Rare diagnoses and allocation of precious resources

Constantine D. Mavroudis, Catherine W. Lancaster, Constantine Mavroudis

Research output: Chapter in Book/Report/Conference proceedingChapter


The treatment of rare and expensive medical conditions confounds care delivery and is one of the defining qualities of pediatric cardiology and congenital heart surgery. Increasing concerns over healthcare resource allocation are challenging the merits of treating more expensive forms of congenital heart disease, and this trend will almost certainly continue. In this chapter, the problems of resource allocation for rare and expensive medical conditions are described from philosophical and economic perspectives. The argument is made that current economic models are limited in the ability to assess the value of treating expensive and rare forms of congenital heart disease. Further, multi-disciplinary approaches are necessary to best determine the merits of treating a patient population such as those with significant congenital heart disease that sometimes requires enormous healthcare resources.

Original languageEnglish (US)
Title of host publicationBioethical Controversies in Pediatric Cardiology and Cardiac Surgery
PublisherSpringer International Publishing
Number of pages9
ISBN (Electronic)9783030356606
ISBN (Print)9783030356590
StatePublished - Jan 1 2020


  • Congenital heart disease
  • Medical economics
  • Orphan diseases
  • Rare diseases
  • Resource allocation
  • Utility

ASJC Scopus subject areas

  • General Medicine
  • General Arts and Humanities


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