Michael Smith, MD (Host): This is Pediatric Insights: Advances and Innovations with Children's Health, where we explore the latest in pediatric care and research. I'm Dr. Mike, and with me is Dr. Sadia Malik. She's a pediatric cardiologist at Children's Health and Associate Professor at UT Southwestern. And today, we're going to be discussing universal pediatric lipid screening, diving into the recently published research on universal lipid screening in children. Dr. Malik, welcome to the show.

Sadia Malik, MD: Thanks so much for having me.

Host: Let's start with a high-level overview of the recently published research on universal pediatric lipid screening and what the LEAD initiative actually is.

Sadia Malik, MD: It's quite a mouthful, isn't it? Universal pediatric lipid screening. Heart disease is the number one cause of death in the United States and most of the world. And as just to bring it down, it's due to high cholesterol. So when we're looking at lipids, we're really looking at a part of the cholesterol called LDL. So when we came across this lead initiative, we realized that we need to start dealing with high cholesterol in the pediatric age group versus just adults who are coming in for a heart attack. That's what we do. We do preventive pediatric cardiology.

There's a disease called familial hypercholesterolemia, which means you have a family history of high cholesterol. So, it's in your genes. And we all sort of know that to an extent. You know, when patients come to my clinic, they say, "Yes, granddad had a heart attack. I'm on medicine for high cholesterol. And here, I have brought my child." So, it is running in families. And actually, it's something called autosomal dominant, which means if you had it, and your parent had it, and you have the gene for it, each child has a fifty percent chance of having it.

Now, we think that gene mutations or genetic conditions are really rare, but high cholesterol in families is very common. It's one in 250 people. So, you have not a 1% chance, but a one in 250 chance of having familial hypercholesterolemia. And it's obviously higher if it's in your family. You know about it, but you just don't know you have that defect. If you have a child with high cholesterol, as we all know, high cholesterol can sort of block your arteries, and that starts in the second decade of life. So, it starts very early. So, that's why we want to pick it up in children.

And what we found is that even though there are big institutes called the American Academy of Pediatrics and the National Heart, Lung, and Blood Institute that said we should check lipids, specifically cholesterol in children between the ages of nine to 11. So, it's just like every child should get vaccinations, every child should get hepatitis B shots and everything. This was a guideline. But we found that in the United States, which has, you know, very good healthcare for children, only 11% of the children get this blood test done between the age of—well, after the age of nine. I mean, between the age of nine to 18, frankly. So in childhood, this test is not done, and we feel that's a big loss because you've missed those children until they become adults and then get working and, unfortunately, end up in the ER with heart conditions.

Host: The initiative that we're really talking about here, it goes beyond familial hypercholesterolemia. It's the recognition that plaques can start to form, as you said, the second decade in life. So, it's really trying to get a good baseline in somebody so we can follow and prevent better in the future. Is that kind of a good summary of what the research is doing?

Sadia Malik, MD: Absolutely. That's really good. So, it's very easy to find this one in 250 child. It's just a simple blood test. When you're an adult and you go in for your annual, that's what they check for, they check for your cholesterol. It's the same blood test, and we know from levels whether they're high or normal. And if they're normal, your child doesn't have it, and if they're high, then we've been able to pick you up.

And if they're high with a strong family history and they're high enough, then we treat you with the same medicines that we treat adults, and they're very safe in children. They've been studied for decades. And we treat you with the medicines that are called atorvastatin, statins, or Lipitor. That's basically our baseline.

So then, because it's starting in the second decade of life, we are actually able to give the child squeaky-clean arteries for the rest of their life because we won't let the plaques form. So, that's amazing preventive medicine. The medicine has very few side effects. And like I said, most children will not have it. But for the ones that do, we've been able to pick them up early enough that they will be healthy their whole lives.

Host: When it comes to the actual lipid panel that you're testing, are you focusing just on the main ones, triglycerides, LDL, HDL? Or are you doing a more comprehensive lipid exam looking at some of the apoproteins as an example?

Sadia Malik, MD: So in children, we basically do the basic cholesterol panel, which as you've mentioned has the triglycerides, the HDL gives us an idea because that's sort of considered the good cholesterol, whether they have a slight protective effect. And the LDL is what tells us whether we need to start statin therapy or not.

There's one other thing that we check. We don't typically check an LP(a) lipoprotein in children, but the guidelines are now from the National Lipid Association that we check for lipoprotein A. We only need to check once in the child's life for that. And the reason we check it is because it's an association between something called lipoprotein A with the risk of heart disease. However, one in five people have a high lipoprotein A, so it's not a very sensitive test. The second reason we do it, so when I do it, I use it as like a triage that, you know, if somebody has a really high lipoprotein A, then I maybe am going to be a little bit more aggressive in my therapy. The second reason is that there are, new medications that are in clinical trials that, actually treat high lipoprotein A.

