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Nomenclature for Pediatric and Congenital Cardiac Care: Unification of Clinical and Administrative Nomenclature

Jeffrey P. Jacobs, MD, FACS, FACC, FCCP, Rodney C. G. Franklin, MD, Marie J. Béland, MD, Steven D. Colan, MD, Frédérique Bailliard, MD, Lucile Houyel, MD, James D. St. Louis, MD, Leo Lopez, MD, Vera D. Aiello, MD, PhD, J. William Gaynor, MD, Kristine J. Guleserian, MD, Hiromi Kurosawa, MD, Marina L. Hughes, DPhil, FRACP, Otto N. Krogmann, MD, Bohdan J. Maruszewski, MD, PhD, Giovanni Stellin, MD, Henry L. Walters III, MD, Martin J. Elliott, MD, Christo I. Tchervenkov, MD

“What’s in a name? That which we call a rose,

By any other name would smell as sweet.”

- Act II, Scene II, Romeo and Juliet, William Shakespeare

Abstract

Substantial progress has been made in the standardization of nomenclature for pediatric 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. This chapter will review progress that has been made in the domains of nomenclature and classification for pediatric and congenital cardiac care since that time, and will summarize The International Paediatric and Congenital Cardiac Code (IPCCC), which is the pediatric and congenital cardiac component of the Eleventh Iteration of the International Classification of Diseases (ICD-11).

The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD), in collaboration with the World Health Organization (WHO), developed the pediatric 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 pediatric and congenital cardiac care and the administrative nomenclature for pediatric 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 and some of which provide greater granularity than the ISNPCHD thought was originally acceptable. Thus, the total number of pediatric and congenital cardiac terms in ICD-11 is 367. This chapter describes and reviews the terminology, hierarchy, and definitions of the IPCCC ICD-11 Nomenclature. This chapter therefore also reviews the evolution of systems of nomenclature and classification for pediatric and congenital cardiac care and presents a global system of nomenclature for pediatric and congenital cardiac care that unifies clinical and administrative nomenclature.

Introduction

We name things to help communication, to know that we are talking about the same thing, and to describe the same lesion. In medicine and surgery, we also name things to develop, organize, define, and illustrate terms, in order to communicate precisely and to facilitate the sharing, analysis and comparison of clinical data. In the past, naming conventions for pediatric and congenital cardiac care were complex, and different not only linguistically but also because nomenclatures evolved via different conceptual routes. Now that data can be exchanged so freely electronically, unhindered by geography, the potential benefit of a unitary nomenclature for congenital heart disease becomes obvious. Small cohorts of rare patients in one location can become large cohorts if combined globally. Follow up of these larger cohorts will aid decision making and support health economic analysis. A standardized, unitary, computer friendly, and easily accessible means of describing underlying anomalies is therefore critical. Here we outline how that has been achieved.

Substantial progress has been made in the standardization of nomenclature for pediatric 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],[109],[110] In 1936, Maude Abbott published her Atlas of Congenital Cardiac Disease, which was the first formal attempt to classify congenital heart disease.[1] This chapter will review progress that has been made in the domains of nomenclature and classification for pediatric and congenital cardiac care since that time, and will summarize The International Paediatric and Congenital Cardiac Code (IPCCC), which is the pediatric and congenital cardiac component of the Eleventh Iteration of the International Classification of Diseases (ICD-11).[105],[106],[109],[110]

Congenital cardiac malformations are the most common types of birth defects. Congenital heart disease (CHD) is present in approximately 10 out of every 1000 live births in the United States of America.[111] Before the introduction of current diagnostic modalities (including echocardiography), the estimated incidence of CHD ranged from five to eight per 1000 live births. With improved diagnostic modalities, many more patients with milder forms of CHD can now be identified, so that contemporary estimates of the prevalence of congenital cardiac disease range from eight to twelve per 1000 live births.[112],[113],[114] About 25% of neonates and infants with a congenital cardiac defect undergo surgery or catheter-directed intervention in their first year of life.[111] Survival after surgery for congenital heart defects has increased over the past decade, especially for the most complex operations.[115] The etiology of this improvement is obviously multifactorial, but the ability to compare and benchmark risk-stratified and risk-adjusted outcomes at individual programs to national and international aggregate benchmarks certainly facilitated these improved cardiac surgical outcomes over time. This benchmarking and improvement in quality requires standardization of the nomenclature and classification of pediatric and congenital cardiac disease, as described in this chapter.

This chapter will present The International Paediatric and Congenital Cardiac Code (IPCCC), which is the pediatric and congenital cardiac component of the Eleventh Iteration of the International Classification of Diseases (ICD-11), and will discuss nomenclature for pediatric and congenital cardiac care, using the following organizational scheme and discussing the following topics:

  1. Abstract
  2. Introduction
  3. The International Paediatric and Congenital Cardiac Code (IPCCC)
  4. The Eleventh Iteration of the International Classification of Diseases (ICD-11)
  5. Clinical Nomenclature versus Administrative Nomenclature
  6. Additional Principles of Nomenclature and Classification (Crossmapping Issues and the Development of Crossmapping Rules)
  7. Summary
  8. Tables of IPCCC ICD-11 Nomenclature for Congenital Cardiac Diagnostic Terms in ICD-11 Foundation
    1. Table 1. IPCCC ICD-11 Diagnostic Hierarchy
    2. Table 2. IPCCC ICD-11 Definitions
    3. Table 3. IPCCC ICD-11 Codes
  9. Acknowledgements
  10. References

The International Paediatric and Congenital Cardiac Code (IPCCC)

As mentioned above, the development of classification schemes specific to the congenitally malformed heart began with Maude Abbott’s pioneering work in the early 1900s.[1],[105] Her landmark publication in 1936 entitled “Atlas of Congenital Cardiac Disease” was the first formal attempt to classify the lesions seen in the congenitally malformed heart.[1],[105] However, it was not until the 1990s that efforts were made to create a truly international system of nomenclature and classification to support pediatric and congenital cardiac care. Prior to these efforts of the 1990s, multiple systems of nomenclature and classification were used at hospitals across the world and were the basis of internal, national, and even international registries and databases of pediatric and congenital cardiac care.[105],[109],[110]

Aided by advances in information technology that facilitate the exchange of information, two independent international collaborations began in the 1990s and resulted in the publication of two separate international pediatric and congenital cardiac systems of nomenclature and classification:

  • The European Paediatric Cardiac Code (EPCC) of The Association for European Paediatric and Congenital Cardiology (AEPC)[2],[3]
  • The nomenclature system of the International Congenital Heart Surgery Nomenclature and Database Project of The Society of Thoracic Surgeons (STS) in North America, The European Association for Cardio-Thoracic Surgery (EACTS), and The European Congenital Heart Defects Database of The European Congenital Heart Surgeons Foundation (ECHSF) – (renamed The European Congenital Heart Surgeons Association [ECHSA] in 2003).[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]

During the 1990s, both ECHSF and STS created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, EACTS, ECHSA, and STS collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. As a result of this project, by 2000, a common nomenclature, along with a common core minimal dataset, were adopted by EACTS, ECHSA, and STS, and published in The Annals of Thoracic Surgery as a 372 page free standing Supplement.[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] In parallel, in 1996, the AEPC created a Coding Committee to produce a set of diagnostic and procedural codes that would be acceptable and adopted within both the European pediatric cardiology and European pediatric cardiac surgical communities. As a result of this project, in 2000, the EPCC was published in Cardiology in the Young as a 146 page free standing Supplement.[2],[3]

Both the EPCC and the International Congenital Heart Surgery Nomenclature and Database Project included a comprehensive Long List, with thousands of terms, and a Short List designed to be used as part of a minimum data set for multi-institutional registries and databases. Both Long Lists mapped fully to their respective Short Lists. The nearly simultaneous publication of these two complementary systems of nomenclature led to the problematic situation of having two systems of nomenclature that were to be widely adopted, with the potential risk of duplicate or inaccurate coding within institutions as well as the potential problem of invalidating multicentric projects owing to confusion between the two systems.[105]

Therefore, on Friday, October 6, 2000, in Frankfurt, Germany, during the meeting of ECHSF prior to the 14th Annual Meeting of EACTS, representatives of the involved Societies met and established The International Nomenclature Committee for Paediatric and Congenital Heart Disease, which was to include representatives of the four societies (AEPC, STS, ECHSF, and EACTS), as well as representatives from the remaining continents of the world – Africa, Asia, Australia (Oceania), and South America.[41],[42],[43],[44],[45],[47],[105] Over four years later, in January, 2005, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was constituted and legally incorporated as The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD).

At the meeting in Frankfurt in 2000, an agreement was reached to collaborate and produce a reconciliatory bidirectional map between the two systems of nomenclature. The feasibility of this project was established by the creation of a rule-based bidirectional crossmap between the two Short Lists. This bidirectional crossmap between the two Short Lists was created and published by The International Working Group for Mapping and Coding of Nomenclatures for Pediatric and Congenital Heart Disease (also known for short as the Nomenclature Working Group [NWG]), the original committee and working component of The International Nomenclature Committee for Paediatric and Congenital Heart Disease and the subsequent ISNPCHD[44],[45],[47]

Over the next 8 years, the NWG met 10 times, over a combined period of 47 days, to achieve the main goal of mapping the two comprehensive Long Lists to each other to create the IPCCC, which has two dominant versions[105]:

  • The version of the IPCCC derived from the European Paediatric Cardiac Code of AEPC
  • The version of the IPCCC derived from the International Congenital Heart Surgery Nomenclature and Database Project of EACTS, ECHSA, and STS.

