Abstract
This chapter discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of surgical outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives.
In order to perform meaningful multi-institutional analyses of outcomes, any database must incorporate the following seven essential elements: (1) Use of a common language and nomenclature, (2) Use of a database with an established uniform core dataset for collection of information, (3) Incorporation of a mechanism of evaluating case complexity, (4) Availability of a mechanism to assure and verify the completeness and accuracy of the data collected, (5) Collaboration between medical and surgical subspecialties, (6) Standardization of protocols for life-long follow-up (7) Incorporation of strategies for quality assessment and quality improvement.
During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The original working component of this international nomenclature society was The International Working Group for Mapping and Coding of Nomenclatures for Pediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Pediatric and Congenital Cardiac Code (IPCCC), which is available for free download from the internet at [http://www.IPCCC.NET]. This common nomenclature, the International Pediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery (EACTS), The Society of Thoracic Surgeons (STS), and The Japan Congenital Cardiovascular Surgery Database (JCCVSD). As of January 1, 2014, the STS Congenital Heart Surgery Database contains data from 292,828 operations, the EACTS Congenital Heart Surgery Database contains data from over 157,772 operations, and the JCCVSD contains data from over 29,000 operations. Therefore, the combined dataset of the STS Congenital Heart Surgery Database, the EACTS Congenital Heart Surgery Database, and the JCCVSD contains data from over 479,000 operations performed between 1998 and January 1, 2014 inclusive, all coded with the EACTS-STS derived version of the IPCCC, and all coded with identical data specifications.
Three major multi-institutional efforts have attempted to measure the complexity of congenital cardiac surgical operations: Risk Adjustment in Congenital Heart Surgery-1 methodology (RACHS-1 method), Aristotle Basic Complexity Score (ABC Score), and STS-EACTS Congenital Heart Surgery Mortality Categories (STS-EACTS Mortality Categories) (STAT Mortality Categories). RACHS-1 and the ABC Score were developed at a time when limited multi-institutional clinical data were available and were therefore based in a large part on subjective probability (expert opinion). The STAT Mortality Categories are a tool for complexity stratification that was developed from an analysis of 77,294 operations entered into the EACTS Congenital Heart Surgery Database (33,360 operations) and the STS Congenital Heart Surgery Database (43,934 patients) between 2002 and 2007. Procedure-specific mortality rate estimates were calculated using a Bayesian model that adjusted for small denominators. Operations were sorted by increasing risk and grouped into five categories (the STS–EACTS Congenital Heart Surgery Mortality Categories) that were designed to be optimal with respect to minimizing within-category variation and maximizing between-category variation. STS and EACTS have transitioned from the primary use of Aristotle and RACHS-1 to the primary use of the STAT Mortality Categories.
Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between congenital and pediatric cardiac surgeons and other subspecialties, including pediatric cardiac anesthesiologists, via The Congenital Cardiac Anesthesia Society, pediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and pediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology. Analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and noncardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up and quality improvement.
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Introduction
Although significant progress has been made in the care of patients with pediatric and congenital cardiac disease, complications and death still occur. As a result, optimization of outcomes remains a constant goal. Substantial efforts has been devoted to advancing the science of assessing the outcomes and improving the quality of care associated with the treatment of patients with pediatric and congenital cardiac disease [1–227]. The importance of these efforts is supported by the fact that congenital heart defects are the most common birth anomalies, with moderate to severe variants occurring in approximately 6 per 1,000 live births [228].
In order to perform meaningful multi-institutional outcomes analyses and quality improvement, any database must incorporate the following seven essential elements:
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1.
Use of a common language and nomenclature [1–52, 54, 55, 62–64, 66–71, 75, 77, 79, 81, 82, 87, 88, 93, 94, 96, 100, 103, 104, 110–112, 114–116, 128–140, 148, 152, 155, 162, 167–169, 171, 172, 178, 179, 188, 191, 200–202, 209, 210, 213, 216, 218, 221]
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2.