And they are in what we call phase III trials, so very close to being FDA approved, but that is in adults. But all children will grow up to be adults. So, it's good to know if they have that risk factor. You can think of lipoprotein A as a risk factor, and then may be eligible for those drugs when they are over 18.

Host: Yeah, it's a good one to know early. I agree. You know, it's more genetically determined. Lifestyle has less effect on it. And so, knowing a baseline early could be very helpful in the future. So, that makes a lot of sense. You mentioned, and I don't remember the percent, so forgive me, but you said, you know, not too many kids are getting screened for lipids, even though that's been the guideline for a long time. Why is that the case? Why aren't more kids being tested knowing that we've had these national guidelines for a while?

Sadia Malik, MD: Yep. That's an amazing question, and that's what the LEAD Initiative was trying to do. So, it was basically the Family Heart Foundation sat down and got three core groups. We had three working groups. One was the parents of children, basically ambassadors, people who have had familial hypercholesterolemia, and they wanted to share what they felt could be done to improve screening levels.

The second group, it was clinicians, administrators. It was looking at what hospital or the hospital systems could do to help with that. For example, medical record systems, electronic health records. And the third group was a group of clinicians to see what could we do, including pediatricians, not just cardiologists, what could we do to help educate and increase this really, really low screening rate. And I think it helped to get it from all different angles. Because otherwise we could just say, "Hey, let's just educate the pediatricians and, you know, call it a day." But what the family group sort of sat down with is they came up with real-life experiences saying, "Sometimes we tell our pediatrician, you know, I had a heart attack at 35, and can you do my care?" The pediatrician will be like, "You know, kids don't have high cholesterol," because it's not something that, you know, they're familiar with the guidelines possibly, or they just feel that, you know, this child is, you know, only eight years old or nine years old, and it's just too young.

So, I think, you know, the LEAD Initiative came up with different action plans. One was, you know, educating families to be more advocate for themselves. One is, you know, putting flyers up in clinics so that families get more educated about it, the ones that have not been affected.

From a systems point of view, there would be prompts in electronic health records such as Epic that would, you know, alert a physician, "Okay, this child is nine years old. You know, this is what they need." It's a little bit like the alerts that pediatricians have, you know, for all their developmental milestones and all their clinical stuff when a child, you know, from the newborn to adolescence. And then, from a clinician standpoint, you know, more webinars at the meetings, at the national meetings, in the clinic to have what we call FH champions, familial hypercholesterolemia champions. So, it could even be somebody who's interested in this in the clinic. It could be a nurse practitioner. It could be a nurse. It could be even your scheduler who's like, "Oh, your child is this. Would you like to learn more about high cholesterol and the lipid test? And let's go ahead and have it done today." So, when all three groups got together, first they were separated and talked about their own thoughts and guidelines, and then we all got together and wrote this article.

Host: This brings me to this question. You know, the research seems to mark a shift from using the word recommended guidelines or recommended lipid profile checks in kids to the word implemented, being more active in this initiative is what it sounds like to me. Is that something that was intentional, is moving from recommended to implemented?

Sadia Malik, MD: Absolutely. I mean, when you talk to pediatricians, if they don't have what we call point of care in their clinic, which means the child can just get a little pin prick and you can check the cholesterol. But of course, getting a point-of-care machine, getting your staff trained on it, every pediatrician's office or family practice office will not do that. But if they don't have that, they say, "Well, you know, sometimes we write for it. The patient may, may or may not go to the clinic." And then, there's that part about the follow-up. Did you see it? And then, where are you going to refer them to? There are not that many lipid specialists. So, every stage of implementation is sort of, you know, we're trying to cut through those barriers, how to make it easier on the parent to ask for it, how to make it easier for the pediatrician to remember to do it, how to make it easier, if the lab can just send it to electronic health records, how to make it easier at every step so that that child can get the care they need if they do need it.

Host: How often do you think pediatricians, like general pediatricians, may not understand the impact that early detection and treatment can have on a child when they get to adulthood? You had mentioned kids can be treated, right? And you're setting them up for squeaky clean arteries as adults. Do you think a lot of pediatricians understand that and appreciate that?

Sadia Malik, MD: I feel that they do understand it. But, you know, I think one of the factors may be that there's so many things that the pediatrician has to do in a short time period that that blood draw is sort of not at the top of their minds. So, I think every pediatrician has come across cases where there is a strong family history of heart disease, and that sort of usually triggers them, and they say, "Okay, premature heart disease, less than 50 years of age in a family member. Let me do it." But I think it should be universal screening, which is what we've talked about. You don't know because a lot of parents don't know they may have it. A lot of parents don't know their family history well. Somebody died suddenly, they don't know the cause. So, it has to move from the family history prompt, which may or may not be that accurate, to "You're nine years old. Why don't you go get this blood test? And, you know, the EHR, the Epic has shown this sign that says, "Okay, nine, do this. I'm going to send you. And hopefully, you know, everything is going to work as it should, very, very seamlessly," just like vaccinations work.

