Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Newborn screening can cause unnecessary parental stress

06.06.2006


Worries linger even after false-positive diagnoses are ruled out



Virtually all babies in the U.S. have their heels pricked soon after birth to get a blood sample for genetic testing. These "heel stick" tests identify rare metabolic disorders before they cause irreversible damage, but as more disorders are added to the screening – many states now test for 30 or more – false-positive results are on the rise. In the June issue of Pediatrics, researchers from Children’s Hospital Boston report that false-positive results cause considerable parental stress, even when the baby proves negative on retesting, and that the stress could be alleviated by better education for parents and pediatricians.

Psychologist Susan Waisbren, PhD and Elizabeth Gurian, MS in Children’s Division of Genetics interviewed 173 families who had received false-positive screening results and a comparison group of 67 families with normal newborn screening results.


Although mothers in the false-positive group were interviewed at least six months after their child’s diagnosis had been ruled out, they reported more worry about their child’s future and rated themselves less healthy than mothers in the comparison group. Fifteen percent said their child needed extra parental care, versus 3 percent of mothers in the comparison group. After adjustment for socioeconomic factors, both mothers and fathers in the false-positive group had higher scores on the standardized Parenting Stress Index (PSI); 11 percent of mothers (versus no mothers in the comparison group) scored in the clinical range, in which treatment might be prescribed.

Waisbren and Gurian also found that false-positive tests affected the parent-child relationship: parents in the false-positive group scored more highly on two subscales of the PSI: a Parent-Child Dysfunctional Interaction scale and a Difficult Child scale. (The first asks parents to rate their agreement with statements like "I expected to have closer and warmer feelings for my child, and this bothers me"; the second has statements such as "My child makes more demands on me than most children.")

Waisbren believes a positive test result can increase expectations of illness even when it is later found to be in error. "We’re not sure why – maybe it feeds into a general nervousness as new parents," she speculates. "But our results also show that parental stress was greater when families didn’t have adequate information and understanding."

Two-thirds of parents with false-positive results did not correctly understand why their child was called back for a repeat test, the study found. Mothers who knew the correct reason had reduced stress. (This was not true for fathers, however.)

Other findings:

Some parents had to wait as long as a month to get the result of the second test, and 26 percent voiced concerns about the length of time before a diagnosis was ruled out.

Half of all parents in the false-positive group said they hadn’t been told, or didn’t remember being told, that the diagnosis had been ruled out.

Of these, 22 percent said they were told they wouldn’t be notified unless a problem was found, and 24 percent were required to ask their pediatrician for the test results. "A few parents didn’t even know they’d had a repeat test," Waisbren says.

Sixty-one percent of parents felt a need for more information about newborn screening and the test result.

The researchers suggest that improved and better-timed education may reduce parental stress related to newborn screening. "There needs to be a specific communication plan for informing parents at every step," Gurian says. "Currently, pediatricians are the primary distributors of this information, but some pediatricians don’t feel knowledgeable enough about these rare metabolic disorders to explain a positive test to a parent. It would be good to begin involving obstetricians and to begin educating parents about newborn screening during the prenatal period."

The study was funded by the Maternal and Child Health Bureau of the U.S. Health Resources and Services Administration and the Ethical, Legal and Social Implications (ELSI) division of the Human Genome Project, National Institutes of Health.

According to the CDC, over 4 million babies born in the U.S. each year undergo screening for biochemical genetic disorders, with severe disorders detected in about 3,000. One recent study suggests that there are at least 12 false-positive results for every true case diagnosed*; another puts the ratio at more than 50:1.**

Jamie Newton | EurekAlert!
Further information:
http://www.childrens.harvard.edu

More articles from Health and Medicine:

nachricht New malaria analysis method reveals disease severity in minutes
14.08.2017 | University of British Columbia

nachricht New type of blood cells work as indicators of autoimmunity
14.08.2017 | Instituto de Medicina Molecular

All articles from Health and Medicine >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Fizzy soda water could be key to clean manufacture of flat wonder material: Graphene

Whether you call it effervescent, fizzy, or sparkling, carbonated water is making a comeback as a beverage. Aside from quenching thirst, researchers at the University of Illinois at Urbana-Champaign have discovered a new use for these "bubbly" concoctions that will have major impact on the manufacturer of the world's thinnest, flattest, and one most useful materials -- graphene.

As graphene's popularity grows as an advanced "wonder" material, the speed and quality at which it can be manufactured will be paramount. With that in mind,...

Im Focus: Exotic quantum states made from light: Physicists create optical “wells” for a super-photon

Physicists at the University of Bonn have managed to create optical hollows and more complex patterns into which the light of a Bose-Einstein condensate flows. The creation of such highly low-loss structures for light is a prerequisite for complex light circuits, such as for quantum information processing for a new generation of computers. The researchers are now presenting their results in the journal Nature Photonics.

Light particles (photons) occur as tiny, indivisible portions. Many thousands of these light portions can be merged to form a single super-photon if they are...

Im Focus: Circular RNA linked to brain function

For the first time, scientists have shown that circular RNA is linked to brain function. When a RNA molecule called Cdr1as was deleted from the genome of mice, the animals had problems filtering out unnecessary information – like patients suffering from neuropsychiatric disorders.

While hundreds of circular RNAs (circRNAs) are abundant in mammalian brains, one big question has remained unanswered: What are they actually good for? In the...

Im Focus: RAVAN CubeSat measures Earth's outgoing energy

An experimental small satellite has successfully collected and delivered data on a key measurement for predicting changes in Earth's climate.

The Radiometer Assessment using Vertically Aligned Nanotubes (RAVAN) CubeSat was launched into low-Earth orbit on Nov. 11, 2016, in order to test new...

Im Focus: Scientists shine new light on the “other high temperature superconductor”

A study led by scientists of the Max Planck Institute for the Structure and Dynamics of Matter (MPSD) at the Center for Free-Electron Laser Science in Hamburg presents evidence of the coexistence of superconductivity and “charge-density-waves” in compounds of the poorly-studied family of bismuthates. This observation opens up new perspectives for a deeper understanding of the phenomenon of high-temperature superconductivity, a topic which is at the core of condensed matter research since more than 30 years. The paper by Nicoletti et al has been published in the PNAS.

Since the beginning of the 20th century, superconductivity had been observed in some metals at temperatures only a few degrees above the absolute zero (minus...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Call for Papers – ICNFT 2018, 5th International Conference on New Forming Technology

16.08.2017 | Event News

Sustainability is the business model of tomorrow

04.08.2017 | Event News

Clash of Realities 2017: Registration now open. International Conference at TH Köln

26.07.2017 | Event News

 
Latest News

A Map of the Cell’s Power Station

18.08.2017 | Life Sciences

Engineering team images tiny quasicrystals as they form

18.08.2017 | Physics and Astronomy

Researchers printed graphene-like materials with inkjet

18.08.2017 | Materials Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>