Fernandes Susan M, Verstappen Amy, Clair Mathieu, Rummell Mary, Barber Deena, Ackerman Kathleen, Dummer Kirsten, Mares Joseph C, Cannobio Mary M, Reardon Leigh C, Long Jin, Crumb Stephen, Bhatt Ami, Takahashi Masato, Khairy Paul, Williams Roberta, Landzberg Michael J, Moe Tabitha, Pearson Disty
Division of Pediatric Cardiology, Department of Pediatrics, Stanford University, Palo Alto, CA, USA.
Division of Cardiovascular Medicine, Department of Medicine, Stanford University, Palo Alto, CA, USA.
Pediatr Cardiol. 2019 Oct;40(7):1439-1444. doi: 10.1007/s00246-019-02154-8. Epub 2019 Jul 31.
National management guidelines recommend that patients with moderate and complex congenital heart disease (CHD) receive life-long cardiac care (LLCC), guided in adulthood by an adult congenital heart disease (ACHD) specialist. However, the percentage of adult CHD patients who receive such care is quite low. Inadequate knowledge regarding LLCC may contribute to care interruption. We, therefore, sought to determine the knowledge of adolescents and young adults regarding LLCC. In this multi-center study, we administered a survey to patients 13-20 years of age with surgically repaired congenital heart disease. We assessed the understanding of both their need for LLCC and awareness of the type of recommended care providers. A total of 290/302 (96%) patients approached in the outpatient clinic setting (10 centers) agreed to study participation; mean age was 16.3 ± 2.3 years; patients were 62% male. While the need for LLCC was recognized by 78% of subjects, only 37% understood that an ACHD specialist in adulthood should guide this care. Only 37% of respondents stated that their current cardiology team had spoken to them about LLCC, but 90% wished to learn more. A substantial number of adolescents and young adults with moderate and complex CHD lack adequate knowledge about LLCC, but most have a desire to learn more about the type of care they will require in adulthood. Transition education/assessment ensuring successful transfer to adult-oriented care for this population should emphasize the importance of LLCC.
国家管理指南建议，患有中度和复杂性先天性心脏病（CHD）的患者应接受终身心脏护理（LLCC），在成年后由成人先天性心脏病（ACHD）专家指导。然而，接受此类护理的成年CHD患者比例相当低。对终身心脏护理的知识不足可能导致护理中断。因此，我们试图确定青少年和年轻人对终身心脏护理的了解情况。在这项多中心研究中，我们对13至20岁接受过先天性心脏病手术修复的患者进行了一项调查。我们评估了他们对终身心脏护理需求的理解以及对推荐护理提供者类型的认识。在门诊环境（10个中心）中接触的302名患者中有290名（96%）同意参与研究；平均年龄为16.3±2.3岁；患者中62%为男性。虽然78%的受试者认识到需要终身心脏护理，但只有37%的人明白成年后的ACHD专家应指导这种护理。只有37%的受访者表示他们目前的心脏病学团队曾与他们谈论过终身心脏护理，但90%的人希望了解更多。大量患有中度和复杂性CHD的青少年和年轻人对终身心脏护理缺乏足够的了解，但大多数人希望更多地了解他们成年后所需的护理类型。确保该人群成功过渡到以成人为导向的护理的过渡教育/评估应强调终身心脏护理的重要性。