Use of a database with an established uniform core dataset for collection of information [1–23, 55, 58–60, 63, 64, 71, 77, 79–82, 87, 88, 90, 93, 95, 98, 100, 104–106, 110–113, 115, 117–123, 145, 146, 148, 152–155, 161, 163, 164, 171, 172, 174, 178, 179, 185, 188, 189, 204, 207, 210, 212, 214, 216, 220–227]
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3.
Incorporation of a mechanism of evaluating case complexity [56, 57, 61, 65, 72–74, 76–79, 81–84, 88–91, 97–102, 104, 106, 107, 110–112, 124, 125, 141, 142, 147–150, 152, 178, 179, 188, 204, 215–217, 221]
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4.
Availability of a mechanism to assure and verify the completeness and accuracy of the data collected [77, 81, 85, 86, 88, 100, 104, 110–112, 126, 148, 152, 178, 179, 188, 216, 221]
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5.
Collaboration between medical and surgical subspecialties [81, 100, 104, 110–140, 148, 152, 178, 179, 188, 216, 221]
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6.
Standardization of protocols for life-long follow-up [104, 109–112, 127, 145, 146, 152, 164, 173, 178, 179, 184, 188, 189, 214, 216, 221]
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7.
Incorporation of strategies for quality assessment and quality improvement [108, 110, 115, 143–148, 151, 152, 154, 156–160, 165–167, 170, 175–183, 186–188, 190, 192–199, 203, 205, 206, 208, 210, 211, 216, 219, 221, 222]
The foundation of these seven elements is the use of a common language and nomenclature. The remaining six elements are all dependent on this nomenclature; and therefore, quality improvement in the domain of congenital cardiac disease depends on a solid understanding of cardiac morphology and nomenclature.
Events at Bristol, England [229], Denver, Colorado, United States of America [230–236], Winnipeg, Canada [237], Mid Staffordshire, England [238] and Lexington, Kentucky, United States of America [239] have clearly demonstrated the importance of clinically driven analysis of outcomes. For example, the Bristol Report presents the results of the inquiry into the management of the care of children receiving complex cardiac surgical services at the Bristol Royal Infirmary between 1984 and 1995 and relevant related issues. Approximately 200 recommendations are made, many of which relate to the need for accurate multi-institutional outcomes databases to quantitate outcomes of care rendered to patients with congenital cardiac disease. Perhaps less well-known than the Bristol Report, the Report of the Manitoba Pediatric Cardiac Surgery Inquest presents data from an inquest involving 12 children who died while undergoing, or soon after having undergone, cardiac surgery at the Winnipeg Health Sciences Centre in 1994. Clearly, these events demonstrate the importance of a meaningful and fair method of multi-institutional analysis of outcomes for congenital cardiac surgery.
Nomenclature
Substantial effort has been devoted to the standardization of nomenclature and definitions related to surgery for pediatric and congenital cardiac disease. During the 1990s, both The European Association for Cardio-Thoracic Surgery (EACTS) and The Society of Thoracic Surgeons (STS) created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature and a common core minimal dataset were adopted by EACTS and STS and published in the Annals of Thoracic Surgery [21]. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD). By 2005, members of the ISNPCHD crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of the EACTS and STS with the European Paediatric Cardiac Code (EPCC) of the Association for European Paediatric Cardiology (AEPC), and therefore created the International Pediatric and Congenital Cardiac Code (IPCCC) [114], which is available for free download from the internet at [http://www.IPCCC.NET].
Most international databases of patients with pediatric and congenital cardiac disease use the IPCCC as their foundation. Two versions of the IPCCC are used in the overwhelming majority of multi-institutional databases throughout the world:
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1.
The version of the IPCCC derived from the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of the EACTS and the STS
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2.
The version of the IPCCC derived from the nomenclature of the EPCC of the AEPC
These two versions of the IPCCC are also often referred to with the following abbreviated short names:
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1.
