Teens knowing results of genetic cardiomyopathy tests may be beneficial

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Sharing results of genetic testing for cardiomyopathy with adolescents does not appear to negatively impact family functioning scores, researchers reported.

Wendy K. Chung

“As a medical geneticist caring for children with a personal or family history of cardiomyopathy, it is critical to understand how young people and their parents process and adapt genetic test results after genetic testing,” Wendy K. Chung, MD, PhD, chief of clinical genetics and Kennedy Family Professor of Pediatrics and Medicine at Columbia University, in a press release. “Genetic testing for cardiomyopathy can help save lives, but can also have a major impact on young people by limiting their sports participation or socialization with peers and can increase feelings of vulnerability during formative teen years.”

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The researchers surveyed 48 adolescents (mean age 17 years; 50% male) and 162 parents of minors (mean age 41 years; 60% female) from the Children’s Cardiomyopathy Foundation and seven North American sites in the Pediatric Cardiomyopathy Registry that were offered genetic tests for personal or family history of cardiomyopathy.

Participants were asked about emotions after receiving the results and the impact on parent-child communication. The McMaster Family Assessment Device was used to measure family functionality.

According to the researchers, 91% of adolescents said they were happy with their results; 50% of parents said they wanted results before their child and 40.7% said they wanted to receive them at the same time as their child; and 70.8% of adolescents said they wanted to receive the results at the same time as their parents, while 16.6% said their parents should get the results first.

According to the researchers, parents were more likely to disclose results to their children if the results were positive rather than negative or uncertain (P = .014).

Parents also reported negative emotions more often if their child had a positive outcome than a negative outcome (P < .001).

However, 91% of families with positive outcomes met the criteria for healthy family functionality, compared with 57% of families with negative outcomes (P < .001), Chung and colleagues found.

“With greater use of genetic information in medical care, it is important for clinicians to find ways to involve young people in this process so that they understand their test results and make positive changes that can improve their health,” he said. Chung in the release. “It’s understandable that some people experience negative emotions when they discover that they are at genetic risk for serious heart disease; however, their families seem to function better than those whose test results were negative.”

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