Are Parents of Children with Congenital Heart Disease Provided Proper Information by Doctors? Study

A recent survey of parents of children with congenital heart disease shows that physicians need to work on communication with families when it comes to diagnosing a patient. In fact, the study found that some physicians did not properly show compassion to help ensure patients of all available options.

For the study, researchers from Los Angeles Biomedical Research Institute (LA BioMed) worked with California Heart Connection, a nonprofit organization for parents of children with congenital heart disease, to conduct an online survey of 841 parents of children who were either diagnosed before or shortly after birth with the health issue.

"Parents confronted with a diagnosis of congenital heart disease face very difficult choices - from selecting a treatment to determining whether to continue a pregnancy, if they receive the diagnosis prenatally," said Ruey-Kang Chang, MD, an LA BioMed researcher and the corresponding author of the study, via a press release. "All of these decisions depend on the information they are given at the time of diagnosis and how well they can understand and retain the information at such a difficult time."

Findings showed that for many parents, upon learning of their child's diagnosis, they received little to no information about support groups or success rates of the health issue at various medical facilities, with two-thirds of the patients told that the children's heart conditions was "rare." Yet more than half of them believed that this meant fewer than one in a million infants had the condition.

Thirteen percent of those surveyed said they reported feeling presented to terminate the pregnancy by their pediatric cardiologist, while 15 percent said they felt that their physician showed a lack of compassion. More than a fourth of the respondents said they sought the opinion of a second doctor, with 71 percent of them choosing the second doctor for follow-up care.

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, via the release. "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."

More information regarding the study can be found via the journal, Pediatric Cardiology.