Host: Specifically, in familial hypercholesterolemia, you know, the textbooks teach us that there are, you know, in kids, usually outward signs that there's really high cholesterol, right? You talk about skin changes, changes in the eyes, et cetera, et cetera. But, you know, that's textbook stuff. You know, out in the real world, a lot of that can be easily missed on clinical exams. Is that one of the reasons we're pushing harder as well to get kids screened earlier, we may be missing some of those early physical signs?

Sadia Malik, MD: There's two types of familial hypercholesterolemia. The textbooks actually talk about a very severe type. So if both parents have it, you get something called homozygous FH, and that's when you have the xanthlasma and the other signs. And that's actually one in 10,000 births. So, that's pretty rare. We see a lot more common is the heterozygous one, and those children will not have physical signs. In fact, that's one of the reasons why we sometimes, if there's not a strong family history of a cardiac or a stroke event, it's hard for us to get the parent of a 12, 13-year-old to start statins because the child looks healthy, the child is not overweight, the child does not have any signs. As far as the parents know, maybe they didn't ever get tested, so they don't think they have it. But the child may have, you know, a very high cholesterol level, which means they do need to be treated. This is a child who will look absolutely normal to you the, vast, vast majority of the time, because the heterozygous one that we see a lot more often is basically an asymptomatic child. It's an asymptomatic child.

Host: They go undetected.

Sadia Malik, MD: Until adulthood, yeah, they may never have signs. The common heterozygous familial hypercholesterolemia, the parents may not have signs, so we don't know unless they got their cholesterol tested.

Host: Another good reason to do the early testing at the end of the day.

Sadia Malik, MD: Absolutely.

Host: Yeah. Now, what role do pediatric cardiologists and other pediatric specialists play in expanding access to universal lipid screening and, you know, helping providers, you know, primary providers get more of this screening done? How are we getting this message out? How are we all working together to implement this type of screening across the board, across the nation?

Sadia Malik, MD: Foundations like the Family Heart Foundation, they do a lot of webinars. We try to get it. So, physicians need CME. And if we can provide CME related to pediatric cholesterol lipid conditions, I think that's the fastest and the easiest. If we can give them flyers that they can put up in their clinics so that the patient can see it, and therefore they get recalled, the physician sees it, I think really it's just all about the education. Like you said, you know, you've got a healthy nine-year-old coming into your clinic. What are the things you need to do? Okay. Even if there is no family history, I need to get this universal lipid screening, which is recommended, which is covered by insurance, which is, you know, once it's normal, it's normal. It's a one-time thing. And if it's abnormal, then, you know, there's sort of a pathway that we put in our article. It tells the pediatricians they don't need to immediately refer. They can talk about lifestyle if it's borderline levels. That lifestyle changes bring the LDL part of cholesterol down t10% to 15%. Sometimes that's all it needs. The algorithm is that they do the test. They can even do it non-fasting. Because if it's normal, it's going to be normal. If it's abnormal, then they can do a fasting one. So, they can do it any time the child gets into clinic. If they have a lab nearby, they can do point of care, which is a good screening tool.

And then, of course, we've shown them what to do with it. And then, of course, after three months, if it's still high, then I'll refer to a lipid specialist, which can be an endocrinologist or a cardiologist.

Host: So, what do you think? You know, is there one thing clinicians can take today to improve lipid screening rates? You know, identifying kids that definitely have problems. What would you encourage them to do? What would be that one action?

Sadia Malik, MD: If they're nine, get the blood test. I mean, I can't make it simpler than that. If you have a child who's nine or older, I mean, maybe it's not on your computer and the parents said they got some sort of blood test, you know, maybe it's a 13-year-old, just get it. You know, if you don't see it documented in your system, rather than trying to find it from another system or another lab or something, just get it if you-- especially if you're going to get another blood draw. Even if you're not, it's a guideline. It's a universal lipid screening. It doesn't matter if they say that all our family has lived till 100. It's okay, just get the test and be sure that this child is not going to be affected.

Host: Fantastic information. Is there any last thing you'd like to say to the audience?

Sadia Malik, MD: There's blocks at every level. but it is something that you can actually save that child from a lot of angst, in their 30s, 40s, 50s with just a simple blood test. So, it's not hard. Some people are looking at newborn screening, trying to add it to, you know, newborn blood tests, but it's still not happened. So until then, it is something that we would strongly suggest. It's a simple test and it can really help your patient in the long run.

Host: Again, fantastic information. Thank you so much for coming on today. I really appreciate it. You can find more information at childrens.com/cardiology. And if you found this podcast helpful, please rate it, review it, and share the episode, and follow Children's Health on your social channels. This is Pediatric Insights: Advances and Innovations with Children's Health. Thanks for listening.