EACTS-STS derived version of the IPCCC
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2.
AEPC derived version of the IPCCC
The STS Congenital Heart Surgery Database, the EACTS Congenital Heart Surgery Database, and The Japan Congenital Cardiovascular Surgery Database (JCCVSD) all use the EACTS-STS derived version of the IPCCC.
The ISNPCHD has published review articles which provide a unified and comprehensive classification, with definitions, for several complex congenital cardiac malformations: the functionally univentricular heart [92], hypoplastic left heart syndrome [94], discordant atrioventricular connections [96] and cardiac structures in the setting of heterotaxy [103]. These review articles include definitions and a complete listing of the relevant codes and terms in both versions of the IPCCC.
In collaboration with the World Health Organization (WHO), the ISNPCHD is developing the pediatric and congenital cardiac nomenclature that will be used in the eleventh version of the International Classification of Diseases (ICD-11). With a grant funded by The Children’s Heart Foundation [http://www.childrensheartfoundation.org/], the ISNPCHD has also linked images and videos to the IPCCC. These images and videos are acquired from cardiac morphologic specimens and imaging modalities such as echocardiography, angiography, computerized axial tomography, and magnetic resonance imaging, as well as intraoperative images and videos [162, 191, 200–202, 209, 213, 218]. These images and videos are available for free download from the internet at [http://www.IPCCC-awg.NET]. The IPCCC itself is available for free download from the internet at [http://www.IPCCC.NET].
The EACTS-STS derived version of the IPCCC [110, 112, 114], and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project [208], are now utilized by the STS Congenital Heart Surgery Database, the EACTS Congenital Heart Surgery Database, and the JCCVSD. Between 1998 and January 1, 2014 inclusive, this nomenclature and database was used by STS, EACTS, and JCCVSD to analyze outcomes of 479,000 operations.
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 recent investigations suggests that the validity of coding of lesions seen in the congenitally malformed heart via 9th ICD Revision of the International Classification of Diseases (ICD-9) as used currently in administrative databases in the United States of America is poor [116, 210, 240, 241]. 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 [240]. 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 [241]. 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 [116]. 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 [210]. 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.
Several potential reasons can explain the poor diagnostic accuracy of administrative databases and codes from ICD-9:
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Accidental miscoding
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Coding performed by medical records clerks who have never seen the actual patient
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Contradictory or poorly described information in the medical record
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Lack of diagnostic specificity for congenital cardiac disease in the codes of ICD-9
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Inadequately trained medical coders.
Although one might anticipate some improvement in diagnostic specificity with the planned adoption of ICD-10 by the United States, it is likely to still be far short from that currently achieved with 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.
Database
The STS Congenital Heart Surgery Database is the largest database in North America dealing with congenital cardiac malformations [117, 152]. It has grown annually since its inception, both in terms of the number of participating centers submitting data, and the number of operations analyzed (Figs. 8.1, 8.2 and 8.3). As of January 1, 2014, the STS Congenital Heart Surgery Database currently has 111 Participating Centers representing 120 hospitals performing pediatric and congenital cardiac surgery in North America: 117 out of an estimated 125 centers from the United States of America that perform pediatric and congenital heart surgery and 3 out of centers 8 from Canada that perform pediatric and congenital heart surgery [95, 174]. (The Report of the 2005 STS Congenital Heart Surgery Practice and Manpower Survey, undertaken by the STS Workforce on Congenital Heart Surgery, documented that 122 centers in the United States of America perform pediatric and congenital heart surgery and 8 centers in Canada perform pediatric and congenital heart surgery [95]. The Report of the 2010 STS Congenital Heart Surgery Practice and Manpower Survey, undertaken by the STS Workforce on Congenital Heart Surgery, documented that 125 centers in the United States of America perform pediatric and congenital heart surgery and 8 centers in Canada perform pediatric and congenital heart surgery [174].)
The STS Congenital Heart Surgery Database therefore contains data from an estimated 93.6 % of hospitals (117 out of 125) performing pediatric cardiac surgery in the United States. With penetrance of over 90 %, the data in the STS Congenital Heart Surgery Database is representative of pediatric and congenital heart surgery in the United States of America. As of January 1, 2014, the number of cumulative total operations in the STS Congenital Heart Surgery Database is 292,828 [19]. The aggregate Participant Feedback Report from the Fall 2013 Harvest of the STS Congenital Heart Surgery Database includes 136,617 operations performed in the 4 year analytic window of July 1, 2009 to June 30, 2013, inclusive, submitted from 120 hospitals in North America, 117 in the United States of America and 3 in Canada. In collaboration with EACTS, the STS has developed standardized methodology for tracking mortality and morbidity associated with the treatment of patients with congenital and pediatric cardiac disease [93, 105].
The EACTS Congenital Heart Surgery Database is the largest database in Europe dealing with congenital cardiac malformations (Fig. 8.4) [112, 117]. As of May 2013, the EACTS Congenital Heart Surgery Database contained 157,772 operations performed in 130,534 patients. As of May, 2013, the EACTS Congenital Heart Surgery Database had 348 Centers from 76 countries registered, with 173 active Centers from 46 countries submitting data.
The JCCVSD has recently been operationalized based on identical nomenclature and database standards as that used by EACTS and STS [117]. The JCCVSD began enrolling patients in 2008. By December 2011, over 100 hospitals were submitting data, and by April 2013, over 29,000 operations were entered into the JCCVSD, in just under 5 years of data collection (Fig. 8.5). In Japan, it is mandatory for specialists to enroll in this benchmarking project in order to objectively examine their own performance and make efforts for continuous improvement. In the future, certification in Japan is to be performed solely on the basis of empirical data registered by the project. The developers of the JCCVSD hope to collaborate with their colleagues across Asia to create an Asian Congenital Heart Surgery Database.
In the United Kingdom, the United Kingdom Central Cardiac Audit Database (UKCCAD) uses the AEPC derived version of the IPCCC as the basis for its national, comprehensive, validated, and benchmark-driven audit of all pediatric surgical and transcatheter procedures undertaken since 2000 [152]. All 13 tertiary centers in the United Kingdom performing cardiac surgery or therapeutic cardiac catheterization in children with congenital cardiac disease submit data to the UKCCAD. Data about mortality is obtained from both results volunteered from the hospital databases, and by independently validated records of deaths obtained by the Office for National Statistics, using the patient’s unique National Health Service number, or the general register offices of Scotland and Northern Ireland. Efforts are underway to link the UKCCAD to The EACTS Congenital Heart Surgery Database. Linkage of the UKCCAD to The EACTS Congenital Heart Surgery Database will require use of the crossmap of the AEPC derived version of the IPCCC (used by the UKCCAD) to the EACTS-STS derived version of the IPCCC (used by the EACTS, STS, and JCCVSD).
As of January 1, 2014, the STS Congenital Heart Surgery Database contains data from 292,828 operations, the EACTS Congenital Heart Surgery Database contains data from over 157,772 operations, and the JCCVSD contains data from over 29,000 operations. Therefore, the combined dataset of the STS Congenital Heart Surgery Database, the EACTS Congenital Heart Surgery Database, and the JCCVSD, contains data from over 479,000 operations, all coded with the EACTS-STS derived version of the IPCCC [100, 110, 112, 114], and all coded with identical data specifications [208].
Complexity Stratification
The importance of measurement of complexity derives from the fact that analysis of outcomes using raw measurements of mortality, without adjustment for complexity, is inadequate. The mix of cases can vary greatly from program to program. Without stratification of complexity, the analysis of outcomes will be flawed [56, 61, 73, 74, 76, 82, 106, 149, 150].
