Webb Gary
Cincinnati Children's Hospital Heart Institute, Cincinnati, Ohio 45229, USA.
Congenit Heart Dis. 2010 May-Jun;5(3):198-205. doi: 10.1111/j.1747-0803.2010.00409.x.
The care of adult patients with congenital heart defects in the United States is spotty at best, and needs to improve greatly if the needs of these patients are to be met. The care of American children with congenital heart defects is generally excellent. Pediatric cardiac services are well established and well supported. The care of adults with congenital heart disease (CHD) is well established in only a few American centers. While there are an increasing number of clinics, they are generally poorly resourced with relatively few patients. If located in adult cardiology programs, they are usually minor players. If located in pediatric cardiac programs, they are usually minor players as well. Training programs for adult CHD (ACHD) caregivers are few, informal, and poorly funded. To improve the situation, we need perhaps 25 well-resourced and well-established regional ACHD centers in the United States. We need to stop the loss to care of CHD patients at risk of poor outcomes. We need to educate patients and families about the need for lifelong and skilled surveillance and care. We need to effect an orderly transfer from pediatric to adult care. We need to strengthen the human resource infrastructure of ACHD care through the training and hiring of healthcare professionals of a quality equivalent to those working in the pediatric care environment. We need to demonstrate that adult care is high quality care. We need more high-quality ACHD research. The ACHD community needs to establish its credibility with pediatric cardiac providers, adult cardiology groups, with governments, with professional organizations, and with research funding agencies. Accordingly, there is a need for strong political action on behalf of American ACHD patients. This must be led by patients and families. These efforts should be supported by pediatric cardiologists and children's hospitals, as well as by national professional organizations, governments, and health insurance companies. The goal of this political action should be to see that ACHD patients can receive high-quality lifelong surveillance, that we lose fewer patients to care, and that the staff and other services needed are available nationwide.
在美国，对成年先天性心脏病患者的护理充其量只能说是参差不齐，若要满足这些患者的需求，还需大幅改善。美国儿童先天性心脏病的护理总体上非常出色。儿科心脏服务体系完善且得到了充分支持。美国只有少数几个中心为成年先天性心脏病（CHD）患者提供完善的护理。虽然诊所数量在不断增加，但它们的资源普遍匮乏，患者相对较少。如果设在成人心脏病项目中，它们通常处于次要地位。如果设在儿科心脏项目中，通常也处于次要地位。针对成年CHD（ACHD）护理人员的培训项目很少，缺乏规范性，且资金不足。为改善这种状况，美国或许需要25个资源充足、体系完善的区域性ACHD中心。我们需要避免那些可能出现不良预后的CHD患者得不到护理。我们需要教育患者及其家属了解终身接受专业监测和护理的必要性。我们需要实现从儿科护理到成人护理的有序过渡。我们需要通过培训和聘用与儿科护理环境中工作的人员质量相当的医疗专业人员，来加强ACHD护理的人力资源基础设施。我们需要证明成人护理是高质量的护理。我们需要更多高质量的ACHD研究。ACHD群体需要在儿科心脏医疗服务提供者、成人心脏病学团体、政府、专业组织以及研究资助机构中树立起自身的可信度。因此，有必要代表美国ACHD患者采取强有力的政治行动。这必须由患者及其家属来引领。这些努力应得到儿科心脏病专家、儿童医院以及国家专业组织、政府和医疗保险公司的支持。此次政治行动的目标应该是确保ACHD患者能够接受高质量的终身监测，减少得不到护理的患者数量，并确保全国范围内有所需的工作人员和其他服务。
