Even when correct, diagnoses can harm kids

baby getting light therapy

Newborns often get light therapy when they’re diagnosed with high bilirubin levels. But the child may not benefit from the treatment. 

Stephanie Barbary/Shutterstock

Laura Sanders is away on maternity leave.

Many, perhaps most, babies spit up. One study has estimated that two-thirds of 4-month-olds regurgitate at least once a day. It can be upsetting to parents when their kids lose meals, often forcefully, so they seek help. Physicians, in turn, want to find the cause of the symptoms and sometimes diagnose babies with gastroesophageal reflux.

So far, so good — babies who vomit a lot have reflux. The diagnosis is correct. The problem is that such diagnoses often lead to treatments, and those treatments don’t always benefit children. In the case of reflux, some parents change infant formulas, mothers may stop breastfeeding and some parents give babies medicine.

None of these responses to a reflux diagnosis has been found to have positive impact on children’s health. In fact, a study in babies found no difference between the reflux drug Prevacid and a placebo — except that more babies who took the drug got infections of their lower respiratory tracts. Most babies grow out of reflux without treatment.

Reflux is a classic case of overdiagnosis, says Eric Coon, a pediatrician at the University of Utah in Salt Lake City. Once a condition is diagnosed, parents and doctors tend to want to treat it, even if children would do just as well — or better — without treatment.

“We’re used to putting all this effort into making the correct diagnosis,” Coon says. “We don’t often enough stop and think, does finding this correct abnormality really benefit the patients? And does the benefit outweigh the harms?”

With adult patients, doctors have begun to recognize overdiagnosis as a problem, with the most well-known example being prostate cancer. A prostate cancer screening test may chance upon a slow-growing cancer that, if left alone, would never have made a man ill. But the diagnosis may lead him to undergo radiation or surgery, which carry risks. In part because of overdiagnosis, the U.S. Preventive Services Task Force does not recommend prostate cancer screening to men who lack symptoms.

But overdiagnosis is rarely discussed in pediatric settings. Coon and his colleagues want to change that. In the November Pediatrics, they list 15 conditions, including reflux, for which they found evidence of possible overdiagnosis.

Another example is high levels of bilirubin, a product of red blood cell breakdown. Doctors are on alert for newborns with yellowing eyes or skin, a sign of high bilirubin levels, because jaundice can lead to the condition kernicterus, with brain damage and sometimes death. A serious condition for sure.

It’s fairly common for a newborn baby to stay in the hospital, or go back there, for light therapy for jaundice. But even though bilirubin screenings have become nearly universal in the United States, and the use of phototherapy has gone up, there has been no decrease in deaths from kernicterus.

Most babies with high bilirubin do not benefit from treatment, Coon and his colleagues say. And it’s stressful for babies and new parents to be apart during newborns’ first days of life. The researchers even point to two preliminary studies finding a possible link between light therapy and childhood leukemia.

The harms to children can sometimes go beyond the physical effects of unneeded therapy. “All diagnoses, whether beneficial to the patient or not, change the perception of the child,” the researchers write. A 2010 study they cite found that, compared with families in which a baby had no jaundice, parents of infants diagnosed with the condition sought more medical attention even after the child had recovered. “Parents perceive that their children are sicker than they really are,” Coon says.

The urge to diagnose and treat is strong among doctors and perhaps equally so among parents of small children. “We’re concerned about missing something,” Coon says. He advises parents to stop doctors before they run diagnostics and to ask questions such as, “How will my child benefit from these tests? How might my child be harmed? Not just in the short term but in the long term.”

Many physicians, he says, don’t pay enough attention to the risks of overdiagnosis. “With a diagnosis, it can be very hard not to intervene even when the harms outweigh the benefits.”

Lila Guterman is Science News’ deputy managing editor for departments. Follow her on Twitter: @LilaGuterman

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