IN 1999 AND EARLY 2000, THE ASSOCIATION FOR European Paediatric Cardiology published the European Paediatric Cardiac Code as independent but linked Short and Long Lists, containing 650 and 3876 primary terms respectively. The historical background and rationale for development of this coding system has been previously detailed, but essentially it followed a series of meeting of the coding committee of the Association between 1997–1999, during which a pre-existing Long List was adopted and then used to create the condensed Short List. The system was published as the recommended standard coding system for use across Europe, covering the diagnosis and therapy of children with congenital and acquired cardiac disease. The scope of the lists was to encompass the needs of all those involved with such patients, from the fetal cardiologist through to the specialist in adult congenital heart disease; and from the general paediatric cardiologist and cardiac surgeon, to those specialising in transcatheter interventions, paediatric electrophysiology, and paediatric echocardiographers. In addition, the code was crossmapped to the 9th and 10th revisions of the International Classification of Diseases (“ICD-9” and “ICD-10”) provided by the World Health Organisation in order to facilitate returns to central government, a requirement in most countries. In so doing, it was hoped to address the concerns of many centres that such information submitted by professional coding staff was often inaccurate due to the complex nature of congenital cardiac disease, together with the limited scope and vague terminology of the International listings.

The Long List

The 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.

On 6 October, 2000, A Meeting of representatives from the Association for European Paediatric Cardiology, the Society of Thoracic Surgeons, and the European Association for Cardiothoracic Surgery, took place in Frankfurt, Germany to discuss the publications earlier that year of two separate systems of nomenclature for paediatric and congenital heart disease: the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. It was agreed at this meeting that the Short Lists of both systems should be mapped to each other in a first attempt to gravitate toward a single system for describing cardiac defects and procedures related to the heart. The need for this mapping, the historical background of the two parallel nomenclature systems and the later ratification of the mapping process by the first International Summit on Nomenclature for Congenital Heart Disease on 27 May, 2001, in Toronto, Canada, are discussed in the current issue of Cardiology in the Young.