Cholesterol tests are well-established as an important part of a routine health screening – for adults. For young people, it's another story.

Relatively few children and teenagers are screened for cholesterol issues. Several factors, including differences in medical experts' recommendations, might confuse parents and even their primary care physicians, cholesterol experts say. Whatever the cause, it means opportunities to spot a serious health risk are being missed.

Overall, about 1 in 5 adolescents has a cholesterol level that is out of a healthy range, said Dr. Sarah de Ferranti, a pediatric cardiologist at Boston Children's Hospital. "So this is definitely an issue that affects children," she said. "Fortunately, not all of those abnormalities are sustained over time, and not all need medication, and many can be addressed with following a healthy lifestyle. But definitely, kids are afflicted with abnormal cholesterol values."

De Ferranti, who also is an associate professor of pediatrics at Harvard Medical School, was part of an American Heart Association and American College of Cardiology task force that wrote the latest cholesterol guidelines in 2018.

Those guidelines support the idea of checking for a cholesterol abnormality once between ages 9 and 11 and again once between ages 17 and 21, de Ferranti said. Earlier screenings, as early as age 2, are reasonable for people with a family history of early heart disease or very high cholesterol.

That's in line with recommendations from the National Heart, Lung, and Blood Institute and the American Academy of Pediatrics.

But testing rates in children and adolescents have been low. Estimates vary, but a study published in July in JAMA Network Open found that only 11% of people ages 9 to 21 are screened.

By contrast, more than 70% of U.S. adults had received cholesterol screening within the past five years, according to a 2023 study in the Journal of the American Heart Association.

Healthy blood cholesterol levels are considered essential to heart health and are associated with lower risk of heart disease.

"Bad" LDL cholesterol can contribute to fatty buildup, or plaque, in arteries, which can lead to a heart attack or stroke. "Good" HDL cholesterol helps regulate LDL cholesterol. Triglycerides are a type of fat that, combined with high LDL or low HDL cholesterol, is linked with artery plaque.

Most people can keep levels healthy by eating a nutritious diet that emphasizes foods that are low in saturated fat and high in fiber and by getting enough exercise. Federal guidelines recommend at least an hour of moderate- to vigorous-intensity physical activity a day for kids ages 6 to 17.

Evidence is accumulating to show a connection between childhood cholesterol disorders – referred to as lipid disorders, or dyslipidemia – and cardiovascular disease in adults, de Ferranti said. A study published in Circulation in 2023 linked elevated childhood cholesterol levels with an increased risk of problems such as heart attack and stroke in midlife.

In addition to diet and exercise, genetics can affect cholesterol levels. The primary goal of testing children is to screen for that inherited issue, said Dr. Emily F. Gregory, an assistant professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.

"It's looking to pick up a disease called familial hypercholesterolemia, which presents rarely but with extremely high levels of cholesterol starting at a very young age," said Gregory, who also is an attending physician at the Children's Hospital of Philadelphia. She examined trends in pediatric cholesterol testing in a study published in 2020 in Circulation: Cardiovascular Quality and Outcomes.

The inherited condition prevents the body from removing LDL cholesterol from the blood. People with untreated familial hypercholesterolemia have 20 times the risk of developing heart disease, with plaque buildup sometimes detected in the heart arteries as young as age 17. "Despite its name, you don't pick it up super well if you just screen for family history," Gregory said.

Estimates vary, but de Ferranti said the most common form of familial hypercholesterolemia affects an estimated 1 in 250 people in the U.S. The rate differs by ethnicity; it's estimated to affect 1 in 80 French Canadians and South African Afrikaners, but fewer than 1 in 800 Icelanders, studies have shown.

But according to AHA statistics, the condition is diagnosed in fewer than 10% of those who have it. Their first symptom of familial hypercholesterolemia, de Ferranti said, might be a heart attack in young adulthood.

"We want to prevent that," she said. "And the only way to do that is to identify this lipid abnormality through screening and then to go ahead and treat, when necessary, both with lifestyle and oftentimes with medication."

A 2019 study published in the New England Journal of Medicine showed that treating children with familial hypercholesterolemia with cholesterol-lowering statin drugs safely reduced the cardiovascular risk in adulthood. Many other studies support the benefits of lowering cholesterol early in life, de Ferranti said.

But several things get in the way of testing cholesterol in all children.

The influential U.S. Preventive Services Task Force considers current evidence "insufficient to assess the balance of benefits and harms of screening for lipid disorders" in people age 20 or under without symptoms. Clinicians, it said, "are encouraged to use their judgment when deciding whether to screen for lipid disorders in children and adolescents."

Gregory said the task force's lack of an endorsement for universal testing does not mean testing is considered harmful – just that the current evidence hasn't met its high standard for making a recommendation. "They like to see studies that really show how that recommendation is going to influence population health over time for important outcomes," she said. Collecting evidence for such a recommendation can be time-consuming, challenging and "very expensive."

Another barrier, de Ferranti said, is that pediatricians are busy. "When they see a patient in the office, they've got a long list of things that they need to sort through," she said, and those problems might seem more urgent than screening for a rare illness.

But inherited high cholesterol isn't obvious, de Ferranti said, and without universal screening, problems will be missed. "And a disease that affects 1 in 250 isn't that rare," she said.

So what's a parent to do?

"It's important for parents to know that these recommendations are out there and to discuss them with their (child's) physicians," Gregory said. If your child is of the right age and is getting a blood test anyway, "I think there's certainly a good argument to add on the cholesterol."

Most of the time, an out-of-range reading doesn't mean a child has inherited a cholesterol problem, Gregory said. The first line of treatment is thinking about lifestyle changes, including getting enough sleep. "Even if you have a slightly abnormal cholesterol test as a 9-year-old, chances are the first line of treatment is going to be to talk about some of those behavior changes that could make a big difference now and throughout your life."

De Ferranti added that "if you know that there is a family history of cholesterol or heart problems in your family on either side, you should bring that to the table" when you visit the pediatrician.

Meanwhile, she said, physicians need to be aware of the value of cholesterol screenings in their young patients. "Pediatricians need to know that they have the opportunity to find a condition that can have long-term health effects."

De Ferranti senses that the consensus has shifted toward more testing. "There is more and more recent evidence accumulating to show this connection between childhood cholesterol disorders and cardiovascular disease in adults, and a lot of focus on the part of increasing screening rates," she said. "Watch this space, because I think more is coming."

Gregory said that experts have been debating for decades about cholesterol screening in young people, so she encourages pediatricians to be aware of the current guidelines and latest findings.

"It's clear that really smart, talented physicians and health care providers do have some level of disagreement" on the importance of cholesterol testing in all children, she said. "So I think it's a good idea to talk to families about that and to make sure they understand why they might want to do this."

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American Heart Association News covers heart and brain health. Not all views expressed in this story reflect the official position of the American Heart Association. Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved.