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 education. The results show that adolescent patients had good recall of their type of CHD. Less than half of adolescents and parents believed their CHD had a genetic basis or was heritable; however, adolescents with a positive family history of CHD were more likely to believe that their condition was genetic (p = 0.0005). The majority of patients were interested in receiving additional genetics education and preferred education in-person and in consultation with both parents and a physician. The adolescents who felt most competent to have discussions with their doctors regarding potential causes of their heart defect previously had a school science course which covered topics in genetics. These results provide insight into adolescents' perceptions and understanding about their CHD and genetic risk and may inform the creation and provision of additional genetic education.

译文

:先天性心脏缺陷(CHD)发生在1000个活产儿中的8个中,使其成为青少年人群中常见的先天性缺陷。 CHD可能具有单一基因,染色体或多因素原因。尽管有证据表明冠心病患者希望获得遗传性和遗传学方面的信息,但尚无研究调查青少年人群的兴趣或知识库。由于青春期患者对医疗保健拥有更大的所有权并与医生讨论生殖风险,因此此信息是必要的。这项基于调查的研究的目的是确定青少年对自身心脏病的回忆,评估患者和父母对遗传因素对青少年冠心病的认知,并获得有关首选教育方法的信息。结果表明,青春期患者对CHD类型的记忆良好。不到一半的青少年和父母认为他们的冠心病具有遗传基础或可遗传。然而,患有冠心病家族史的青少年更有可能认为他们的病情是遗传性的(p = 0.0005)。大多数患者有兴趣接受额外的遗传学教育和当面首选的教育,并与父母和医师会诊。那些最有能力与他们的医生就其心脏缺陷的潜在原因进行讨论的青少年,以前曾参加过学校科学课程,内容涉及遗传学主题。这些结果提供了对青少年对冠心病和遗传风险的看法和理解的洞察力,并可能为创建和提供额外的遗传教育提供信息。

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