The analysis of outcomes after surgery requires a reliable method of estimating the risk of adverse events. However, formal risk modeling is challenging for rare operations. Complexity stratification provides an alternative methodology that can facilitate the analysis of outcomes of rare operations. Complexity stratification is a method of analysis in which the data are divided into relatively homogeneous groups (called strata). The data are analyzed within each stratum.
Three major multi-institutional efforts have attempted to measure the complexity of congenital cardiac surgical operations:
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1.
Risk Adjustment in Congenital Heart Surgery-1 methodology (RACHS-1 method) [56, 73, 149]
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2.
Aristotle Basic Complexity Score (ABC Score) [61, 74, 76, 82, 106, 149]
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3.
STS-EACTS Congenital Heart Surgery Mortality Categories (STS-EACTS Mortality Categories) (STAT Mortality Categories) [150].
RACHS-1 and the ABC Score were developed at a time when limited multi-institutional clinical data were available and were therefore based in a large part on subjective probability (expert opinion). The STAT Mortality Categories are a tool for complexity stratification that was developed from an analysis of 77,294 operations entered into the EACTS Congenital Heart Surgery Database (33,360 operations) and the STS Congenital Heart Surgery Database (43,934 patients) between 2002 and 2007. Procedure-specific mortality rate estimates were calculated using a Bayesian model that adjusted for small denominators. Operations were sorted by increasing risk and grouped into five categories (the STS–EACTS Congenital Heart Surgery Mortality Categories) that were designed to be optimal with respect to minimizing within-category variation and maximizing between-category variation.
Table 8.1 compares RACHS-1, the ABC Score, and the STS-EACTS Mortality Categories. Table 8.2 shows the application in the STS Congenital Heart Surgery Database of the STAT Congenital Heart Surgery Mortality Categories [198]. STS and EACTS have transitioned from the primary use of Aristotle and RACHS-1 to the primary use of the STAT Mortality Categories because of three reasons:
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1.
STAT Score was developed primarily based on objective data while RACHS-1 and Aristotle were developed primarily on expert opinion (Subjective probability)
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2.
STAT Score allows for classification of more operations than RACHS-1 or Aristotle
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3.
STAT Score has a higher c-statistic than RACHS-1 or Aristotle.
Meaningful evaluation and comparison of outcomes require consideration of both mortality and morbidity, but the latter is much harder to measure. The STAT Mortality Categories provide an empirically based tool for analyzing mortality associated with operations for congenital heart disease [150]. STS has developed the STAT Morbidity Categories [215] based on major postoperative complications and postoperative length of stay. Both major postoperative complications and postoperative length of stay were used because models that assume a perfect one to one relationship between postoperative complications and postoperative length of stay are not likely to fit the data well. Incorporation of both major postoperative complications and postoperative length of stay allows creation of a much more informative model. The STAT Morbidity Categories provide an empirically based tool for analyzing morbidity associated with operations for congenital heart disease [215].
Data Verification
Collaborative efforts involving EACTS and STS aim to enhance mechanisms to verify the completeness and accuracy of the data in the databases [21, 126]. A combination of three strategies may ultimately be required to allow for optimal verification of data:
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1.
Intrinsic data verification (designed to rectify inconsistencies of data and missing elements of data)
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2.
Site visits with “Source Data Verification” (in other words, verification of the data at the primary source of the data)
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3.
External verification of the data from independent databases or registries (such as governmental death registries)
Data quality in the STS Congenital Heart Surgery Database is evaluated through intrinsic data verification by Duke Clinical Research Institute (DCRI) (including identification and correction of missing/out of range values and inconsistencies across fields). DCRI is the data warehouse and analytic center of the STS Congenital Heart Surgery Database.
