatrics with Children's Mercy, Kansas City. Please remember to subscribe, rate, and review this podcast and all the other Children's Mercy podcasts. I'm Dr. Mike. Thanks for listening.