Nomenclature for congenital and paediatric cardiac disease: Historical perspectives and The International Pediatric and Congenital Cardiac Code

Abstract

Clinicians working in the field of congenital and paediatric cardiology have long felt the need for a common diagnostic and therapeutic nomenclature and coding system with which to classify patients of all ages with congenital and acquired cardiac disease. A cohesive and comprehensive system of nomenclature, suitable for setting a global standard for multicentric analysis of outcomes and stratification of risk, has only recently emerged, namely, The International Paediatric and Congenital Cardiac Code. This review, will give an historical perspective on the development of systems of nomenclature in general, and specifically with respect to the diagnosis and treatment of patients with paediatric and congenital cardiac disease. Finally, current and future efforts to merge such systems into the paperless environment of the electronic health or patient record on a global scale are briefly explored. On October 6, 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. In January, 2005, the International Nomenclature Committee was constituted in Canada as The International Society for Nomenclature of Paediatric and Congenital Heart Disease. This International Society now has three working groups. The Nomenclature Working Group developed The International Paediatric and Congenital Cardiac Code and will continue to maintain, expand, update, and preserve this International Code. It will also provide ready access to the International Code for the global paediatric and congenital cardiology and cardiac surgery communities, related disciplines, the healthcare industry, and governmental agencies, both electronically and in published form. The Definitions Working Group will write definitions for the terms in the International Paediatric and Congenital Cardiac Code, building on the previously published definitions from the Nomenclature Working Group. The Archiving Working Group, also known as The Congenital Heart Archiving Research Team, will link images and videos to the International Paediatric and Congenital Cardiac Code. The images and videos will be acquired from cardiac morphologic specimens and imaging modalities such as echocardiography, angiography, computerized axial tomography and magnetic resonance imaging, as well as intraoperative images and videos. Efforts are ongoing to expand the usage of The International Paediatric and Congenital Cardiac Code to other areas of global healthcare. Collaborative efforts are underway involving the leadership of The International Nomenclature Committee for Pediatric and Congenital Heart Disease and the representatives of the steering group responsible for the creation of the 11th revision of the International Classification of Diseases, administered by the World Health Organisation. Similar collaborative efforts are underway involving the leadership of The International Nomenclature Committee for Pediatric and Congenital Heart Disease and the International Health Terminology Standards Development Organisation, who are the owners o...

Maternal cardiac and obstetric performance in consecutive pregnancies in women with heart disease

“…Cardiac lesions were classified according to the International Pediatric and Congenital Cardiac Code. 10 Further information was collected on prior surgical repair and re-operation, pre-pregnancy haemodynamic status was assessed by echocardiography, cardiac magnetic resonance and clinical reports, and the NYHA functional class pre-pregnancy was ascertained. 11 Adverse cardiac events were classified as cardiac complications as follows: maternal cardiac death, pulmonary oedema (documented on physical examination or radiography), treated arrhythmia (RT, sustained arrhythmia requiring treatment), venous thrombosis, arterial thrombosis, valve thrombosis, endocarditis, reduced NYHA functional class from baseline, invasive treatment (invasive cardiac intervention during pregnancy or within 6 months of delivery) and arrhythmia not treated (RNT, unsustained arrhythmia not requiring treatment).…”

Tracheostomy After Operations for Congenital Heart Disease: An Analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database

“…Preoperative, operative, and outcomes data are collected on all patients undergoing pediatric and congenital heart surgery at participating centers. Coding for this database is accomplished by clinicians and ancillary support staff using the International Pediatric and Congenital Cardiac Code [8,9] and is entered into the contemporary version of the STS-CHSD data collection form (DCF). [10] The Duke Clinical Research Institute serves as the data warehouse and analytic center for all STS National Databases.…”

Variation in Prenatal Diagnosis of Congenital Heart Disease in Infants

“…It is estimated that the database represents approximately 93% of all United States centers that perform congenital heart surgery and greater than 96% of all operations 17 . Coding within the database is performed by clinicians and ancillary support staff using the International Pediatric and Congenital Cardiac Code 18 and is entered into the STS-CHSD data collection form (version 2.5 or 3.0) 19 . This study was approved by the STS-CHSD Access and Publications Committee and the Duke University Institutional Review Board.…”