In addition to intrinsic data verification by DCRI, each year, approximately 10 % of participants are randomly selected for audits of their center, in accordance with their STS Congenital Heart Surgery Database Participation Agreement. The audit is designed to complement the internal quality controls, with an overall objective of maximizing the integrity of the data in the STS Congenital Heart Surgery Database by examining the accuracy, consistency, and completeness of the data. STS has selected Telligen to perform an independent, external audit of the STS Congenital Heart Surgery Database. As the state of Iowa’s Medicare Quality Improvement Organization (QIO), Telligen partners with health care professionals to assure high quality, cost effective health care. As a Quality Improvement Organization, Telligen is compliant with the Health Insurance Portability and Accountability Act of 1996 of the United States of America (HIPAA) and performs audits adhering to strict security policies. Additionally, an STS congenital heart surgeon volunteer leader participates in the audit.
In the STS Congenital Heart Surgery Database, the audit process includes:
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Completion of the STS Data Collection Questionnaire and review of responses with the primary data contact, data manager, and/or other relevant personnel
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Review of the data collection process and documentation to determine case eligibility for submittal to the STS Congenital Heart Surgery Database
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Comparison of facility operative case logs with cases submitted to the STS Congenital Heart Surgery Database
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Data abstraction (from original source documents) of congenital heart surgery records randomly selected by DCRI and all operative mortality cases for the preceding calendar year.
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A summary conference with the surgeon representative, primary data contact, data manager, and/or other relevant personnel to discuss general trends in data collection and submission processes.
In 2013, the audit of the STS Congenital Heart Surgery Database included the following documentation of rates of completeness and accuracy for the specified fields of data:
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Primary Diagnosis (Completeness = 100 %, Accuracy = 96.2 %),
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Primary Procedure (Completeness = 100 %, Accuracy = 98.7 %),
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Mortality Status at Hospital Discharge (Completeness = 100 %, Accuracy = 98.8 %)
In 2014, 11 Participants in the STS Congenital Heart Surgery Database will be audited.
Subspecialty Collaboration
Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease [110–112], further collaborative efforts are ongoing between congenital and pediatric cardiac surgeons and other subspecialties, including
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1.
Pediatric cardiac anesthesiologists, via The Congenital Cardiac Anesthesia Society [105, 119, 139, 207],
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2.
Pediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society [190], and
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3.
Pediatric cardiologists, via the Joint Council on Congenital Heart Disease, the American College of Cardiology, and The Association for European Paediatric Cardiology [118].
Strategies have been developed to link together databases [109, 164, 189, 193, 194, 210, 219]. By linking together different databases, one can capitalize on the strengths and mitigate some of the weaknesses of these databases and therefore allow analyses not possible with either dataset alone. Linked databases have facilitated both comparative effectiveness research [193, 194, 219] and longitudinal follow-up [145, 146, 173, 214]. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease [110–112], further collaborative efforts are ongoing between congenital and pediatric cardiac surgeons and other subspecialties.
The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease has held ten annual meetings, each lasting 1 or 2 days, in 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, and 2014. The 11th Multi-Societal Meeting has already been scheduled for 2015 in Prague, the Czech Republic:
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1.
The First Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Chicago, Illinois, Chicago Hilton, Thursday August 25, 2005 and Friday August 26, 2005. (At the inception of this first meeting, the meeting was named the “VPS/STS/PCICS Combined Database Meeting”. VPS=The Virtual Pediatric Intensive Care Unit Systems, STS=The Society of Thoracic Surgeons, PCICS=The Pediatric Cardiac Intensive Care Society.)
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2.
The Second Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Chicago, Illinois, Thursday August 17, 2006 and Friday, August 18, 2006.
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3.
The Third Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Hotel George in Washington, DC, Thursday September 27, 2007 and Friday, September 28, 2007.
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The Fourth Annual Meeting of The Multi- Societal Database Committee for Pediatric and Congenital Heart Disease. Omni Mount-Royal Hotel, Montreal, Canada, Saturday October 4, 2008 and Sunday October 5, 2008.
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5.
The Fifth Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease of The Global Organization for Pediatric and Congenital Heart Disease: “The Transition from Outcomes Analysis to Quality Improvement”. The Emory Conference Center, Atlanta, Georgia, Wednesday September 16, 2009 and Thursday, September 17, 2009.
