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Parents receiving heart disease diagnosis for infants need better information
Date:3/14/2014

about eight in 1,000 births in the United States, with approximately one-third of those cases requiring invasive treatment during the first year of life.

Of those surveyed, 13% reported feeling pressured to terminate the pregnancy by their pediatric cardiologist, and 15% felt their physician showed a lack of compassion. More than a fourth of the respondents said they sought a second opinion, and 71% of them chose the second physician for long-term follow-up care. The two most commonly cited stress factors were "uncertainty" about their child's future (87%) and "not knowing about survivors with this defect" (52%).

In the United Kingdom, parents have access to a database of information about the number of procedures and mortality rates among children with congenital heart disease. In the U.S., Dr. Chang said no such database is available to the public so physicians continue to be a vital source of information.

"The information parents receive at diagnosis and the manner in which it is conveyed often determines their assessment of their children's chances for survival and may shape the parents' decisions," said Dr. Chang. "To ensure the parents have the information they need to make these critical decisions about their children's health, physicians should provide context for the parents, including information on success rates at different hospitals, Internet resources and referrals to support networks. Physicians should also be aware of how their demeanor and the words they use will be interpreted by the parents."

Debra Hilton-Kamm of the California Heart Connection, and Mark Sklansky, MD, of the David Geffen School of Medicine at UCLA, co-authored the study. The 82-question survey was distributed to online support groups for parents of children with congenital heart disease. A total of 1,001 responses were received and 160 were excluded because they were incomplete or didn't meet the study's criteria.


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Contact: Laura Mecoy
lmecoy@labiomed.org
310-546-5860
Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center (LA BioMed)
Source:Eurekalert

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