These two versions of the IPCCC are crossmapped to each other[63] and are also often referred to with the following abbreviated short names:

  • EACTS-STS derived version of the IPCCC
  • AEPC derived version of the IPCCC

The NWG therefore crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of EACTS, ECHSA, and STS with the EPCC of AEPC, and thus created the IPCCC[63], which is available for free download from the internet at [https://www.IPCCC.net ].

This common nomenclature, the IPCCC, and the common minimum database data set created and published by The International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by multiple databases and registries of pediatric and congenital cardiac care across the world. In fact, most international databases of patients with pediatric and congenital cardiac disease use the IPCCC as their foundation. The two versions of the IPCCC are used in the overwhelming majority of multi-institutional databases of pediatric and congenital cardiac care throughout the world. The following databases all use the EACTS-STS derived version of the IPCCC:

  • The Society of Thoracic Surgeons Congenital Heart Surgery Database (STS CHSD)[39],[40],[46],
  • The European Congenital Heart Surgeons Association Congenital Heart Surgery Database (ECHSA CHSD)[39],[40],[46],
  • The Japan Congenital Cardiovascular Surgery Database (JCCVSD)[39],[40],[46], and
  • The World Database for Pediatric and Congenital Heart Surgery (WDPCHS).[116]

For all terms within the two versions of the IPCCC, a unique six-digit code corresponds to a single entity, whether it be a morphological phenotype, procedure, symptom, or genetic syndrome, with the mapped terms in each of the two versions being synonymous to each other.[105] By 2013, there were 12,168 items in the IPCCC Long List version derived from the European Paediatric Cardiac Code, and 17,176 in the IPCCC Long List version derived from the International Congenital Heart Surgery and Nomenclature Database Project. These Long Lists include hundreds of qualifiers, some specific (such as anatomical sites), and some generic (such as gradings of severity).

It is primarily the Short Lists, rather than the Long Lists, of the two crossmapped versions of the IPCCC that have been used for analyses of multi-institutional and international outcomes following operations and procedures for patients with congenitally malformed hearts, with over a million patients coded with the IPCCC in registries worldwide.[105] Both versions of the IPCCC Short Lists have been used to develop empirical systems for the adjustment of risk following surgical procedures, based on the operation type and comorbidities, for quality assurance and quality improvement purposes.[117],[118],[119],[120],[121] Both risk adjustment systems depend upon the IPCCC for all variables, to ensure a common nomenclature between institutions submitting data, and both perform better than the systems based on the subjective assessment of risk.[105]

The history of ISNPCHD and the development of IPCCC have been previously published.[44],[45],[47],[105],[107],[108] The initial 12 members of The Initial membership of the International Working Group for Mapping and Coding of Nomenclature for Paediatric and Congenital Heart Disease (also known as the Nomenclature Working Group or NWG), which was the first committee of The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD), represented multiple subspecialties and continents:

  • Vera Aiello, University of Sáo Paulo Medical School, Sáo Paulo, Brazil
  • Marie J. Béland, The Montreal Children’s Hospital, Montreal, Canada
  • Steven Colan, Boston Children’s Hospital, Boston, Massachusetts, United States of America
  • Rodney C. G. Franklin, Royal Brompton & Harefield Hospital NHS Foundation Trust, London, United Kingdom
  • J William Gaynor, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
  • Jeffrey P. Jacobs, University of Florida, Gainesville, Florida, United States of America
  • Otto Krogmann, Heart Center Duisburg, Duisburg, Germany
  • Hiromi Kurosawa, Tokyo Women’s Medical University, Tokyo, Japan
  • Bohdan J. Maruszewski, Children’s Memorial Health Institute, Warsaw, Poland
  • Giovanni Stellin, Universita di Padova, Italy
  • Christo I. Tchervenkov, The Montreal Children’s Hospital, Montreal, Canada
  • Paul Weinberg, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America

The Presidents of The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD) are listed below, along with the terms of their Presidency:

  • Martin J. Elliott (2000–2009)
  • Christo I. Tchervenkov (2009–2013)
  • Rodney C. G. Franklin (2013–2017)
  • Jeffrey P. Jacobs (2017–2021)
  • Steven D. Colan (2021–2025)
  • Lucile Houyel (2025–2029)
  • Leo Lopez (2029–2034)

ISNPCHD has published multiple review articles[52],[54],[55],[57],[106] which provide a unified and comprehensive classification, with definitions, for several simple and complex congenital cardiac malformations, including the following lesions: the functionally univentricular heart[52], hypoplastic left heart syndrome[54], discordant atrioventricular connections[55], cardiac structures in the setting of heterotaxy[57], and ventricular septal defect.[106] These review articles include definitions and a complete listing of the relevant codes and terms in both versions of the IPCCC. The six definitions shown below are the current IPCCC and ICD-11 definitions of several of the terms defined in these review articles[52],[54],[55],[57],[105],[106]; these definitions exemplify the approach utilized by ISNPCHD in the creation of IPCCC:

  • Functionally univentricular heart is defined as a spectrum of congenital cardiac malformations in which the ventricular mass may not readily lend itself to partitioning that commits one ventricular pump to the systemic circulation, and another to the pulmonary circulation.
  • Hypoplastic left heart syndrome is defined as a spectrum of congenital cardiovascular malformations with normally aligned great arteries without a common atrioventricular junction, characterized by underdevelopment of the left heart with significant hypoplasia of the left ventricle including atresia, stenosis, or hypoplasia of the aortic or mitral valve, or both valves, and hypoplasia of the ascending aorta and aortic arch.
  • Congenitally corrected transposition of great arteries is synonymous with the term “discordant atrioventricular & ventriculo-arterial connections” and is defined as a congenital cardiovascular malformation in which the morphologically right atrium connects to the morphologically left ventricle, the morphologically left atrium connects to the morphologically right ventricle, the morphologically right ventricle connects to the aorta, and the morphologically left ventricle connects to the pulmonary trunk.
  • Visceral heterotaxy is defined as a congenital malformation in which the internal thoraco-abdominal organs demonstrate abnormal arrangement across the left-right axis of the body. By convention, heterotaxy syndrome does not include patients with complete mirror-imaged arrangement of the internal organs along the left-right axis also known as “situs inversus totalis”.
  • Ventricular septal defect is defined as a congenital cardiac malformation in which there is a hole or pathway between the ventricular chambers.
  • Perimembranous central ventricular septal defect is defined as a congenital cardiovascular malformation in which there is a ventricular septal defect that 1) occupies the space that is usually closed by the interventricular part of the membranous septum, 2) is adjacent to the area of fibrous continuity between the leaflets of an atrioventricular valve and an arterial valve, 3) is adjacent to an area of mitral-tricuspid fibrous continuity, and 4) is located at the center of the base of the ventricular mass.

Although both the Short Lists and the comprehensive Long Lists of each version of IPCCC have been crossmapped, the two Short Lists emanating from their respective Long-List versions are not the same in terms of structure or content.[105]ISNPCHD recognized this disparity, and believed that the creation of a congenital cardiac subset within ICD-11 would accomplish several goals:

  • help resolve the differences between the Short List of the EACTS-STS derived version of the IPCCC and the Short List of the AEPC derived version of the IPCCC
  • present a single common comprehensive and hierarchical Short List of diagnostic terms that could serve all communities involved with pediatric and congenital cardiac care
  • harmonize the administrative nomenclature for pediatric and congenital cardiac care with the clinical nomenclature for pediatric and congenital cardiac care.

ISNPCHD created, organized, and defined the terms of IPCCC in order to standardize nomenclature for pediatric and congenital cardiac care and promote accurate coding, sharing of information, and analysis of data.[41],[42],[43],[44],[45],[47],[105]ISNPCHD believed from the start that the concept of “illustration” of the terms would be very important to advance these goals.[87],[88],[89],[90],[93],[94],[102] Concurrent with its involvement in developing ICD-11, as described in detail below, ISNPCHD began creating the IPCCC ICD-11 Congenital Heart Atlas to illustrate the terms listed in the “Structural developmental anomaly of heart or great vessels” section of ICD-11. In addition to the terms, definitions, and data about coding that is published in ICD-11, the IPCCC ICD-11 Congenital Heart Atlas is currently being built to contain drawings, photographs of anatomical specimens, images and videos from various imaging modalities, and intraoperative photographs and videos, all designed to help health care professionals better select the correct designation for the cardiac phenotypes listed in ICD-11, as well as for educational purposes. The IPCCC ICD-11 Congenital Heart Atlas will be freely accessible on the ISNPCHD website: [https://www.IPCCC.net ].

