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Advances in medical care and technology over the past several decades have brought an unprecedented ability to expand the quality and length of patients' lives. Once debilitating and lethal diseases are now frequently treatable and at times curable. Evidence of this progress can be found uniquely in the field of paediatric cardiology. Only decades ago, complex congenital heart malformations such as hypoplastic left heart syndrome were uniformly lethal diagnoses with no option for surgical intervention or medical management.1 ,2
Newer and more sophisticated treatment options come with expanding use and dependence on increasingly costly medical and surgical interventions.3 Use of these interventions has placed an increasing strain on medical systems often already under significant pressure. The adoption of evidence-based medicine has led to a significant effort to understand how our interventions drive patient outcomes such as survival, quality and cost burden. While some interventions may lead to a combination of reduced cost and improved patient quality of life, others are associated with significantly increased cost and may not significantly improve quality or duration of life.1 ,3 ,4 The availability of more advanced interventions has shifted our thought process from ‘can we do something?’ to ‘can AND should we do something?’. The latter question is difficult and not always palatable, particularly to physicians whose primary goal is to improve the quality and duration of patients' lives.
In the context of the medical system as a whole, patients with congenital heart disease (CHD) represent a small but particularly costly subset of the population. Prior studies have documented a disproportionately …