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Newborn Screening Education Materials Lacking: Study

Parents aren't getting enough or the right kind of information, researchers say

WEDNESDAY, May 4, 2005 (HealthDay News) -- Parents aren't getting enough information about the genetic screening tests performed on their newborns.

That's the conclusion of a study appearing in the May issue of Pediatrics that found the materials explaining newborn screening tests varied significantly from state to state, and none of the materials contained all of the information recommended by the American Academy of Pediatrics (AAP).

"We were looking for key elements from the AAP task force recommendations," said study co-author Kathryn Fant, a researcher at the University of Michigan. "The main finding was that there were a few things missing that could be really beneficial."

The right materials, she said, could make it "possible to decrease newborn parent anxiety and perhaps enhance timely follow-up."

Another concern, Fant said, was the complexity of the written materials. While the AAP recommendations suggest that a sixth-grade reading level would be appropriate, the average reading level for these materials was 10th grade, the study found.

The recommendations from the AAP task force were that educational materials given to parents should include:

  • The benefits of screening,
  • What, if any, potential risks are involved in screening,
  • How parents are informed of the results,
  • What the possibility of a false-positive is,
  • The importance of responding to a positive test result,
  • How to respond to a positive test result,
  • The screening program's policy for storing sample blood and how stored samples might be used.

"Four million children are born every year, and about 8,000 or fewer will have one of the 29 conditions that the American College of Medical Genetics recommends that newborns be screened for. We can test for all of these conditions off a drop of blood," explained Jennifer Howse, president of the March of Dimes.

"A parent really needs to know that screening is important and why, how it's done, and then they need to know what to do if they get a positive result," Howse said. Knowing what to do if parents receive a positive result is the most crucial factor, because if a baby does have one of these conditions immediate treatment is often necessary before permanent damage or death can result.

According to the March of Dimes, some of the conditions to be tested for include hearing loss; sickle cell anemia; phenylketonuria, an inherited disorder of body chemistry that, if untreated, causes mental retardation; and galactosemia, an inability to process lactose typically found in dairy products.

To evaluate how each state was communicating the screening information to new parents, the researchers requested information from newborn screening programs in every state. Forty-seven states sent the educational materials they hand out to new parents.

The researchers found that none of the states' educational materials contained all seven of the AAP's recommendations. Most of the programs did explain the benefits of screening, and let parents know how they would be informed of the screening results.

Only 19 percent discussed any risks of screening, which while slight, include pain or infection. Just 13 percent of the newborn screening programs explained that false-positive test results are possible.

Slightly more than one-third of the programs explained why it's important to respond to a positive test result, and only 28 percent of the educational materials told parents how to follow-up if they received a positive test result.

Sample storage and potential use were only discussed in materials from five states.

"The area that is most concerning is that only 34 percent of the programs had information on the importance of a parent responding to a positive test result," said Howse. "For many of these conditions, you only have a few weeks to get on it or there can be permanent damage or even death."

Fant also said she thought it would be better to distribute genetic screening material at a prenatal visit, when parents have time to read through and understand the material.

Howse agreed. "The best time to educate parents is during the prenatal period. Most of the responsibility for educating parents falls to hospitals and birthing centers after delivery, and parents are often in a fog at that point."

She also pointed out that if parents are given this information before the baby is born, parents can make sure their state is one that conducts all of the 29 recommended screening tests. If their state is one that doesn't do all of the screenings, they can make arrangements before the birth to have the additional tests done.

Howse said that national guidelines or education materials also would be helpful because right now "each state makes decisions about which test will be used and what material will be distributed -- each state has to reinvent the wheel."

More information

To learn more about newborn screening tests, read this information from the March of Dimes.

SOURCES: Kathryn Fant, M.P.H., researcher, University of Michigan, Ann Arbor; Jennifer Howse, Ph.D., president, March of Dimes, and chairwoman, subcommittee on education and training, U.S. Health and Human Services Secretary's advisory committee on heritable disorders and genetic diseases in newborns and children; May 2005 Pediatrics
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