The Eleventh Iteration of the International Classification of Diseases (ICD-11)

The history of The International Classification of Diseases (ICD) dates back to the late 1800s (Figure 1 and Figure 2):

  • In 1891, the International Statistical Institute commissioned a committee chaired by Jacques Bertillon (1851–1922), Chief of Statistical Services of the City of Paris, to create what became the Bertillon [International] Classification of Causes of Death, with associated sequential numeric codes.[105] Over the following decades, this classification scheme was adopted by many countries in the Americas and Europe, with conferences for revision occurring roughly every 10 years to update the system, which became known as The International Classification of Diseases (ICD).
  • In 1893, Bertillon presented the (International) Classification of Causes of Death at the meeting of the International Statistical Institute in Chicago, where it was adopted by several cities and countries.
  • In 1898, the American Public Health Association recommended its adoption in North America and that the classification be revised every 10 years.
  • In 1900, the First International Conference to revise the Bertillon Classification of Causes of Death was held in Paris.
  • In 1909, non-fatal diseases (morbidity) were added.
  • From 1948 until now, the World Health Organization(WHO) has promoted and managed ICD, starting in 1948 with the sixth revision of the International Classification of Diseases, Injuries and Causes of Death.
Figure 1
Descriptive text is not available for this image
The International Classification of Diseases (ICD). This bar chart documents the time interval between each Revision of the International Classification of Diseases (ICD), 1900–2018. The horizontal lower bar indicates the number of terms related to congenital heart disease (CHD) listed in each ICD version.
Figure 2
Descriptive text is not available for this image
The International Classification of Diseases (ICD). This bar chart documents the time interval between each Revision of the International Classification of Diseases (ICD), 1900–2021. The horizontal lower bar indicates the number of terms related to congenital heart disease (CHD) listed in each ICD version.

According to WHO, “ICD is the foundation for the identification of health trends and statistics globally, and the international standard for reporting diseases and health conditions. It is the diagnostic classification standard for all clinical and research purposes. ICD defines the universe of diseases, disorders, injuries and other related health conditions, listed in a comprehensive, hierarchical fashion” [https://www.who.int/standards/classifications/classification-of-diseases ]. The ICD-11 development mission was “To produce an international disease classification that is ready for electronic health records that will serve as a standard for scientific comparability and communication”.[105] ICD-11 was officially launched on-line by the WHO in June 2018 and endorsed by the World Health Assembly on 25 May 2019. The WHO states that ICD-11 is to be “The global standard for health data, clinical documentation, and statistical aggregation”, that it is “scientifically up-to-date and designed for use in the digital world with state-of-the art technology to reduce the costs of training and implementation”, and that its “multilingual design facilitates global use” [https://www.who.int/classifications/classification-of-diseases ]. The purpose of ICD-11 “is to allow the systematic recording, analysis, interpretation, and comparison of mortality and morbidity data collected in different countries or areas and at different times”.[105] The ICD-11 project began in earnest in 2007. Importantly, ICD-11 incorporates textual definitions. With the creation of ICD-11, for the first time, the revision process moved away from reliance on large meetings of national delegations of health statisticians, wherein those who voiced their opinion strongest would dominate the content of the paper-based output utilizing “decibel diplomacy"!!! In contrast, the ICD-11 revision process is dependent upon international expert clinicians, with digital curation, the incorporation of wide peer review, and extensive field testing. “ICD-11 has been adopted by the Seventy-second World Health Assembly in May 2019 and comes into effect on 1 January 2022” [https://www.who.int/standards/classifications/classification-of-diseases ].

The task of creating ICD-11 was divided into content specific Topic Advisory Groups, with related Working Groups led by Managing Editors and chaired by specialist clinicians with an intentionally wide geographic spread. From 2009 through to 2016, the Managing Editor coordinated a series of meetings, some face-to-face but mostly teleconferences, beginning with the hierarchical structure and terms within ICD-10, and initially producing an evolving alpha draft. In 2012, a beta draft was published online (https://icd.who.int/dev11/f/en ), coinciding with the authoring process moving to a web-based platform for its entire content.[105] The tool allows online global peer review and submission of comments by both the authors and worldwide interested parties in the field-testing stage.

From the start, clinicians involved in the Topic Advisory Groups have been encouraged to enlist the advice of specialist Societies to aid the process, and to ensure that the content was both up-to-date and had Societal endorsement. This process has resulted in a huge increase in the number of individual terms within ICD-11, with secondary expanse of the hierarchical structure when compared with ICD-10.

In collaboration with WHO, ISNPCHD developed the pediatric and congenital cardiac nomenclature that is now within the eleventh version of the International Classification of Diseases (ICD-11).[105] This unification of IPCCC and ICD-11 is the IPCCC ICD-11 Nomenclature and is the first time that the clinical nomenclature for pediatric and congenital cardiac care and the administrative nomenclature for pediatric and congenital cardiac care are harmonized.[105] The resultant congenital cardiac component of ICD-11 was increased from 29 CHD diagnostic terms with associated codes in ICD-9 and 73 CHD diagnostic terms with associated codes in ICD-10 to 318 diagnostic terms submitted by ISNPCHD through 2018 for incorporation into ICD-11.[105] 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 and some of which provide greater granularity than the ISNPCHD thought was originally acceptable, such as individual codes for the various types of aortic arch branch isolation or having an aberrant origin. Thus, the total number of pediatric and congenital cardiac terms in ICD-11 is 367. (Table 1 and Table 2 and Table 3). Populating ICD-11 by the content-specific Topic Advisory Groups was not always without controversy, with at times, for example, heated and prolonged discussions between the Rare Diseases Topic Advisory Group and several Internal Medicine Topic Advisory Workings Groups, including the Cardiovascular Working Group, over the hierarchy to be included or excluded. Tables 1 and 2 present the diagnostic hierarchy (Table 1) and definitions (Table 2) of the 318 codes submitted by ISNPCHD to compose the IPCCC ICD-11 Nomenclature, as well as the additional 49 scientifically correct or legacy terms added by the WHO ICD-11 team. As these additional 49 entities have now been added to IPCCC, ISNPCHD has provided the needed definitions for these terms (as presented in Table 2). Other legacy and scientifically incorrect terms inserted into the ICD-11 Foundation by the WHO ICD-11 team that ISNPCHD judged to be obsolete or meaningless, such as “Transposition of the aorta” and “Accessory heart”, have been highlighted to WHO and they have been made ‘obsolete’ within the system – meaning that these terms are retained for legacy purposes but not visible or easily searchable. Therefore, Tables 1, 2, and 3 present the 367 terms that are part of IPCCC and also the pediatric and congenital cardiac component of ICD-11, a nomenclature system that will, once implemented, harmonize the administrative nomenclature for pediatric and congenital cardiac care with the clinical nomenclature for pediatric and congenital cardiac care, for the first time ever.

A. The Foundation Component of ICD-11 (ICD-11 Foundation)

The full ICD-11 content is known as the ICD-11 Foundation, and represents the entire ICD-11 universe, divided into 26 sections, and accessed digitally [https://icd.who.int/dev11/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f455013390 ]. The 318 diagnostic terms for CHD that were submitted by ISNPCHD in 2018 reside in the Foundation Component of ICD-11, within the Developmental Anomalies section, with the parent term “Structural developmental anomaly of heart or great vessels”, along with the additional 49 terms added to IPCCC by the WHO ICD-11 team since 2018.

B. The ICD-11 Mortality and Morbidity Statistics version (ICD-11 MMS)

Another feature of ICD-11 is that it is designed to be explicitly stratified to cater to different users, such as primary care, traditional medicine, and public health, producing so-called linearizations or “Tabular Lists”. The initial and most important overall linearization of ICD-11 was that published in July 2018 as the Mortality and Morbidity Statistics version, known as ICD-11-MMS, with a ‘blue’ website: [https://icd.who.int/browse11/l-m/en ], which is separate from the ‘orange’ ICD-11 Foundation website: [https://icd.who.int/dev11/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f455013390 ].

ICD-11-MMS is the nearest equivalent to previous ICD versions, includes a printed copy of top-level terms, and is designed to collect global data at a level of detail sufficient to capture important trends in the causes of death and prevalence of major disease entities. It is also the likely diagnostic coding system that will used by nations for billing purposes. To achieve this objective, WHO in effect top-sliced the ICD-11 Foundation level content to include relevant higher-level terms, although not always with the input of clinicians. In addition, and consistent with previous ICD versions, the WHO has added two additional generic terms in each subsection of the ICD-11-MMS:

  1. “Other specified ߪ disease” (Y-codes). For example: LA89.Y Other specified functionally univentricular heart
  2. “Diseaseߪ, unspecified” (Z-codes), which are equivalent to Not Otherwise Specified (NOS) in previous ICD versions. For example: LA89.Z Functionally univentricular heart, unspecified. Of note is that LA89 itself is the MMS code for Functionally univentricular heart.

Another example of the Y and Z codes is provided below:

  1. Other specified ߪ disease” (Y-codes). For example: LA87.0Y Other specified anomaly of tricuspid valve
  2. “Diseaseߪ, unspecified” (Z-codes). For example: LA87.0Z Congenital anomaly of tricuspid valve, unspecified. Of note is that LA87.0 itself is the MMS code for Congenital anomaly of tricuspid valve.

These Y and Z codes do not appear in the ICD-11 Foundation and are unique to the ICD-11-MMS version (as described in the following discussion). For instance, the term Straddling tricuspid valve can be found in ICD-11 Foundation, but is not listed in ICD-11 MMS. If coding with ICD-11 MMS, the code LA87.0Y should be used to indicate that a more specific diagnosis is known.

For CHD, of the 367 pediatric and congenital cardiac terms currently in the ICD-11 Foundation, a subset of 104 terms were retained and appear in the ICD-11-MMS linearization. As the ICD-11-MMS is likely to be the first component of ICD-11 to be adopted by countries worldwide, ISNPCHD has created a many-to-one unidirectional map of the CHD ICD-11 Foundation level content to the CHD ICD-11-MMS content within Developmental Anomalies (Chapter 20). This many-to-one unidirectional map of the CHD ICD-11 Foundation level content to the CHD ICD-11-MMS is provided in Table 3 of this chapter.