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6.
The Sixth Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease of The Global Organization for Pediatric and Congenital Heart Disease: “Creating a Multidisciplinary Strategy for Improving the Quality of HealthCare Delivered to Patients with Pediatric and Congenital Heart Disease”. The Emory Conference Center, Atlanta, Georgia, Thursday, August 26, 2010 and Friday, August 27, 2010.
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7.
The Seventh Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease: “The relationship between (1) Outcomes Analysis, (2) Quality Improvement, and (3) Patient Safety”. University of Cambridge, Cambridge, United Kingdom, Tuesday, September 20, 2011 and Wednesday, September 21, 2011.
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8.
The Eighth Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease: “New Initiatives in Outcomes and Quality”. Chair: Jeffrey P. Jacobs, MD, Local Hosts: Robert Campbell, MD and Robert Vincent, MD. The Emory Conference Center, Atlanta, Georgia (404) 712–6000. Thursday, August 23, 2012 and Friday, August 24, 2012.
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9.
The Ninth Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease: “Bridging the Gap from Outcomes to Quality”. Chair: Jeffrey P. Jacobs, Local Host: Shakeel Qureshi, President, The Association for European Paediatric and Congenital Cardiology, Meeting held at the 47th Annual Meeting of The Association for European Paediatric and Congenital Cardiology (AEPC), London, England, United Kingdom, Thursday, May 23, 2013.
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10.
The Tenth Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease: “Dashboards for Pediatric and Congenital Cardiac Care”. Chair: Jeffrey P. Jacobs, MD, Local Hosts: Robert Campbell, MD and Robert Vincent, MD. The Emory Conference Center, Atlanta, Georgia (404) 712–6000. Thursday, September 4, 2014 and Friday, September 5, 2014.
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11.
The Eleventh Annual Meeting of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease: “Improving the quality of congenital cardiology healthcare by harmonizing international databases”. Chair: Jeffrey P. Jacobs, MD, Robert Vincent, MD, and Rodney Franklin, MD. Meeting held at the 49th Annual Meeting of The Association for European Paediatric and Congenital Cardiology (AEPC), Prague, the Czech Republic, Wednesday, May 20, 2015.
The various organizations and Societies whose members have participated in the meetings and activities of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease as well as the various participants themselves have previously been published [111], although the group continues to grow and involve multiple professional medical and nursing societies as well as multiple governmental and nongovernmental agencies. Some notable accomplishments of this multidisciplinary group are worth brief mention. At the first meeting of the Multi-Societal Database Committee, initial discussions took place about the possibility of linking together the various databases of the subspecialties of pediatric cardiac surgery, pediatric cardiology, pediatric cardiac anesthesia, and pediatric critical care. The Multi-Societal Database Committee rapidly realized that it would be essential to collaborate in multiple areas:
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1.
Use of a common language and nomenclature
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2.
Use of a database with an established uniform core dataset for collection of information
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3.
Incorporation of a mechanism of evaluating case complexity
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4.
Availability of a mechanism to assure verification of the completeness and accuracy of the data collected
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5.
Collaboration between medical and surgical subspecialties,
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Standardization of protocols for life-long longitudinal follow-up.
Each of these six areas is discussed in detail in the following 530 page Supplement published in Cardiology in the Young by the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease [110]. Initial discussions of the Multi-Societal Database Committee identified that it was essential for the various subspecialty databases to use identical nomenclature in order to allow them to communicate with each other with meaning. Various lists of terminology would need to be harmonized:
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Diagnoses
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Procedures
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3.
Complications
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4.
Preoperative Factors
The Multi-Societal Database Committee agreed to use The International Pediatric and Congenital Cardiac Code (IPCCC) (http://www.ipccc.net/) as the basis of communication. Mature and well developed Short Lists and Long Lists of Diagnoses and Procedures are available via The International Pediatric and Congenital Cardiac Code, and these diagnostic and procedural lists have been incorporated into the various subspecialty databases and harmonized.
