Dore Annie, de Guise Pierre, Mercier Lise-Andrée
Montreal Heart Institute, Montreal, Quebec.
Can J Cardiol. 2002 Feb;18(2):141-6.
The population of adults with congenital heart disease is growing rapidly, and the transition of care from the pediatric to the adult setting is often not optimal.
To assess the level of knowledge that adults with congenital heart disease have of their condition.
All new patients referred to an adult congenital heart centre were asked to answer questions about their clinical diagnosis, their need and reason for anti-bioprophylaxis, and their risks of pregnancy when applicable. The patient's age at first visit, source of referral and time from last visit in cardiology (defined as the last visit with a cardiologist) were also noted.
From November 1999 to July 2000, 104 patients (42 men) were referred to the adult centre by pediatric cardiologists (56), medical cardiologists (26), general practitioners (11), dentists (two) or obstetricians (two), or they were self-referred (seven). The mean age at the time of referral was 28 11 years (range 16 to 72 years, median 24 years). The time from the last visit in cardiology varied widely from one month to 25 years (median three years), with 29 patients (28%) having had no follow-up for more than five years. Among these, 14 patients had no follow-up for more than 10 years, with six patients having been referred for complications related to their cardiac anatomy, such as heart failure (Eisenmenger, Ebstein), syncope (operated and unoperated tetralogy of Fallot) and arrhythmias (atrial septal defect, unoperated Fallot). The clinical diagnosis was completely unknown by 36 patients (34.6%), including patients with repaired Fallot (three patients), Mustard procedure (two), severe aortic stenosis (two), severe pulmonary stenosis (one), Eisenmenger (one), unoperated Fallot (one), ventricular septal defect (six) and bicuspid aortic valve (seven). Seventy-three patients (79%) knew about antibiotic prophylaxis, but 50% did not comprehend why they needed it. Many women (66%) had never discussed the risks of pregnancy with their physician.
A large percentage of adults with congenital heart abnormalities show a poor level of knowledge about their heart condition. These observations suggest the importance of structured transitional programs, the impact of which will need to be validated in prospective studies.
患有先天性心脏病的成年人口正在迅速增长，而从儿科到成人医疗环境的护理过渡往往并不理想。
评估患有先天性心脏病的成年人对自身病情的了解程度。
所有转诊至成人先天性心脏病中心的新患者都被要求回答有关其临床诊断、抗生素预防的需求和原因以及适用时的妊娠风险等问题。还记录了患者的首次就诊年龄、转诊来源以及距上次心脏病就诊的时间（定义为最后一次与心脏病专家就诊的时间）。
1999年11月至2000年7月，104名患者（42名男性）由儿科心脏病专家（56名）、内科心脏病专家（26名）、全科医生（11名）、牙医（2名）或产科医生（2名）转诊至成人中心，或者是自我转诊（7名）。转诊时的平均年龄为28±11岁（范围16至72岁，中位数24岁）。距上次心脏病就诊的时间差异很大，从1个月到25年不等（中位数3年），29名患者（28%）没有超过五年的随访。其中，14名患者没有超过十年的随访，6名患者因与心脏解剖结构相关的并发症而被转诊，如心力衰竭（艾森曼格综合征、埃布斯坦畸形）、晕厥（法洛四联症手术和未手术患者）和心律失常（房间隔缺损、未手术法洛四联症）。36名患者（34.6%）对临床诊断完全不了解，包括法洛四联症修复术后患者（3名）、马斯塔德手术患者（两名）、严重主动脉瓣狭窄患者（两名）、严重肺动脉瓣狭窄患者（一名）、艾森曼格综合征患者（一名）、未手术法洛四联症患者（一名）、室间隔缺损患者（六名）和二叶式主动脉瓣患者（七名）。73名患者（79%）了解抗生素预防，但50%不理解为什么需要它。许多女性（66%）从未与医生讨论过妊娠风险。
很大比例的患有先天性心脏异常的成年人对自己的心脏状况了解程度较差。这些观察结果表明结构化过渡项目的重要性，其影响需要在前瞻性研究中得到验证。