Clinical Nomenclature Versus Administrative Nomenclature

Several studies have examined the relative utility of clinical and administrative nomenclature for the evaluation of quality of care for patients undergoing treatment for pediatric and congenital cardiac disease. Evidence from four investigations suggests that the validity of coding of lesions seen in the congenitally malformed heart via the 9th Revision of the International Classification of Diseases (ICD-9) is poor.[65],[91],[122],[123]

  • First, in a series of 373 infants with congenital cardiac defects at Children’s Hospital of Wisconsin, investigators reported that only 52% of the cardiac diagnoses in the medical records had a corresponding code from the ICD-9 in the hospital discharge database.[122]
  • Second, the Hennepin County Medical Center discharge database in Minnesota identified all infants born during 2001 with a code for congenital cardiac disease using ICD-9. A review of these 66 medical records by physicians was able to confirm only 41% of the codes contained in the administrative database from ICD-9.[123]
  • Third, 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 concluded that analyses based on the codes available in ICD-9 are likely to “have substantial misclassification” of congenital cardiac disease.
  • Fourth, a study was performed using linked patient data (2004-2010) from the Society of Thoracic Surgeons Congenital Heart Surgery (STS-CHS) Database (clinical registry) and the Pediatric Health Information Systems (PHIS) database (administrative database) from hospitals participating in both in order to evaluate differential coding/classification of operations between datasets and subsequent impact on outcomes assessment.[91] The cohort included 59,820 patients from 33 centers. There was a greater than 10% difference in the number of cases identified between data sources for half of the benchmark operations. The negative predictive value (NPV) of the administrative (versus clinical) data was high (98.8%-99.9%); the positive predictive value (PPV) was lower (56.7%-88.0%). These differences translated into significant differences in outcomes assessment, ranging from an underestimation of mortality associated with truncus arteriosus repair by 25.7% in the administrative versus clinical data (7.01% versus 9.43%; p = 0.001) to an overestimation of mortality associated with ventricular septal defect (VSD) repair by 31.0% (0.78% versus 0.60%; p = 0.1). 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.

As discussed below, these challenges and problems persist with the 10th Revision of the International Classification of Diseases (ICD-10). Several potential reasons can explain the poor diagnostic accuracy of administrative databases and codes from ICD-9 and even ICD-10:

  • accidental miscoding
  • coding performed by medical records clerks who have never seen the actual patient (i.e., coding performed by personnel not involved in the care of the patient)
  • contradictory or poorly described information in the medical record
  • lack of diagnostic specificity for congenital cardiac disease in the codes of ICD-9
  • inadequately trained medical coders.

Although one might anticipate some improvement in diagnostic specificity with the adoption of ICD-10 by the United States, it is still substantially deficient compared to that currently achieved with the clinical nomenclature used in clinical registries. (ICD-9 has only 29 congenital cardiac codes and ICD-10 has 73 possible congenital cardiac terms.) It will not be until there is implementation of the pediatric and congenital cardiac components of ICD-11 that harmonization of clinical and administrative nomenclature will be achieved with the resolution, therefore, of many of these challenging issues.

Additional Principles of Nomenclature and Classification (Crossmapping Issues and the Development of Crossmapping Rules)

The process of crossmapping of systems of nomenclature and creating the IPCCC ICD-11 Nomenclature has allowed ISNPCHD to clarify several issues concerning nomenclature and databases that had been challenging to resolve[41],[124],[125],[126]:

  • Generic terms in the lists of nomenclature, that is terms ending in NOS (not otherwise specified), Other specified, or (unspecified)
  • Nonspecific terminology in the lists of nomenclature meant to allow further description in the nomenclature lists, that is terms ending in Other or (DESCRIBE)
  • The meaning of the words right and left in the lists of nomenclature, or lateralization
  • Structural differences between the systems of nomenclature

A brief review of these concepts will allow one to gain an enhanced understanding of the IPCCC ICD-11 Nomenclature.

Optimal performance from systems of nomenclature can be expected in an environment where the database, or system for entry of data, has certain standard regulations and requirements.[124] The person entering the data, the “nomenclature coder”, must be forced to choose from the choices in the list of nomenclatures, and not be allowed to type free text directly into the fields for “Diagnoses” and “Procedures”. A separate “Comments” field will then allow further free text to add additional description to any individual diagnosis or procedure that has been chosen. The crossmapping, and the systems themselves, will work effectively in environments that follow this basic rule or principle. This fundamental principle also leads to logical solutions for the first two issues above.[124]

All terms in the nomenclature lists theoretically end in NOS or (unspecified), in that one can always create further subdivisions for virtually any diagnosis or procedure or term. Therefore, the generic term on its own is self-explanatory, without the need for other clarifying nomenclature, such as NOS or (unspecified) being affixed. These suffixes are consequently redundant and not necessary.[124]

While the ICD-11 Foundation does not contain terms ending in NOS (not otherwise specified) or (unspecified), the ICD-11 MMS list contains many terms ending in Y = “Other specifiedߪ.”, or Z = “ߪ, unspecified”. For example, for the term Tetralogy of Fallot, three choices appear in ICD-11 MMS:

  • Tetralogy of Fallot (LA88.2),
  • Other specified tetralogy of Fallot (LA88.2Y), and
  • Tetralogy of Fallot, unspecified (LA88.2Z).

In fact, many of the pediatric and congenital cardiac terms in the ICD-11 Foundation will be crossmapped to these Y or Z terms in ICD-11 MMS. The fact that the ICD-11-MMS version retains these two legacy concepts (codes ending in Y or Z) and associated terms should not encourage the practicing congenital cardiac clinician to use these terms; in fact, it is recommended that the clinician restricts registry coding to the diagnostic terms within the ICD-11 Foundation, whilst utilizing the map here provided (Table 3) if ICD-11-MMS codes are required for administrative or billing purposes.

Terms ending in Other are problematic as well, for several reasons.[124] The appendage Other could confer different meanings to a term depending on the list in which it is included, and any entry containing the appended term Other may change meaning over time as additional terms are added to the parent list from which the term is derived. In some systems of nomenclature, the intent of the terms with the suffix Other may be to allow for the further description of related terms or choices not appearing in the list, similar to the use of the suffix (DESCRIBE). The use of the suffix (DESCRIBE) is preferable to the suffix Other because the suffix (DESCRIBE) circumvents the above shortcomings and implications inherent in the word Other. It is apparent, however, that it is actually completely unnecessary to specify that a family of terms can have further items added, when the database environment follows the rule discussed above; namely, that no free text is permitted in the fields for “Diagnoses” or “Procedures”, whilst a separate “Comments” field exists to allow further description of any chosen item. Thus, theoretically, all terms in the lists are suffixed with (DESCRIBE), and the coder has the option to add further detail to any selected term. As a consequence, generic terms ending in (DESCRIBE) or Other become redundant and not necessary.[124]

While the ICD-11 Foundation does not contain terms ending in (DESCRIBE) or Other, the ICD-11 MMS list contains many terms containing Other. As discussed above in reference to terms ending in NOS or (unspecified), the fact that the ICD-11-MMS version retains the legacy concept of terms ending in Other and associated terms should not encourage the practicing congenital cardiac clinician to use these terms; in fact, it is recommended that the clinician restricts registry coding to the diagnostic terms within the ICD-11 Foundation, whilst utilizing the map here provided (Table 3) if ICD-11-MMS codes are required for administrative or billing purposes.

When discussing cardiac chambers, such as atriums and ventricles, and spatial relationships, the words left and right can be confusing.[124] Rules were therefore created to provide consistency and accuracy of descriptive terms of anatomical phenotypes. For cardiac chambers, unless otherwise stated, left refers to morphologically left, and right refers to morphologically right. Thus, left ventricle means the morphologically left ventricle, left atrium refers to the morphologically left atrium, and right atrial appendage refers to the morphologically right atrial appendage, and so on. When discussing cardiac chambers, the words left and right do not imply sidedness or position. If one wishes to describe the position or sidedness of a cardiac chamber, it is necessary to use terms such as left - sided ventricle. The term left ventricle, therefore, merely means the morphologically left ventricle, and does not mean or imply left-sidedness or right-sidedness. Similarly, it does not imply connections to the right or left atrium, or the pulmonary or systemic circulations. In contrast, when describing the superior caval vein or inferior caval vein, and using the prefix left or right, it is the spatial position that is being alluded to, rather than any other connection or phenotypic variation that may exist.[124]

A separate issue is the fundamental structure of systems for nomenclature.[124] Some systems of nomenclature use a molecular structure, with an incrementally more complex diagnostic or procedural combination of terms. Each combination is considered a single diagnostic unit, which theoretically could have its own numerical code. In contrast, other systems of nomenclature use an atomic structure, so that a complex diagnosis would have separate numerical codes for each element. This variation in structure of the various systems of nomenclature means that a map between an atomic system and a molecular system would have a series of atomic codes being equivalent to one molecular code. Thus, the combination term from the molecular nomenclature “TGA, VSD – LVOTO” (transposition of the great arteries with ventricular septal defect and left ventricular outflow tract obstruction) is equivalent to the three entries in an atomic system: Transposition of the great arteries (Discordant VA connections) (01.05.01), Ventricular Septal Defect (07.10.00), and Left ventricular outflow tract obstruction (07.09.01). Exceptions to this configuration are a few common combinations of lesions or procedures that are so routinely associated with each other that they have been grouped as one discrete diagnosis or procedure in both systems. Examples are: Pulmonary atresia + Ventricular Septal Defect (including Fallot type) (01.01.06), or Arterial and atrial switch procedures (double switch) (12.29.25).

