Adolescents with congenital heart defects: a patient and parental perspective of genetic information and genetic risk.

ABSTRACT: Congenital heart defects (CHDs) occur in 8 of 1000 live-born children, making them common birth defects in the adolescent population. CHDs may have single gene, chromosomal, or multifactorial causes. Despite evidence that patients with CHD want information on heritability and genetics, no studies have investigated the interest or knowledge base in the adolescent population. This information is necessary as patients in adolescence take greater ownership of their health care and discuss reproductive risks with their physicians. The objectives of this survey-based study were to determine adolescents' recall of their own heart condition, to assess patient and parent perception of the genetic contribution to the adolescent's CHD, and to obtain information about the preferred method(s) for educa

SUBMITTER: Crawford CA 

PROVIDER: S-EPMC8444052 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature