Controversy Over Cholesterol Testing for Children

New guidelines from the NHLBI and the American Academy of Pediatrics recommend that all children between the age of 9 and 11 should undergo cholesterol screening. Screening should then be repeated at 17 and 21 years of age. The new guidelines are scheduled to be officially introduced by panel member Patrick McBride at the AHA in Orlando on Sunday.

“Previous targeted screening missed more than 50 percent of children with high cholesterol,” McBride told ABC News. “Atherosclerosis begins very early in life, even in infancy for children with genetic cholesterol problems. So increased screening is a necessary step.”

But the guidelines are likely to meet with considerable skepticism. One highly knowledgeable expert told CardioBrief that the new recommendations are not justified:

I do not think it is evidence based.  I think it is a real reach.  It muddles together different messages about finding genetic dyslipidemias – which need drug treatment – and improving lifestyle.  For those without genetic dyslipidemia, you don’t need screening to advise about  healthy lifestyle changes, and there is zero evidence that scaring people  – especially children – leads to successful behavior change.  For those with genetic dyslipidemia – lets remember FH only affects 1/500 – 2/3 are picked up by targeted screening.  So for every 750 kids we screen, we find one kid with FH and put him or her on a drug 10 years earlier than we otherwise would have.  Not much of a gain for the expense, pain, anxiety, and potential labeling/stigmatization of all the others.  And we do not know the safety of these drugs in teens – we take for granted that they are safe because drug companies and the FDA said so.  This is a distraction from the real changes our society needs, increases the cost of health care, and is a huge boon for the makers of cholesterol drugs and screening tests.  I would refuse to let my kids get screened.”

Two Year Delay?

One other interesting sidenote to this story: although the news broke two days earlier than anticipated because of some aggressive reporting from the AP (here’s  a look behind-the-scenes), the guidelines have been languishing at the NHLBI for two years or more. Note that the publication of the guidelines in Pediatrics discloses that the manuscript was accepted for publication on August 4, 2009. I have been told that several frustrated panel members threatened to resign over NHLBI delays in moving forward with the project.

Click here to read CardioBrief’s previous coverage about cholesterol screening guidelines in children from the National Lipid Association.


  1. Like the anonymous “knowledgeable expert” I also have mixed feelings about this. However, he/she seems to be making an assumption that I don’t think is warranted: namely, that all the FH patients would be diagnosed in early adulthood anyway. This is not currently happening — FH is very underdiagnosed, with sometimes unfortunate consequences. Many people with FH are not diagnosed until they are in their 30s and 40s or until they experience an event. In fact, that is one of the reasons why many kids with FH are not diagnosed — the parent with FH doesn’t know he or she has FH and is too young to have had an event. So weigh that in the balance, along with the overtreatment, stigmatization, cost and anxiety.

    I don’t know all the reasons for underdiagnosis of FH in adults, but presumably many adults, especially young adults, don’t have the same regular relationship with a physician that most children have with their pediatrician.

  2. Good comment by MM.

    The expert never said we’d pick them all up in adulthood. He/she simply said that since we pick up 2/3 of genetic dyslipidemia with selective screening, he/she did not think we should screen the entire childhood population to try to find the rest of the kids with FH.

    Perhaps we should put more effort into screening the 20 year olds, or the parents of the kids, but not all the kids. And even if we screen all the kids, we’ll never get to 100% as the remaining adults who do not know they have FH – urban and rural poor and the under-insured, for example – do not have 100% screening and follow-up with pediatricians either.

    With screening we’ll find more, but we have to balance the financial and emotional costs.

    It seems to me that we should study something like this before putting it as a strong recommendation in a guideline – not guess at what we think will happen.

    For the non-FH kids – their lipid levels drop in adolescence anyways, which further reduces the value of screening and intervening.

  3. In the interest of full disclosure, my 18-year-old daughter has FH and it was picked up when she was 8 when her pediatrician checked her total cholesterol and then sent her for a lipid profile.

    I think there are some real trade-offs here. I actually agree that treating kids with FH at age 10 vs. age 20 is not that important in most cases. But before you screen the 20-year-olds, first you have to catch them. As we all know, 20-year-olds are immortal and going to a doctor to have their cholesterol checked is the last thing on their minds. So I am interested in practical terms how you would ensure those 20-year-olds get diagnosed.

    I don’t think there are easy answers here. FH is a disease with high morbidity and mortality that also has a very effective treatment (statins). So it is just the kind of disease that we would like to diagnose early. Unfortunately, to do that we need to do cholesterol screening of the general population. 10-year-olds, who taken to the pediatrician for a yearly checkup by their parents, are easier to find and screen than 20-year-olds.

    The downside is that many kids without FH will end up getting treated for lipid abnormalities that are less extreme and that probably could have waited until they were adults.

    Maybe a compromise position would be to do the screening at, say, age 14 or 15.

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