Summary

The IPCCC nomenclature is utilized in multi-institutional registries and databases all over the world, as described in detail in the chapter in the Society of Thoracic Surgeons (STS) Cardiothoracic Surgery E-Book entitled: “Databases for Pediatric and Congenital Cardiac Care”.[127] As health care costs continue to rise, increased emphasis is placed on the need to develop platforms to measure outcomes, quality, and value in medicine and surgery. According to the Merriam-Webster dictionary, quality is defined as “how good or bad something is”.[128] In 1966, Avedis Donabedian (7 January 1919 – 9 November 2000) published the theory that three domains of quality exist in medicine: Structure, Process, and Outcome[129], and this conceptual model became known as Donabedian’s Triad. In 2010, Michael E. Porter, Ph.D. defined value in healthcare as “health outcomes achieved per dollar spent”.[130] Although this definition is often quoted as: “value = quality / cost”, the original manuscript written by Porter and published in The New England Journal of Medicine describes the following equation: “value = outcome / cost”, perhaps demonstrating that the key component of Donabedian’s Triad is outcome[131],[132]! Because the value of healthcare is defined as outcome divided by cost[130], it is necessary to measure both the outcome and the cost of healthcare in order to calculate its value. These concepts of value, cost, and outcome extend over the whole life of the patient. With good coding and modern electronic tracking of data, we can get much closer to real cost to benefit analysis, and not just for the individual patient but also for the family and wider society. As discussed above, standardization of nomenclature is necessary to measure outcomes in healthcare and achieve these objectives.

The art and science of outcomes analysis and quality improvement for pediatric and congenital cardiac care continues to evolve. Multiple chapters and even books have been written about this topic.[124],[125],[126],[131],[132],[133],[134],[135],[136],[137],[138],[139],[140],[141],[142],[143],[144],[145] In this chapter, we have reviewed the evolution of systems of nomenclature and classification for pediatric and congenital cardiac care and presented a global system of nomenclature for pediatric and congenital cardiac care that unifies clinical and administrative nomenclature.

Clinical databases and registries depend on standardized systems of nomenclature and represent a foundational tool in the following inter-related processes[146],[147]

  • measuring the outcomes of medical and surgical practices,
  • developing evidence for best medical and surgical practices,
  • providing actionable feedback to clinicians, and
  • improving quality of care and outcomes.

The ultimate goal of clinical databases and registries is to improve quality of care and outcomes. Standardization of nomenclature is necessary to achieve this goal, and IPCCC ICD-11 Nomenclature has achieved standardization across disciplines, databases, and continents.

Even with the standardization and unification of clinical and administrative nomenclature as described in this chapter, clinicians will still need to enter the correct codes for what they see. However, now that the nomenclature is agreed globally, we can lay out a challenge to software designers to develop more user-friendly coding entry systems than currently exist!

Tables of IPCCC ICD-11 Nomenclature for Congenital Cardiac Diagnostic Terms in ICD-11 Foundation

Table 1: IPCCC ICD-11 Diagnostic Hierarchy presents the diagnostic hierarchy of the pediatric and congenital cardiac terms in the ICD-11 Foundation. Terms that appear in the ICD-11 MMS are presented in rows highlighted in yellow.

Table 2: IPCCC ICD-11 Definitions contains the definitions, commentary, synonyms, and abbreviations for these terms of the pediatric and congenital cardiac terms in the ICD-11 Foundation. Terms that appear in the ICD-11 MMS are presented in rows highlighted in yellow.

Table 3: IPCCC ICD-11 Codes contains the various IPCCC ICD-11 Codes, including the IPCCC codes as well as the ICD-11 Foundation entity numbers and the ICD-11 MMS codes.

Please click here to view the tables

In the tables:

+ = New terms added by the WHO ICD-11 team since the original 318 terms contained in the publication[105] from 2018

** = Terms that code normal human anatomy, but are important to specify when part of a complex congenital cardiac malformation

*** = Terms that are not located in the pediatric and congenital cardiac section of ICD-11

Rows with numbers in the second column labeled “ICD-11 Row Number or Letter” contain terms in the original 318 terms contained in the publication[105] from 2018.

Rows with letters in the second column labeled “ICD-11 Row Number or Letter” contain new terms added by the WHO ICD-11 team since the original 318 terms contained in the publication[105] from 2018.

Acknowledgements

The authors thank the following individuals for their critical contributions to the development of the terminology, hierarchy, and definitions of the IPCCC ICD-11 Nomenclature:

Robert H. Anderson, MD, PhD (Hon), Jeffrey R. Boris, MD, Meryl S. Cohen, MD, Andrew C. Cook, PhD, Adrian Crucean, MD, PhD, Allen D. Everett, MD, Jorge M. Giroud, MD, Marshall Lewis Jacobs, MD, Amy L. Juraszek, MD, Rohit S Loomba, MD, Constantine Mavroudis, MD, Lindsay S. Rogers, MD, Stephen P. Sanders, MD, Stephen P. Seslar, MD, PhD, Diane E. Spicer, BS, PA, Shubhika Srivastava, MBBS, Elif Seda Selamet Tierney, MD, Justin T. Tretter, MD, Lianyi Wang, MD, and Paul Morris Weinberg, MD.

As discussed in the following manuscript, in January 2003, Paul W. Weinberg, MD became one of the original twelve members of the “Nomenclature Working Group” (NWG), a committee which eventually formed The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD) [https://www.IPCCC.net]. The development of The International Paediatric and Congenital Cardiac Code (IPCCC) would not have been possible without the tremendous contributions of Dr. Weinberg:[107]

Meryl S. Cohen and Jeffrey P. Jacobs. In Memoriam: Paul Morris Weinberg, MD. Cardiol Young. 2021 Jan;31(1):1-10. doi: 10.1017/S1047951121000123.PMID: 3365588.

