Experts disagree on screening children for a disorder tied to high cholesterol

February 6, 2012

One in 500 kids has an inherited disorder that causes high levels of LDL (“bad”) cholesterol that may require medication to control. However, since the problem doesn’t create observable symptoms, as many as half of these kids don’t know they have the condition. To help identify these children, late last year an expert panel convened by the National Heart, Lung, and Blood Institute recommended that all children be screened for high cholesterol, once between the ages of 9 and 11 and again between ages 17 and 21.

Reaction to the guidelines, which were included as part of a larger NHLBI report on improving cardiovascular health in children and adolescents, has been mixed. Some clinicians and researchers say universal screening is an important tool not only to help identify children who are genetically predisposed to high cholesterol, a condition called familial hypercholesterolemia, but also to pinpoint others who could benefit from treatment, including those with high LDL related to being overweight or obese. Working with these kids to eat more healthfully and to exercise more may reduce the cumulative negative effect of high cholesterol on their cardiovascular systems and lead to fewer heart attacks and strokes later in life, the experts say.

Others, including clinicians who authored a pair of articles in the Journal of the American Medical Association last month, express concerns that screening may do more harm than good. To identify the relatively small number of kids who really need medical treatment, doctors cast a wide and expensive net that identifies as at risk many children with elevated cholesterol who will not develop heart disease earlier than the norm, says Matthew Gillman, director of the obesity prevention program at Harvard Medical School, who co-authored one of the articles. Some of those children will probably be needlessly put on cholesterol-lowering medications, he says.

The U.S. Preventive Services Task Force, an independent group of primary-care providers that evaluates the evidence for clinical care, concluded in 2007 that there isn’t enough evidence to recommend for or against routine lipid screening in children and adolescents.

Research has shown that 10 to 13 percent of children have elevated cholesterol levels. Treatment for the vast majority should focus on lifestyle interventions, says Stephen Daniels, chairman of the Department of Pediatrics at the University of Colorado School of Medicine, who led the NHLBI panel. A much smaller number of those children, the ones with a genetic predisposition to high cholesterol, may need to take a statin, he says.


Apparatus and blood sample on a test tab. (WILL & DENI MCINTYRE/GETTY IMAGES/PHOTO RESEARCHERS RM)

Until the new guidelines were released, the American Academy of Pediatrics recommended cholesterol screening in children primarily based on family history. If a child had a father who had heart disease or a heart attack before age 55, for example, screening would be indicated. Children who had risk factors such as obesity or diabetes were also candidates for screening. The AAP has since endorsed the new NHLBI guidelines.

“Family history doesn’t really catch everybody” with familial hypercholesterolemia, says Sarah de Ferranti, a member of the AAP committee on nutrition and the director of preventive cardiology at Children’s Hospital Boston. In addition, she says, “Anecdotally, I can tell you that when someone comes to my office and they know they have high cholesterol values, they’re much more focused.”

That’s the case with the McFeeley family. Bill and Carolyn McFeeley, of Mullica Hill, N.J., had always considered themselves very healthy — until Bill had a heart attack two years ago at age 47. The pediatrician for their three children checked the kids’ cholesterol and found that while levels for the two girls — Chelsea, now 17, and Chandler, 13 — were normal, Chase, 10, had slightly higher values: His total cholesterol was roughly 210. (In general, anything over 200 is considered high.)

Now Chase has replaced his beloved egg salad sandwiches with turkey and fat-free cheese ones. “If we can get ahead of it and keep Chase healthy, it means a lot to us,” says Bill.

Julie Brothers, medical director of the lipid heart clinic at Children’s Hospital of Philadelphia, sees Chase once a year now and says she hopes they can manage his cholesterol without medication. “None of us wants to slap medication on anyone,” she says.

Maybe not. “But if you’re going to test every child, it’s a sure bet you’re going to be medicating more kids,” says H. Gilbert Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice, who has written extensively on the problems created by aggressive screening.

Research on the safety and effectiveness of statins in children is scant; studies that have looked at statin use haven’t enrolled more than a few hundred kids, and none has followed them for more than two years, say experts. “We don’t know what taking a 10- to 11-year-old kid and putting them on statins long term will do,” says Frederick Rivara, division chief of general pediatrics at Seattle Children’s Hospital and co-author of one of the JAMA articles.

Gillman says that while early intervention to prevent heart disease is critical, screening all children may not be the best way to do it. As an example, he cites a study that he co-authored last year examining the cost-effectiveness of blood pressure screening in adolescents.

“The bottom line of that study is that population approaches like taking the salt out of food are more effective and less costly than any screening program,” he says.

This column is produced through a collaboration between The Post and Kaiser Health News. KHN, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health-care-policy organization that is not affiliated with Kaiser Permanente. E-mail: questions@kaiserhealthnews.org.

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