Heart disease is the leading cause of death in the U.S., but it’s not something we usually associate with kids. In many cases, however, the seeds of heart attacks and strokes may be sown in childhood.
That’s because high or abnormal cholesterol levels, which are a major risk factor for heart disease and stroke, are not uncommon in kids. “People may feel that cholesterol is mostly an adult issue, which is not correct,” says Dr. Nivedita Patni, a pediatric endocrinologist at Children’s Health in Dallas and an assistant professor of pediatrics at UT Southwestern Medical Center.
About 1 in 5 children ages 6 to 19 years in the U.S. have high or abnormal levels of cholesterol. “It’s far more common than a lot of us even realize,” says Dr. Julie Brothers, a pediatric cardiologist at Children’s Hospital of Philadelphia.
Without a blood test, high or abnormal cholesterol can be asymptomatic and hard to detect, making it a hidden risk factor in many children. “I think it’s important for parents to be aware that their children could have high cholesterol,” says Dr. Stephen Daniels, pediatrician-in-chief at Children’s Hospital Colorado and chair of the department of pediatrics at the University of Colorado School of Medicine.
The perils of high cholesterol in kids
Cholesterol isn’t inherently good or bad. It’s a type of fat—or lipid—that’s found in all the cells of our body, and it plays a crucial role in synthesizing many useful substances that our body needs. Blood contains different types of cholesterol and lipids, and having abnormal levels of these lipids is known as dyslipidemia.
Dyslipidemia can cause the buildup of plaques made of cholesterol and fats in our arteries—a process known as atherosclerosis—that increases your risk of heart disease and stroke. “There is a very strong, positive correlation between your cholesterol level and heart disease,” says Brothers.
Childhood heart attacks and strokes are thankfully extremely rare, but the larger issue is that kids with dyslipidemia tend to become adults with dyslipidemia. “Even people in their early 20s can have atherosclerotic plaque, and if those kids had been identified at a young age, we probably could have prevented that,” says Brothers. Not only are these kids more likely to suffer heart attacks and strokes when they grow up, but they’re also likely to suffer them earlier than they would have otherwise.
Current pediatric guidelines are aimed at detecting these kids early, with universal screening of healthy kids and selective screening of kids who may have specific risk factors for dyslipidemia. But screening levels remain relatively low in the U.S., and there are likely still lots of children whose dyslipidemia remains undetected.
The good news is that if detected early, high or abnormal cholesterol can often be successfully treated. “We have very safe and effective ways to treat kids, so if we can identify them younger, we can get them treatment earlier,” says Brothers. “We have tools that we can use to help them not have heart attacks when they’re in their 40s and 50s. That’s our goal.”
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Robust treatment options
Childhood dyslipidemia exists in two basic varieties, depending on whether its cause is genetic or lifestyle-related. Genetic dyslipidemia occurs because of genetic mutations that increase the risk of abnormal cholesterol levels. The most common genetic cause of high cholesterol is called familial hyper-cholesterolemia, and it occurs in about 1 in every 250 people in the U.S. “It’s a relatively common genetic abnormality and may cause very high cholesterol from an early age,” says Daniels. Familial hypercholesterolemia is caused by a genetic defect that results in high levels of so-called bad cholesterol, or LDL, in the blood.
“Many of the kids that we see with familial hypercholesterolemia are perfectly normal weight, and you would not expect based on looking at them that they would have high cholesterol,” says Daniels.
Lifestyle-related causes of dyslipidemia, on the other hand, are usually associated with excess weight and obesity. Childhood obesity has more than doubled in children and tripled in adolescents over the past 30 years, and now affects about 1 in 5 children in the U.S. “Since obesity is quite prevalent in children, that form of dyslipidemia is also relatively common,” says Daniels. “We’re seeing kids who are preschool age who are having substantial weight gain, and can have dyslipidemia related to that.” These children usually have low levels of HDL, so-called good cholesterol, and high levels of a different type of fat known as triglycerides.
Regardless of the cause, the prognosis for children with dyslipidemia is quite good. “It’s something we can manage with diet, lifestyle, or if we need to, medication,” says Brothers. “Almost always it’s starting with, ‘Hey, let’s make this little change, let’s add a fruit with breakfast, and maybe let’s start doing 5,000 steps a day. Let’s work on setting goals like that,’” she says. Brothers recommends cutting down on saturated fats, limiting sweetened drinks, increasing fiber intake, and trying to include at least one fruit or vegetable with every meal and snack. Getting at least an hour or more of moderate-intensity physical activity every day is also important.
But for some children, particularly those with genetic causes of dyslipidemia, lifestyle changes may not be enough. “They can be on a quite good diet, but still have very high cholesterol,” says Daniels. For those kids, doctors would typically think about prescribing medication after age 9 or 10, he says.
Typical treatment consists of lipid-lowering drugs known as statins, although doctors do have a few other options that they can use either by themselves or in combination with statins. “It’s been shown in long-term studies, with about 20 or 30 years of data available, that kids who started statins had a heart-healthy lifestyle later and it decreased their cardiovascular disease later,” says Patni.
But researchers first need to detect the kids with high or abnormal cholesterol, and that’s where screening comes in.
The significance of screening
Current guidelines call for a combination of universal screening of healthy children, and selective screening of those at particularly high risk. Doctors selectively screen kids as young as age 2 if they have a family history of high cholesterol, heart disease, or stroke, or if they are obese or overweight. Other high-risk groups include children who have had heart or kidney transplants or who have disorders such as diabetes, chronic kidney disease, or Kawasaki disease.
But selective screening still misses a lot of kids with dyslipidemia, says Brothers. That’s why current guidelines recommend that all children ages 9 to 11 years be screened for high or abnormal blood cholesterol levels, and then recommend another round of universal screening at ages 17 to 21.
Cholesterol and lipid levels can decrease during puberty, so screening before and after puberty can provide a more accurate assessment. “That gives you the best reflection of what the adult cholesterol’s going to be,” says Daniels.
Age 10 is also when plaque formation is thought to become more aggressive, and around when statin medications are usually first prescribed. “So if you want to identify someone and start medicine at around that time, that’s a perfect age,” says Brothers.
The current screening guidelines do seem to have made a difference. “The selective and the universal screening both have been able to pick up kids earlier than before,” says Patni. That may have helped children receive earlier treatment, reducing their risks of heart disease and stroke as adults. But there are indications that many more doctors could be following these guidelines.
Read More: 7 Ways to Lower Cholesterol
Not so universal in practice
In real-world pediatric and general practices, screening levels are improving but could definitely be better. In a recent study, Brothers found that screening was still being performed only in a minority of children. “The adherence is surprisingly low, and even in the patients that would be considered higher risk it’s still quite low,” she says. It’s unclear why that is, but Brothers suggests that many pediatric offices may not have the equipment in-house to quickly check lipid levels.
Some doctors may also just be slow to adopt the guidelines. “It takes years, sometimes decades, for guidelines to be incorporated in the practice,” says Daniels. It doesn’t help that the benefits of detecting and treating dyslipidemia in kids may manifest only once they’re middle-aged. “From a pediatrician’s perspective, I think it’s sometimes a little bit hard to wrap your mind around something that occurs so much later in life,” says Daniels.
Improved childhood screening for dyslipidemia is likely to play an important role in preventing its long-term health consequences. “I think that it would be better if more pediatricians and more family physicians were following the guidelines,” says Daniels. Familial hyper-cholesterolemia is common enough that “every pediatric practice should have multiple children in that category,” he says. If you don’t identify them, you can’t treat them.
The COVID-19 pandemic is thought to have reduced the frequency of pediatric primary-care visits, which likely also reduced dyslipidemia screening frequency. It’s a double whammy, because the pandemic may itself have exacerbated dyslipidemia in children.
Researchers are still collecting data about the effects of the pandemic, but anecdotally, some are seeing an increase in high or abnormal cholesterol in children. “I think for the lifestyle and obesity-related dyslipidemia, there probably has been an impact of COVID,” says Daniels. One reason could be that children have generally been less active and had fewer opportunities for physical activity during the pandemic. “So I think in families we’re seeing weight gain that we hadn’t seen before COVID, and then as a downstream effect of the weight gain, we often see high triglycerides and low ‘good’ cholesterol,” he says.
The hope is that any such pandemic-related increase in dyslipidemia can be reversed relatively quickly. “We’re going to give everybody some grace right now—it’s been a really rough couple of years—and then we’re going to work on getting them back to health,” says Brothers.
The bottom line is that detecting high or abnormal cholesterol early could have major effects on long-term health outcomes. “Ultimately, we want our kids to far outlive us, and we want our kids to not have heart disease and to not have heart attacks and strokes,” says Brothers. “Our goal is to really, really decrease that risk, and it starts in childhood.”
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