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  49. Jacobs JP, Elliott MJ, Anderson RH, Quintessenza JA, Chai PJ, Morell VO, Botero LM, van Gelder HM, Badhwar V, Kanani M, Cohen GA, Burke RP. Creating a Database with Cardioscopy and Intra-Operative Imaging. In 2005 Supplement to Cardiology in the Young: Controversies of the Ventriculo-Arterial Junctions and Other Topics, Jacobs JP, Wernovsky G, Gaynor JW, and Anderson RH, editors. Cardiology in the Young, Volume 15, Supplement 1: 184 - 189, February 2005.
  50. Jacobs JP, Maruszewski B, Tchervenkov CI, Lacour-Gayet FG, Jacobs ML, Clarke DR, Gaynor JW, Spray TL, Stellin G, Elliott MJ, Ebels T, Franklin RCG, Béland MJ, Kurosawa H, Aiello VD, Colan SD, Krogmann ON, Weinberg P, Tobota Z, Dokholyan RS, Peterson ED, Mavroudis C. The Current Status and Future Directions of Efforts to create a Global Database for the Outcomes of Therapy for Congenital Heart Disease. In 2005 Supplement to Cardiology in the Young: Controversies of the Ventriculo-Arterial Junctions and Other Topics, Jacobs JP, Wernovsky G, Gaynor JW, and Anderson RH, editors. Cardiology in the Young, Volume 15, Supplement 1: 190 - 198, February 2005.
  51. Jacobs JP, Jacobs ML, Maruszewski B, et al. Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2005;80(6):2278-83; discussion 2283-4.  [PMID:16305889]
  52. Jacobs JP, Franklin RCG, Jacobs ML, Colan SD, Tchervenkov CI, Maruszewski B, Gaynor JW, Spray TL, Stellin G, Aiello VD, Béland MJ, Krogmann ON, Kurosawa H, Weinberg PM, Elliott MJ, Mavroudis C, Anderson R. Classification of the Functionally Univentricular Heart: Unity from mapped codes. In 2006 Supplement to Cardiology in the Young: Controversies and Challenges in the Management of the Functionally Univentricular Heart, Jacobs JP, Wernovsky G, Gaynor JW, and Anderson RH (editors). Cardiology in the Young, Volume 16, Supplement 1: 9 – 21, February 2006.
  53. Jacobs JP, Mavroudis C, Jacobs ML, et al. What is operative mortality? Defining death in a surgical registry database: a report of the STS Congenital Database Taskforce and the Joint EACTS-STS Congenital Database Committee. Ann Thorac Surg. 2006;81(5):1937-41.  [PMID:16631716]
  54. Tchervenkov CI, Jacobs JP, Weinberg PM, et al. The nomenclature, definition and classification of hypoplastic left heart syndrome. Cardiol Young. 2006;16(4):339-68.  [PMID:16839428]
  55. Jacobs JP, Franklin RC, Wilkinson JL, et al. The nomenclature, definition and classification of discordant atrioventricular connections. Cardiol Young. 2006;16 Suppl 3:72-84.  [PMID:17378044]
  56. Jacobs JP, Mavroudis C, Jacobs ML, et al. Nomenclature and databases - the past, the present, and the future : a primer for the congenital heart surgeon. Pediatr Cardiol. 2007;28(2):105-15.  [PMID:17486390]
  57. Jacobs JP, Anderson RH, Weinberg P, Walters III HL, Tchervenkov CI, Del Duca D, Franklin RCG, Aiello VD, Béland MJ, Colan SD, Gaynor JW, Krogmann ON, Kurosawa H, Maruszewski B, Stellin G, Elliott MJ. The nomenclature, definition and classification of cardiac structures in the setting of heterotaxy. In 2007 Supplement to Cardiology in the Young: Controversies and Challenges Facing Paediatric Cardiovascular Practitioners and their Patients, Anderson RH, Jacobs JP, and Wernovsky G, editors. Cardiology in the Young, Volume 17, Supplement 2, pages 1–28, doi: 10.1017/S1047951107001138, September 2007.
  58. Jacobs JP, Wernovsky G, Elliott MJ. Analysis of outcomes for congenital cardiac disease: can we do better? Cardiol Young. 2007;17 Suppl 2:145-58.  [PMID:18039408]
  59. Jacobs JP, Jacobs ML, Mavroudis C, Maruszewski B, Tchervenkov CI, Lacour-Gayet FG, Clarke DR, Yeh T, Walters HL 3rd, Kurosawa H, Stellin G, Ebels T, Elliott MJ, Vener DF, Barach P, Benavidez OJ, Bacha EA. What is Operative Morbidity? Defining Complications in a Surgical Registry Database: A Report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee. The Annals of Thoracic Surgery;84:1416-1421, October 2007.
  60. Jacobs JP. (Editor). 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Cardiology in the Young, Volume 18, Supplement S2, pages 1 –530, December 9, 2008.
  61. Jacobs JP. Introduction – Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 1-37, December 9, 2008.
  62. Jacobs JP, Jacobs ML, Mavroudis C, Backer CL, Lacour-Gayet FG, Tchervenkov CI, Franklin RCG, Béland MJ, Jenkins KJ, Walters III H, Bacha EA, Maruszewski B, Kurosawa H, Clarke DR, Gaynor JW, Spray TL, Stellin G, Ebels T, Krogmann ON, Aiello VD, Colan SD, Weinberg P, Giroud JM, Everett A, Wernovsky G, Martin J. Elliott MJ, Edwards FH. Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 38–62, December 9, 2008.
  63. Franklin RCG, Jacobs JP, Krogmann ON, Béland MJ, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL 3rd, Weinberg P, Anderson RH. Nomenclature for congenital and paediatric cardiac disease: Historical perspectives and The International Pediatric and Congenital Cardiac Code. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 70–80, December 9, 2008.
  64. Jacobs JP, Benavidez OJ, Bacha EA, Walters HL 3rd, Jacobs ML. The nomenclature of safety and quality of care for patients with congenital cardiac disease: a report of the Society of Thoracic Surgeons Congenital Database Taskforce Subcommittee on Patient Safety. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 81–91, December 9, 2008.
  65. Strickland MJ, Riehle-Colarusso TJ, Jacobs JP, et al. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. Cardiol Young. 2008;18 Suppl 2:92-100.  [PMID:19063779]
  66. Welke KF, Karamlou T, Diggs BS. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – a comparison of administrative and clinical data. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 137–144, December 9, 2008.
  67. Bacha EA, Cooper D, Thiagarajan R, Franklin RCG, Krogmann O, Deal B, Mavroudis C, Shukla A, Yeh Jr T, Barach P, Wessel D, Stellin G, Colan SD. Cardiac complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 196–201, December 9, 2008.
  68. Deal BJ, Mavroudis C, Jacobs JP, et al. Arrhythmic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18 Suppl 2:202-5.  [PMID:19063792]
  69. Shann KG, Giacomuzzi CR, Harness L, et al. Complications relating to perfusion and extracorporeal circulation associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18 Suppl 2:206-14.  [PMID:19063793]
  70. Cooper DS, Jacobs JP, Chai PJ, Jaggers JJ, Barach P, Beekman III RH, Krogmann O, Manning P. Pulmonary complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 215–221, December 9, 2008.
  71. Welke KW, Dearani JA, Ghanayem NS, Béland MJ, Shen I, Ebels T. Renal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 222–225, December 9, 2008.
  72. Checchia PA, Karamlou T, Maruszewski B, Ohye RG, Bronicki R, Dodge-Khatami A. Haematological and infectious complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 226–233, December 9, 2008.
  73. Bird GL, Jeffries HE, Licht DJ, Wernovsky G, Weinberg PM, Pizarro C, Stellin G. Neurological complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 234–239, December 9, 2008.
  74. Ghanayem NS, Dearani JA, Welke KF, Béland MJ, Shen I, Ebels T. Gastrointestinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 240–244, December 9, 2008.
  75. Walters HL 3rd, Jeffries HE, Cohen GA, Klitzner T. Congenital cardiac surgical complications of the integument, vascular system, vascular-line(s), and wounds: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 245–255, December 9, 2008.
  76. Dickerson H, Cooper DS, Checchia PA, et al. Endocrinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18 Suppl 2:256-64.  [PMID:19063800]
  77. Jeffries H, Bird G, Law Y, Wernovsky G, Weinberg P, Pizarro C, Stellin G. Complications related to the transplantation of thoracic organs: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 265–270, December 9, 2008.
  78. Vener DV, Tirotta CF, Andropoulos D, Barach P. Anaesthetic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 265–270, December 9, 2008.
  79. The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Part IV – the dictionary of definitions of complications associated with the treatment of patients with congenital cardiac disease. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, Prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jeffrey P. Jacobs, MD (editor). Cardiology in the Young, Volume 18, Issue S2 (Suppl. 2), pp 282–530, December 9, 2008.
  80. Jacobs JP, Quintessenza JA, Burke RP, et al. Analysis of regional congenital cardiac surgical outcomes in Florida using the Society of Thoracic Surgeons Congenital Heart Surgery Database. Cardiol Young. 2009;19(4):360-9.  [PMID:19575843]
  81. Jorge M. Giroud, Jeffrey P. Jacobs, Diane Spicer, Carl Backer, Gerard R. Martin, Rodney C. G. Franklin, Marie J. Béland, Otto N. Krogmann, Vera D. Aiello, Steven D. Colan, Allen D. Everett, J. William Gaynor, Hiromi Kurosawa, Bohdan Maruszewski, Giovanni Stellin, Christo I. Tchervenkov, Henry L. Walters III, Paul Weinberg, Robert H. Anderson, and Martin J. Elliott. Report From The International Society for Nomenclature of Paediatric and Congenital Heart Disease: Creation of a Visual Encyclopedia Illustrating the Terms and Definitions of the International Pediatric and Congenital Cardiac Code. World Journal for Pediatric and Congenital Heart Surgery October 2010 1: 300-313, doi:10.1177/2150135110379622, October 2010.
