Teens knowing results of genetic cardiomyopathy tests may be beneficial
Click Here to Manage Email Alerts
Sharing results of genetic tests for cardiomyopathy with adolescents does not appear to negatively impact family functioning scores, researchers reported.
“As a medical geneticist caring for children with a personal or family history of cardiomyopathy, understanding how young people and their parents process the genetic test results and adjust after genetic testing are critically important,” Wendy K. Chung, MD, PhD, chief of clinical genetics and Kennedy Family Professor of Pediatrics and Medicine at Columbia University, said in a press release. “Genetic testing for cardiomyopathy could help to save lives, yet also has the potential to have a major impact on young people by limiting their sports participation or socialization with peers and may increase feelings of vulnerability during formative teenage years.”
The researchers surveyed 48 adolescents (mean age, 17 years; 50% male) and 162 parents of minors (mean age, 41 years; 60% women) from the Children’s Cardiomyopathy Foundation and seven North American sites in the Pediatric Cardiomyopathy Registry who were offered genetic testing for personal or family history of cardiomyopathy.
Participants were asked about emotions after receiving 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 to know their results; 50% of parents said they wanted to get 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 results at the same time as their parents, whereas 16.6% said their parents should get the results first.
Parents were more likely to disclose results to their children if the results were positive as opposed to negative or uncertain (P = .014), according to the researchers.
Parents were also more likely to report negative emotions if their child had a positive result as opposed to a negative one (P < .001).
However, 91% of families with positive results met criteria for healthy family functionality compared with 57% of families with negative results (P < .001), Chung and colleagues found.
“With greater use of genetic information in medical care, it is important for clinicians to find ways to engage young people in this process so that they understand their test results and they can make positive changes that can improve their health,” Chung said in the release. “Understandably, some individuals experience negative emotions when they find out they have a genetic risk for a serious heart condition; however, their families appear to function better than those whose test results were negative.”
Collapse
Read more about
Click Here to Manage Email Alerts