Kantoch M J, Collins-Nakai R L, Medwid S, Ungstad E, Taylor D A
Department of Pediatrics, University of Alberta, Edmonton.
Can J Cardiol. 1997 Jul;13(7):641-5.
To assess patient knowledge about their congenital cardiovascular disease.
Fifty consecutive patients (25 women) attending the Adult Congenital Heart Disease Clinic, University of Alberta, Edmonton, Alberta, filled out a questionnaire that tested knowledge about their heart defect and endocarditis prophylaxis. The patients ranged in age from 18 to 60 years (mean 25). The most frequent cardiovascular anomalies were obstruction of the left ventricular outflow tract (13), coarctation of the aorta (10), tetralogy of Fallot (six), transposition of the great arteries (five) and Marfan syndrome (four). Patients had been seen on average by three cardiologists (range one to six) and had made an average of seven clinic visits (range one to 22) since the age of 17 years. Eight patients had been followed at other clinics in the past.
Fifty-four per cent of patients knew their diagnosis. Forty-four per cent could explain the defect in lay language, and another 48% made an attempt. When given a heart diagram, 26% marked their defect correctly and 28% made an attempt. Terms 'endocarditis' and 'antibiotic prophylaxis' were known to 16% and 22% of patients, respectively. Fifty-eight per cent could name at least one situation that carries a risk of 'infection in the heart'.
Adults with congenital heart disease have poor knowledge of their heart defects and the importance of endocarditis and antibiotic prophylaxis. Although time consuming, patient education should be a part of every clinic visit. Repetitive and structured patient education may improve patients' knowledge and, hence, participation in their health care.
评估患者对自身先天性心血管疾病的了解程度。
连续50例患者（25名女性）前往加拿大阿尔伯塔省埃德蒙顿市阿尔伯塔大学成人先天性心脏病诊所就诊，他们填写了一份问卷，该问卷测试了他们对心脏缺陷和心内膜炎预防的了解情况。患者年龄在18至60岁之间（平均25岁）。最常见的心血管异常为左心室流出道梗阻（13例）、主动脉缩窄（10例）、法洛四联症（6例）、大动脉转位（5例）和马凡综合征（4例）。自17岁以来，患者平均看过3位心脏病专家（范围为1至6位），平均就诊7次（范围为1至22次）。8例患者过去曾在其他诊所接受随访。
54%的患者知道自己的诊断。44%的患者能用通俗易懂的语言解释缺陷，另有48%的患者尝试进行了解释。在给出心脏图时，26%的患者正确标记了自己的缺陷，28%的患者尝试进行了标记。分别有16%和22%的患者知道“心内膜炎”和“抗生素预防”这两个术语。58%的患者能说出至少一种有“心脏感染”风险的情况。
患有先天性心脏病的成年人对自己的心脏缺陷以及心内膜炎和抗生素预防的重要性了解不足。尽管耗时，但患者教育应成为每次门诊就诊的一部分。重复且结构化的患者教育可能会提高患者的知识水平，从而增强他们对自身医疗保健的参与度。