  82. Bergersen L, Everett AD, Giroud JM, et al. Report from The International Society for Nomenclature of Paediatric and Congenital Heart Disease: cardiovascular catheterisation for congenital and paediatric cardiac disease (Part 1 - Procedural nomenclature). Cardiol Young. 2011;21(3):252-9.  [PMID:21310103]
  83. Bergersen L, Giroud JM, Jacobs JP, et al. Report from The International Society for Nomenclature of Paediatric and Congenital Heart Disease: cardiovascular catheterisation for congenital and paediatric cardiac disease (Part 2 - Nomenclature of complications associated with interventional cardiology). Cardiol Young. 2011;21(3):260-5.  [PMID:21310094]
  84. Weintraub WS, Karlsberg RP, Tcheng JE, et al. ACCF/AHA 2011 key data elements and definitions of a base cardiovascular vocabulary for electronic health records: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Clinical Data Standards. Circulation. 2011;124(1):103-23.  [PMID:21646493]
  85. Weintraub WS, Karlsberg RP, Tcheng JE, et al. ACCF/AHA 2011 key data elements and definitions of a base cardiovascular vocabulary for electronic health records: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Clinical Data Standards. J Am Coll Cardiol. 2011;58(2):202-22.  [PMID:21652161]
  86. Jorge M. Giroud, Jeffrey P. Jacobs, F. Jay Fricker, Diane Spicer, Carl Backer, Rodney C. G. Franklin, Marie J. Béland, Otto N. Krogmann, Vera D. Aiello, Steven D. Colan, Allen D. Everett, J. William Gaynor, Hiromi Kurosawa, Bohdan Maruszewski, Giovanni Stellin, Christo I. Tchervenkov, Henry L. Walters III, Paul Weinberg, Mark A Fogel, Marshall Lewis Jacobs, Martin J. Elliott, and Robert H. Anderson. Proposal for a Web based “Global Virtual Museum of Congenital Cardiac Pathology”. Progress in Pediatric Cardiology. 2012 Jan;33(1):91–97. doi:10.1016/j.ppedcard.2011.12.015. In: Steven E. Lipshultz, MD, Paul Barach, MD, MPH, Jeffrey P. Jacobs, MD, and Peter Laussen, MBBS (Editors). Progress in Pediatric Cardiology: The Future of Pediatric and Congenital Cardiac Care Special Part 2. 2012 Jan;33(1):1–101.
  87. Giroud JM, Aiello VD, Spicer DE, Anderson RH. The Archiving Working Group of the International Society for Nomenclature of Paediatric and Congenital Heart Disease: A Visual Encyclopedia Illustrating the Terms and Definitions of the International Paediatric and Congenital Cardiac Code. Congenital Cardiology Today. 2012;10(8):8-10.
  88. Aiello VD, Anderson RH, Giroud JM, Spicer DE. Image of the Month (Aortic valve pathology, Bicuspid and Pulmonary valve pathology, Bicuspid) - August 2012 - Presented by The Archiving Working Group. Congenital Cardiology Today. 2012;10(8):14-15.
  89. Anderson RH, Aiello VD, Spicer DE, Jacobs JP, Giroud JM. Image of the Month #2 (Interrupted aortic arch [IAA], Type B2 [Interruption between the carotid and subclavian arteries with both subclavian arteries arising from the aorta distal to the interruption]) - October 2012 - Presented by The Archiving Working Group. Congenital Cardiology Today. 2012;10(10):20-21.
  90. Aiello VD, Spicer DE, Jacobs JP, Giroud JM, Anderson RH. Image of the Month #3 (Total anomalous pulmonary venous connection [TAPVC], Type 4 [mixed]) - December 2012 - Presented by The Archiving Working Group. Congenital Cardiology Today. 2012;10(12):8-9.
  91. Pasquali SK, Peterson ED, Jacobs JP, et al. Differential case ascertainment in clinical registry versus administrative data and impact on outcomes assessment for pediatric cardiac operations. Ann Thorac Surg. 2013;95(1):197-203.  [PMID:23141907]
  92. Overman DM, Jacobs JP, Prager RL, et al. Report from the Society of Thoracic Surgeons National Database Workforce: clarifying the definition of operative mortality. World J Pediatr Congenit Heart Surg. 2013;4(1):10-2.  [PMID:23799748]
  93. Spicer DE, Jacobs JP, Giroud JM, Anderson RH, Aiello VD. Image of the Month #4 (Single ventricle, DILV) - February 2013 - Presented by The Archiving Working Group. Congenital Cardiology Today. 2013;11(2):13-14.
  94. Jacobs JP, Giroud JM, Anderson RH, Aiello VD, Spicer DE. Image of the Month #5 (VSD, Type 2 [Perimembranous] [Paramembranous]) - May 2013 - Presented by The Archiving Working Group. Congenital Cardiology Today. 2013;11(5):8-9.
  95. Hendel RC, Bozkurt B, Fonarow GC, et al. ACC/AHA 2013 methodology for developing clinical data standards: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Data Standards. J Am Coll Cardiol. 2014;63(21):2323-34.  [PMID:24246166]
  96. Hendel RC, Bozkurt B, Fonarow GC, et al. ACC/AHA 2013 methodology for developing clinical data standards: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Data Standards. Circulation. 2014;129(22):2346-57.  [PMID:24243855]
  97. Jantzen DW, He X, Jacobs JP, et al. The Impact of Differential Case Ascertainment in Clinical Registry Versus Administrative Data on Assessment of Resource Utilization in Pediatric Heart Surgery. World J Pediatr Congenit Heart Surg. 2014;5(3):398-405.  [PMID:24958042]
  98. Jacobs JP. The science of assessing the outcomes and improving the quality of the congenital and paediatric cardiac care. Curr Opin Cardiol. 2015;30(1):100-11.  [PMID:25469591]
  99. Pasquali SK, He X, Jacobs JP, et al. Measuring hospital performance in congenital heart surgery: administrative versus clinical registry data. Ann Thorac Surg. 2015;99(3):932-8.  [PMID:25624057]
  100. Hicks KA, Tcheng JE, Bozkurt B, et al. 2014 ACC/AHA Key Data Elements and Definitions for Cardiovascular Endpoint Events in Clinical Trials: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Data Standards (Writing Committee to Develop Cardiovascular Endpoints Data Standards). Circulation. 2015;132(4):302-61.  [PMID:25547519]
  101. Hicks KA, Tcheng JE, Bozkurt B, et al. 2014 ACC/AHA Key Data Elements and Definitions for Cardiovascular Endpoint Events in Clinical Trials: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Data Standards (Writing Committee to Develop Cardiovascular Endpoints Data Standards). J Am Coll Cardiol. 2015;66(4):403-69.  [PMID:25553722]
  102. Seslar SP, Shepard CW, Giroud JM, et al. Lost treasures: a plea for the systematic preservation of cadaveric heart specimens through three-dimensional digital imaging. Cardiol Young. 2015;25(8):1457-9.  [PMID:26675590]
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  107. Cohen MS, Jacobs JP. In Memoriam: Paul Morris Weinberg, MD. Cardiol Young. 2021;31(1):1-10.  [PMID:33655881]
  108. Tretter JT, Jacobs JP. Global Leadership in Paediatric and Congenital Cardiac Care: "Coding our way to improved care: an interview with Rodney C. G. Franklin, MBBS, MD, FRCP, FRCPCH". Cardiol Young. 2021;31(1):11-19.  [PMID:33526161]
  109. Jeffrey P. Jacobs, MD, Rodney C. G. Franklin, MD, Marie J. Béland, MD, Diane E. Spicer, BS, PA, Steven D. Colan, MD, Henry L. Walters III, MD, Frédérique Bailliard, MD, Lucile Houyel, MD, James D. St. Louis, MD, Leo Lopez, MD, Vera D. Aiello, MD, PhD, J. William Gaynor, MD, Otto N. Krogmann, MD, Hiromi Kurosawa, MD, Bohdan J. Maruszewski, MD, PhD, Giovanni Stellin, MD, Paul Morris Weinberg, MD, Marshall Lewis Jacobs, Jeffrey R. Boris, MD, Meryl S. Cohen, MD, Allen D. Everett, MD, Jorge M. Giroud, MD, Kristine J. Guleserian, MD, Marina L. Hughes, DPhil, FRACP, Amy L. Juraszek, MD, Stephen P. Seslar, MD, PhD, Charles W. Shepard, MD, Shubhika Srivastava, MBBS, Andrew C. Cook, PhD, Adrian Crucean, MD, PhD, Lazaro E. Hernandez, MD, Rohit S Loomba, MD, Lindsay S. Rogers, MD, Stephen P. Sanders, MD, Jill J Savla, MD, MSCE, Elif Seda Selamet Tierney, MD, Justin T. Tretter, MD, Lianyi Wang, MD, Martin J. Elliott, MD, Constantine Mavroudis, MD, Christo I. Tchervenkov, MD. 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). Cardiology in the Young. July 2021.
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  114. Hoffman JIe. The global burden of congenital heart disease. Cardiovasc J Afr. 2013;24(4):141-5.  [PMID:24217047]
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  116. St Louis JD, Kurosawa H, Jonas RA, et al. The World Database for Pediatric and Congenital Heart Surgery: The Dawn of a New Era of Global Communication and Quality Improvement in Congenital Heart Disease. World J Pediatr Congenit Heart Surg. 2017;8(5):597-599.  [PMID:28901228]
  117. O'Brien SM, Clarke DR, Jacobs JP, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138(5):1139-53.  [PMID:19837218]
  118. Jacobs ML, O'Brien SM, Jacobs JP, et al. An empirically based tool for analyzing morbidity associated with operations for congenital heart disease. J Thorac Cardiovasc Surg. 2013;145(4):1046-1057.e1.  [PMID:22835225]
  119. Crowe S, Brown KL, Pagel C, et al. Development of a diagnosis- and procedure-based risk model for 30-day outcome after pediatric cardiac surgery. J Thorac Cardiovasc Surg. 2013;145(5):1270-8.  [PMID:22818122]
  120. Rogers L, Brown KL, Franklin RC, et al. Improving Risk Adjustment for Mortality After Pediatric Cardiac Surgery: The UK PRAiS2 Model. Ann Thorac Surg. 2017;104(1):211-219.  [PMID:28318513]
  121. Jacobs JP, O'Brien SM, Hill KD, et al. Refining The Society of Thoracic Surgeons Congenital Heart Surgery Database Mortality Risk Model With Enhanced Risk Adjustment for Chromosomal Abnormalities, Syndromes, and Noncardiac Congenital Anatomic Abnormalities. Ann Thorac Surg. 2019;108(2):558-566.  [PMID:30853592]
  122. Cronk CE, Malloy ME, Pelech AN, et al. Completeness of state administrative databases for surveillance of congenital heart disease. Birth Defects Res A Clin Mol Teratol. 2003;67(9):597-603.  [PMID:14703780]
