Saidi Arwa S, Paolillo Joseph, Fricker Frederick J, Sears Samuel F, Kovacs Adrienne H
Department of Pediatrics, Division of Pediatric Cardiology, University of Florida, Gainesville, FL 32610-0296, USA.
Congenit Heart Dis. 2007 Jan-Feb;2(1):44-54. doi: 10.1111/j.1747-0803.2007.00071.x.
As a result of significant advances in diagnostic, surgical, interventional, and pharmacological approaches, up to 95% of infants born with a congenital heart defect now survive into adulthood and there are at least 800,000 adult congenital heart disease patients living in the United States. Unfortunately, many of these individuals consider themselves "cured" or "fixed" and might have the misperception of a cure for a variety of reasons. The "cured" label is problematic and congenital heart disease is most accurately considered a chronic condition. This article outlines the concerns associated with the cured label. This is followed by the presentation of 4 illustrating case studies. Members of an adult congenital cardiology healthcare team must be prepared to address the full spectrum of concerns faced by patients who experience unexpected health deterioration. This spectrum includes both biomedical and psychosocial factors.
由于诊断、手术、介入和药理学方法取得了重大进展，目前患有先天性心脏病的婴儿中，高达95%能存活至成年，美国至少有80万成年先天性心脏病患者。不幸的是，这些人中许多认为自己已“治愈”或“修复”，可能因各种原因存在治愈的误解。“治愈”这一标签存在问题，先天性心脏病最准确地应被视为一种慢性病。本文概述了与“治愈”标签相关的问题。随后展示了4个说明性案例研究。成年先天性心脏病医疗团队的成员必须准备好应对经历意外健康恶化的患者所面临的各种问题。这一范围包括生物医学和心理社会因素。
