The European Paediatric Cardiac Code Long List: structure and function — the first revision

Abstract

The Long ListThe Long List is a comprehensive hierarchical system of coding and classification for the diagnosis and treatment of cardiac disease. The list was first published in 2000, as part of the standard coding system recommended by the Association for European Paediatric Cardiology for use across Europe. It embraces the entirety of the diagnosis and therapy of children with congenital and acquired cardiac disease. The Long List, as a whole, was adopted by the Association in 1998. Its development and expansion has been detailed previously. In essence, it grew from a list of 507 purely diagnostic terms published in 1985, through to a 1,777 item, hierarchical 12 tree structure in the Netherlands by 1988, and then to a single hierarchical structure of over 4,300 items in London by 1994. Although originally aimed at the clinician or surgeon treating cardiac disease first appearing in infancy or childhood, during this time it was enlarged to encompass abnormalities first diagnosed in fetal life, as well as cardiac disease first acquired during adult life. The list published in 2000 was composed of 4,777 items. These were made up of 3,906 individual terms, most of whom were mutually exclusive and unambivalent, given the constraints of clinical ambiguities and differing cultures of practice.