Nomenclature for Pediatric and Congenital Cardiac Care: Unification of Clinical and Administrative Nomenclature - The 2021 International Paediatric and Congenital Cardiac Code (IPCCC) and the Eleventh Revision of the International Classification of Diseases (ICD-11).

Amy L Juraszek,Andrew C Cook,Jorge M Giroud,James D St Louis,Adrian Crucean,Giovanni Stellin,Stephen P Sanders,Marina Hughes ,Frédérique Bailliard,Hiromi Kurosawa,Jeffrey P Jacobs,Henry L Walters,Otto N Krogmann,Paul M Weinberg ,Diane E Spicer,Vera Demarchi Aiello ,J William Gaynor,Lianyi Wang,Charles W Shepard,Shubhika Srivastava,Kristine J Guleserian,Christo I Tchervenkov,Steven D Colan,Justin T Tretter,Allen D Everett,Lucile Houyel,Jeffrey R Boris,Bohdan Maruszewski ,Lazaro E Hernandez,Marie J Béland,Rodney C G Franklin,Martin J Elliott,Jill J Savla,Rohit S Loomba,Stephen P Seslar,Marshall L Jacobs ,Meryl S Cohen,Leo Lopez,Lindsay S Rogers,Elif Seda Selamet Tierney,Constantine Mavroudis

doi:10.1177/21501351211032919

Abstract

Substantial progress has been made in the standardization of nomenclature for paediatric and congenital cardiac care. In 1936, Maude Abbott published her Atlas of Congenital Cardiac Disease, which was the first formal attempt to classify congenital heart disease. The International Paediatric and Congenital Cardiac Code (IPCCC) is now utilized worldwide and has most recently become the paediatric and congenital cardiac component of the Eleventh Revision of the International Classification of Diseases (ICD-11). The most recent publication of the IPCCC was in 2017. This manuscript provides an updated 2021 version of the IPCCC.The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD), in collaboration with the World Health Organization (WHO), developed the paediatric and congenital cardiac nomenclature that is now within the eleventh version of the International Classification of Diseases (ICD-11). This unification of IPCCC and ICD-11 is the IPCCC ICD-11 Nomenclature and is the first time that the clinical nomenclature for paediatric and congenital cardiac care and the administrative nomenclature for paediatric and congenital cardiac care are harmonized. The resultant congenital cardiac component of ICD-11 was increased from 29 congenital cardiac codes in ICD-9 and 73 congenital cardiac codes in ICD-10 to 318 codes submitted by ISNPCHD through 2018 for incorporation into ICD-11. After these 318 terms were incorporated into ICD-11 in 2018, the WHO ICD-11 team added an additional 49 terms, some of which are acceptable legacy terms from ICD-10, while others provide greater granularity than the ISNPCHD thought was originally acceptable. Thus, the total number of paediatric and congenital cardiac terms in ICD-11 is 367. In this manuscript, we describe and review the terminology, hierarchy, and definitions of the IPCCC ICD-11 Nomenclature. This article, therefore, presents a global system of nomenclature for paediatric and congenital cardiac care that unifies clinical and administrative nomenclature.The members of ISNPCHD realize that the nomenclature published in this manuscript will continue to evolve. The version of the IPCCC that was published in 2017 has evolved and changed, and it is now replaced by this 2021 version. In the future, ISNPCHD will again publish updated versions of IPCCC, as IPCCC continues to evolve.

Highlights

Substantial progress has been made in the standardization of nomenclature for paediatric and congenital cardiac care.[1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108] In 1936, Maude Abbott, of McGill University in Montréal, Québec, Canada, published her Atlas of Congenital Cardiac Disease, which was the first formal attempt to classify congenital heart disease.[1]
The Metropolitan Atlanta Congenital Defect Program of the Birth Defect Branch of the Centers for Disease Control and Prevention of the United States government carried out surveillance of infants and fetuses with cardiac defects delivered to mothers residing in Atlanta during the years 1988 through 2003.65 These records were reviewed and classified using both administrative coding and the clinical nomenclature used in the Society of Thoracic Surgeons Congenital Heart Surgery Database
This study demonstrates differences in case ascertainment between administrative and clinical registry data for children undergoing cardiac operations, which translated into important differences in outcomes assessment

Summary

Introduction

Substantial progress has been made in the standardization of nomenclature for paediatric and congenital cardiac care.[1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108] In 1936, Maude Abbott, of McGill University in Montréal, Québec, Canada, published her Atlas of Congenital Cardiac Disease, which was the first formal attempt to classify congenital heart disease.[1]. The International Paediatric and Congenital Cardiac Code (IPCCC) English IPCCC term currently in ICD-11: Double outlet right ventricle with non-committed ventricular septal defect The Metropolitan Atlanta Congenital Defect Program of the Birth Defect Branch of the Centers for Disease Control and Prevention of the United States government carried out surveillance of infants and fetuses with cardiac defects delivered to mothers residing in Atlanta during the years 1988 through 2003.65 These records were reviewed and classified using both administrative coding and the clinical nomenclature used in the Society of Thoracic Surgeons Congenital Heart Surgery Database.

Results

Conclusion