  123. Frohnert BK, Lussky RC, Alms MA, et al. Validity of hospital discharge data for identifying infants with cardiac defects. J Perinatol. 2005;25(11):737-42.  [PMID:16163368]
  124. Rodney C.G. Franklin, Jeffrey P. Jacobs, Otto N. Krogmann, and Marie J. Béland. Chapter 5: Nomenclature for Congenital and Pediatric Cardiac Disease: Historical Perspectives and the International Pediatric and Congenital Cardiac Code. In: Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 1: Outcomes Analysis. Springer-Verlag London. Pages 1 – 515. ISBN: 978-1-4471-6586-6 (Print). 978-1-4471-6587-3 (Online). Published in 2014. Pages 35 – 50.
  125. Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 1: Outcomes Analysis. Springer-Verlag London. Pages 1 – 515. ISBN: 978-1-4471-6586-6 (Print). 978-1-4471-6587-3 (Online). Published in 2014. [http://www.springer.com/us/book/9781447165866 ].
  126. Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 2: Quality Improvement and Patient Safety. Springer-Verlag London. 2015, Pages 1 – 456. ISBN: 978-1-4471-6565-1 (Print). 978-1-4471-6566-8 (Online). Published in 2014. [http://www.springer.com/us/book/9781447165651 ].
  127. Databases for Pediatric and Congenital Cardiac Care. In: Society of Thoracic Surgeons (STS) Cardiothoracic Surgery E-Book. [https://ebook.sts.org/sts/ ]: Pediatric and Congenital Cardiac Section. Editor: Jeffrey P. Jacobs, MD. Associate Editors: Erle H. Austin, Carl Lewis Backer, Robert (Jake) D.B. Jaquiss, John Edmund Mayer, James S. Tweddell, Winfield J. Wells. Published by The Society of Thoracic Surgeons. For publication 2021.
  128. Definition of quality Merriam-Webster Dictionary. [http://www.merriam-webster.com/dictionary/quality ]. Accessed January 1, 2017.
  129. Donabedian A. Evaluating the quality of medical care. Milbank Mem Fund Q. 1966;44(3):Suppl:166-206.  [PMID:5338568]
  130. Porter ME. What is value in health care? N Engl J Med. 2010;363(26):2477-81.  [PMID:21142528]
  131. Sanchez JA, Barach P, Johnson JK, Jacobs JP. (Editors). Surgical Patient Care: Improving Safety, Quality and Value. Copyright 2017. Publisher: Springer International Publishing, Mew Your, New York. Copyright Holder: Springer International Publishing Switzerland. eBook ISBN: 978-3-319-44010-1. DOI: 10.1007/978-3-319-44010-1. Hardcover ISBN: 978-3-319-44008-8. Edition Number: 1. Number of Pages: 909. Editors: Juan A. Sanchez, M.D., M.P.A., Johns Hopkins University, Baltimore, Maryland, Paul Barach, M.D., M.P.H., Wayne State University, Detroit, Michigan, Julie K. Johnson, M.S.P.H., Ph.D., Northwestern University, Chicago, Illinois, and Jeffrey P. Jacobs, M.D., Johns Hopkins University, Baltimore, Maryland. Published June 2017. [http://www.springer.com/us/book/9783319440088 ].
  132. Jacobs JP. Use of Data from Surgical Registries to Improve Outcomes. Pages 737 – 751. In: Sanchez JA, Barach P, Johnson JK, Jacobs JP. (Editors). Surgical Patient Care: Improving Safety, Quality and Value. Copyright 2017. Publisher: Springer International Publishing, Mew Your, New York. Copyright Holder: Springer International Publishing Switzerland. eBook ISBN: 978-3-319-44010-1. DOI: 10.1007/978-3-319-44010-1. Hardcover ISBN: 978-3-319-44008-8. Edition Number: 1. Number of Pages: 909. Editors: Juan A. Sanchez, M.D., M.P.A., Johns Hopkins University, Baltimore, Maryland, Paul Barach, M.D., M.P.H., Wayne State University, Detroit, Michigan, Julie K. Johnson, M.S.P.H., Ph.D., Northwestern University, Chicago, Illinois, and Jeffrey P. Jacobs, M.D., Johns Hopkins University, Baltimore, Maryland. Published June 2017. [http://www.springer.com/us/book/9783319440088 ].
  133. Jacobs JP. Nomenclature and Classification for Congenital Cardiac Surgery. In: Pediatric Cardiac Surgery, 3rd Edition, Chapter 2, Pages 25 - 38. Mavroudis C and Backer CL, editors, Mosby Inc., An affiliate of Elsevier, Philadelphia, Pennsylvania, 2003.
  134. Jacobs JP. Cardiac Database and Risk Factor Assessment. Outcomes Analysis for Congenital Cardiac Disease. In: Critical Care of Children with Heart Disease. Basic Medical and Surgical Concepts. Edited by Ricardo A. Munoz, Victor O. Morell, Eduardo M. da Cruz, Carol G. Vetterly. Springer Ltd., London, United Kingdom, pages 127 – 142, 2010.
  135. Jacobs JP, Edwards FH. Quality improvement and risk stratification for congenital cardiac surgery. In: Sabiston and Spencer Surgery of the Chest, 8th edition. Edited by Drs. Frank W. Sellke, Pedro J. del Nido and Scott J. Swanson. Elsevier Publishing, Philadelphia, Pennsylvania, pages 2105 – 2123, 2010.
  136. Jacobs JP. STS Congenital Heart Surgery Database. In: Cardiothoracic Surgery Review. Kenneth L. Franco, M.D. and Vinod H. Thourani, M.D., editors. Publishers: Lippincott Williams & Wilkins, a Wolters Kluwer business, Philadelphia, Pennsylvania, pages 1708 – 1715, 2012.
  137. Jacobs JP. Chapter 2. Nomenclature and Classification of Pediatric and Congenital Heart Disease. In: Pediatric Cardiac Surgery, 4th Edition. Mavroudis C and Backer CL, editors, Idriss RF, illustrator. Wiley-Blackwell. Pages 27 – 51. January 2013.
  138. Jacobs JP. Outcomes Analysis and Quality Improvement for the Treatment of Patients with Pediatric and Congenital Heart Disease. In: Pediatric and Congenital Cardiology, Cardiac Surgery and Cardiac Intensive Care: A Comprehensive and Interdisciplinary Interactive Textbook and E-book. Main Editors: Eduardo da Cruz, D-Dunbar Ivy, James Jaggers, Viktor Hraska. Publisher: Springer-Verlag, London, UK. (Pediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care. Editors: Eduardo M. da Cruz, Dunbar Ivy, James Jaggers. ISBN: 978-1-4471-4618-6 [Print], 978-1-4471-4619-3 [Online], Reference Work Title: Pediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care. Copyright: 2014. DOI: 10.1007/978-1-4471-4619-3. Print ISBN: 978-1-4471-4618-6. Online ISBN: 978-1-4471-4619-3.) Publisher: Springer London. Copyright Holder: Springer-Verlag London, Chapter 4, Pages 73-94, Published January 2014.
  139. Paul R. Barach, Jeffrey P. Jacobs, Peter C. Laussen, and Steven E. Lipshultz. Chapter 1: Introduction. In: Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 1: Outcomes Analysis. Springer-Verlag London. Pages 1 – 515. ISBN: 978-1-4471-6586-6 (Print). 978-1-4471-6587-3 (Online). Published in 2014. Pages 3 – 8.
  140. Jorge M. Giroud, Jeffrey P. Jacobs, Diane E. Spicer, and James D. St. Louis. Chapter 7: Illustrating Terms in Lists of Nomenclature. In: Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 1: Outcomes Analysis. Springer-Verlag London. Pages 1 – 515. ISBN: 978-1-4471-6586-6 (Print). 978-1-4471-6587-3 (Online). Published in 2014. Pages 63 – 74.
  141. Paul R. Barach, Jeffrey P. Jacobs, Peter C. Laussen, and Steven E. Lipshultz. Chapter 1: Introduction. In: Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 2: Quality Improvement and Patient Safety. Springer-Verlag London. 2015, Pages 1 – 456. ISBN: 978-1-4471-6565-1 (Print). 978-1-4471-6566-8 (Online). Published in 2014. Pages 1 – 6.
  142. Paul R. Barach, Jeffrey P. Jacobs, Peter C. Laussen, and Steven E. Lipshultz. Chapter 36: Epilogue –A Vision for the Future. In: Barach P, Jacobs JP, Lipshultz SE, Laussen P. (Eds.). Pediatric and Congenital Cardiac Care - Volume 2: Quality Improvement and Patient Safety. Springer-Verlag London. 2015, Pages 1 – 456. ISBN: 978-1-4471-6565-1 (Print). 978-1-4471-6566-8 (Online). Published in 2014. Pages 441 – 445.
  143. Jacobs JP. Quality Improvement for the Treatment of Patients with Pediatric and Congenital Cardiac Disease: The Role of Clinical Database. In: Sabiston and Spencer Surgery of the Chest, 9th edition. Edited by Drs. Frank W. Sellke, Pedro J. del Nido and Scott J. Swanson. Elsevier Publishing, Waltham, Massachusetts. Published in 2015. Pages 2180 – 2197.
  144. Jacobs JP. Nomenclature, Classification, and Risk Score Assessment of the Adult with Congenital Heart Disease. In: Intensive Care of the Adult with Congenital Heart Disease. Editors: Eduardo da Cruz, Duncan Macrae, Gary Webb. Part of the Series: Congenital Heart Disease in Adolescents and Adults. Series Editors: Massimo Chessa, Helmut Baumgartner, Andreas Eicken, Alessandro Giamberti. Endorsed by The ESC Working Group on Grown-up Congenital Heart Disease and AOEC Adult with Congenital Heart Disease Working Group. Springer International Publishing AG, part of Springer Nature 2019. Springer Nature Switzerland AG. DOI: 10.1007/978-3-319-94171-4. ISBN 978-3-319-94170-7 (hardcover). ISBN 978-3-319-94171-4 (e-book). Series ISSN 2364-6659. Series ISSN 2364-6667 (electronic). Chapter 3. Pages 25 – 59.
  145. Jeffrey P. Jacobs, MD, David M. Overman, MD, James D. St. Louis, MD, Mark S. Bleiweis, Giles J. Peek, Eric Y. Pruitt, MD, Joseph A. Dearani. Outcomes Analysis and Quality Improvement for the Treatment of Patients with Pediatric and Congenital Heart Disease. In: Pediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care, Second Edition. Editors: Eduardo M. da Cruz, Dunbar Ivy, and James Jaggers. For publication in 2021.
  146. Shahian DM, He X, Jacobs JP, et al. Issues in quality measurement: target population, risk adjustment, and ratings. Ann Thorac Surg. 2013;96(2):718-26.  [PMID:23816415]
  147. Shahian DM, Jacobs JP, Edwards FH, et al. The society of thoracic surgeons national database. Heart. 2013;99(20):1494-501.  [PMID:23335498]
Last updated: January 12, 2023