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成人先天性心脏病——医学需求回顾与展望2000年

Grown-up congenital heart disease--medical demands look back, look forward 2000.

作者信息

Somerville J

机构信息

GUCH Unit, Middlesex Hospital, London, UK.

出版信息

Thorac Cardiovasc Surg. 2001 Feb;49(1):21-6. doi: 10.1055/s-2001-9911.

Abstract

A new medical community, the grown-up congenital heart patients--GUCH--has resulted from successes of cardiac surgery over 30-40 years. Many survivors have complicated problems, medical and surgical, demanding experience and expertise neither provided nor organised in most countries. Islands of good care exist with difficulty. The experience of one specialist GUCH unit established for 25 years shows that 55-60% admissions are for complex lesions, particularly after complicated surgery. The patients' overall costs are at least twice those of other cardiac patients. GUCH admissions are about 5-8% of the total, varying according to the population/region served. Supervised medical care for GUCH is equally important in outpatient services, involving 3 times the secretarial time of other cardiac patients, an accessible database and a "helpline" for doctors and patients. This may be life-saving in patients with complex conditions. The GUCH population is ageing, with increasing numbers of complex patients. 30% of admissions now are over 40 years old, and 5% are over 60, confirming that this is an adult medical speciality, not paediatric. Invasive investigations and arrhythmias provide the most frequent reasons for admissions--atrial flutter is the commonest arrhythmia, needing experts when it occurs in Fontan, transposition, etc. Routine coronary arteriography is also important. In cardiac surgery, one in five admissions presents organisational problems. Reoperation, now as many as 9 or 10 times, has to be optimised. Reoperation on left and right outflow tracts-for changing valves and conduits--is more common than first operations. GUCH patients represent a relatively small portion of the whole population. Such patients in a population of 7-8 million need to be concentrated in 1-2 centres, depending on culture, religion, geography, language etc., to provide necessary experience, expertise and education.

摘要

过去30到40年心脏外科手术的成功造就了一个新的医疗群体——成年先天性心脏病患者(GUCH)。许多幸存者存在复杂的医疗和外科问题,而大多数国家既没有提供也没有组织处理这些问题所需的经验和专业知识。优质护理的孤岛艰难存在。一个成立25年的专科GUCH病房的经验表明,55%至60%的入院患者患有复杂病变,尤其是在经历复杂手术后。这些患者的总体费用至少是其他心脏病患者的两倍。GUCH患者的入院人数约占总数的5%至8%,因所服务的人群/地区而异。对GUCH患者的监督医疗护理在门诊服务中同样重要,其秘书工作时间是其他心脏病患者的三倍,需要一个可访问的数据库以及为医生和患者提供的“帮助热线”。这对患有复杂病症的患者可能是救命的。GUCH群体正在老龄化,复杂患者的数量不断增加。现在30%的入院患者年龄超过40岁,5%的患者年龄超过60岁,这证实了这是一个成人医学专科,而非儿科。侵入性检查和心律失常是最常见的入院原因——心房扑动是最常见的心律失常,当它发生在Fontan手术、大动脉转位等情况时需要专家处理。常规冠状动脉造影也很重要。在心脏外科手术中,五分之一的入院患者存在组织管理问题。再次手术,现在多达9或10次,必须加以优化。左右流出道的再次手术——用于更换瓣膜和管道——比初次手术更常见。GUCH患者在整个人口中所占比例相对较小。在700万至800万人口中,这类患者需要根据文化、宗教、地理、语言等因素集中在1至2个中心,以提供必要的经验、专业知识和培训。

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