According to new research published today, sharing the results of genetic testing for cardiomyopathy in 13- to 18-year-olds does not cause emotional harm to families or negatively affect family function or dynamics. Circulation: genomic and precision medicine, a magazine of the American Heart Association.
Genetic testing for cardiomyopathy in symptomatic children can confirm the diagnosis, clarify the prognosis, determine eligibility for disease-specific cardiomyopathy therapies, and even report the risk of others. family members. Genetic testing for asymptomatic adults and children also occurs after one of them family members receives positive results from genetic tests for cardiomyopathy. While genetic testing it can have important medical and social implications for both children and their families, there is limited research on the psychological impact of the genetic outcomes of cardiomyopathy and how test results can affect family function and dynamics.
“As a medical geneticist who cares for children with a personal or family history of cardiomyopathy, understanding how young people are and their pairs process genetic test results and adjust them after genetic testing is of great importance, ”said Wendy K. Chung, MD Ph.D., lead author of the study, head of clinical genetics and professor of pediatrics and Kennedy Family Medicine at Columbia University in New York City. ”Genetic testing for cardiomyopathy can help save lives, but it can also have a significant impact on young people by limiting their sports participation or socializing with peers. and they can increase feelings of vulnerability during the teenage years of training. “
To determine family function and dynamics after children and their families received the results of genetic testing, Chung and colleagues used a 60-question survey distributed to members of the Children’s Cardiomyopathy Foundation and seven northern locations. -Additional Americans on the Pediatric Cardiomyopathy Registry. The survey questions are based on problem solving, communication, roles in the family, affective responsiveness, affective involvement, behavior control, and overall functioning. The questionnaire, known as the McMaster family assessment device, measures a person’s perceptions of their family on a scale of one to four, with a four indicating the worst levels of family function. After completing the genetic tests, parents and children did the survey. In addition, adult participants were surveyed about their feelings about their child’s genetic test results and adolescents about their feelings after receiving their own test results.
A total of 162 participating parents completed the survey; almost 60% of the respondents were women and the average age of the parents at the time of completing the survey was 41.5 years. A total of 48 participating adolescents completed the survey, with an equal number of men and women surveyed, with a mean age of 16.7 years.
The researchers found that:
- 91% of adolescent respondents with and without cardiomyopathy he was glad to know his genetic test results;
- Half of the parents responded that they would prefer to receive the results of the genetic tests before their children received the results. Nearly 41% of parents believe that the child and parents should receive results at the same time; i,
- Almost 71% of adolescents believed that they should receive the results of genetic testing at the same time as their parents, while only 16% believed that their parents should receive the results of genetic testing first.
“With increased use of genetic information in health care, it is important for clinicians to find ways to engage young people in the process so they understand the test results and can make positive changes that can improve their health, “Chung said.” It is understandable that some people experiment negative emotions when they learn they have a genetic risk of serious heart disease; however, their families appear to be performing better than those with negative test results. “
The study is limited by a modest sample size of people who were predominantly non-Hispanic white participants; therefore, the results cannot be generalized to all population groups. There may be significant cultural differences in family dynamics and feelings about the results of genetic testing in other racial and ethnic groups that could not be measured in this study.
In addition, because most participants enrolled in the survey retrospectively, the time elapsed between receiving genetics test the results and conduct of the survey ranged from a few months to a few years; therefore, memory recall may contribute to some adjusted or inaccurate perceptions. Researchers suggest future studies that may prospectively investigate the impact of genetic testing on families to better understand how time affects their experiences.
American Heart Association
Citation: Adolescents who know the results of their genetic tests for cardiomyopathy can improve family function (2021, July 13) recovered on July 13, 2021 at https://medicalxpress.com/news/2021-07-teens- results-cardiomyopathy-genetic-family.html
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