Centre for Health Services and Nursing Research, Katholieke Universiteit Leuven, Division of Congenital and Structural Cardiology, University Hospitals of Leuven, Leuven, Belgium.
Curr Opin Pediatr. 2010 Oct;22(5):573-8. doi: 10.1097/MOP.0b013e32833e1429.
To draw attention to the substantial growth of number of centres that provide specialized care for adult congenital heart disease, to what is needed in such a specialized centre and--most importantly--to the big proportion of patients who are lost to follow-up.
For a long time it was assumed that loss of follow-up or lapse of care started at the time of transfer of care from paediatric cardiology to an adult setting. In recent years it became clear, from studies from all over the world, that the loss of follow-up was much larger than assumed and that it started to become substantial after childhood, in the adolescent and teenage years.
The implication of these findings is that--to avoid the very substantial loss to follow-up--a timely transition programme must start, that is before the big loss to follow-up starts, at the beginning of the adolescent years. The current workforce is inadequate to care for the vast number of adult congenital heart disease patients in the community; it will be necessary to establish more adult congenital heart disease programmes, to train more adult congenital heart disease cardiologists, to implement transition programmes and to take nurse specialists on staff.
引起人们对为成人先天性心脏病患者提供专业护理的中心数量大幅增长的关注，关注这样一个专业中心需要什么，以及最重要的是，关注大量失去随访的患者。
长期以来，人们一直认为，失去随访或护理中断始于儿科心脏病学向成人环境转介护理之时。近年来，从世界各地的研究中清楚地表明，失去随访的比例远远超过人们的预期，而且在儿童期之后，在青少年时期就已经开始大量出现。
这些发现的意义在于，为了避免大量的失访，必须及时启动过渡计划，即在大量失访开始之前，在青少年时期开始。目前的劳动力不足以照顾社区中大量的成人先天性心脏病患者；有必要建立更多的成人先天性心脏病项目，培训更多的成人先天性心脏病心脏病专家，实施过渡计划，并配备护士专家。