At the second meeting of The Multi-Societal Database Committee, the diagnostic and procedural lists of nomenclature were harmonized across the multiple databases of pediatric cardiac surgery, pediatric cardiology, pediatric cardiac anesthesia, and pediatric critical care. These harmonized lists were based on the IPCCC. Because the diagnostic and procedural lists in The International Pediatric and Congenital Cardiac Code are matured and functional, the Multi-Societal Database Committee adopted these lists and harmonized them across their databases. The Multi-Societal Database Committee then elected to focus on developing a mature list of Complications and defining these complications [110–140].
At the third and fourth meeting of The Multi-Societal Database Committee, the topic of complications associated with the treatment of patients with pediatric and congenital cardiac disease was discussed in detail. The Multi-Societal Database Committee ultimately developed and published a Long List of Complications [110, 140] and a Short List of Complications [110–112], with consensus-based definitions provided in each List:
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The Long List of Complications contains and defines 2,836 terms and is named: “The Long List of Complications of The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease”, with the abbreviated short name: “Multi-Societal Long List of Complications”. Although the act of navigating a list with 2,836 terms can initially seem quite daunting, it can become quite simple and enjoyable with the aid of computerized navigation tools designed to support the hierarchal structure of the list.
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The Short List of Complications contains and defines 56 terms.
At the fifth meeting of The Multi-Societal Database Committee, the Committee transitioned from collaborative efforts related to databases to collaborative initiatives related to quality improvement. The sixth meeting of The Multi-Societal Database Committee focused on “Creating a Multidisciplinary Strategy for Improving the Quality of HealthCare Delivered to Patients with Pediatric and Congenital Heart Disease”. The first and second meetings were organized and hosted by the VPS Database, and the National Association of Children’s Hospitals and Related Institutions (NACHRI). The third and fourth meetings were organized and hosted by the Society of Thoracic Surgeons (STS), and the fifth, sixth, eighth, and tenth meetings were organized and hosted by Emory University. The seventh meeting was hosted the Pediatric Cardiac Intensive Care Society. The ninth meeting was hosted by The Association for European Paediatric and Congenital Cardiology (AEPC), and the AEPC will host the eleventh meeting. The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease is a platform that facilitates the ability for databases in the domain of pediatric cardiac care to span conventional subspecialty and temporal boundaries.
Longitudinal Follow-Up
The transformation of the STS Database to a platform for longitudinal follow-up will ultimately result in higher quality of care for all cardiothoracic surgical patients by facilitating longitudinal comparative effectiveness research on a national level [127, 173, 184, 214]. Several potential strategies will allow longitudinal follow-up with the STS Database, including the development of clinical longitudinal follow-up modules within the STS Database itself, and linking the STS Database to other clinical registries, administrative databases, and national death registries:
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Using probabilistic matching with shared indirect identifiers, the STS Database can be linked to administrative claims databases (such as the CMS Medicare Database [145, 146] and the Pediatric Health Information System (PHIS) database [109, 164, 189, 193, 194, 210, 219]) and become a valuable source of information about long-term mortality, rates of re-hospitalization, long-term morbidity, and cost [208].
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Using deterministic matching with shared unique direct identifiers, the STS Database can be linked to national death registries like the Social Security Death Master File (SSDMF) and the National Death Index (NDI) in order to verify life-status over time [127, 173, 184, 214].
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Through either probabilistic matching or deterministic matching [184], the STS Database can link to multiple other clinical registries, such as the National Cardiovascular Data Registry (NCDR) of the American College of Cardiology (ACC), in order to provide enhanced clinical follow-up.
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The STS Database can develop clinical longitudinal follow-up modules of its own to provide detailed clinical follow-up [109, 127, 173, 184, 214].
Quality Assessment and Quality Improvement
The STS Database is increasingly used to document variation in outcomes [182, 198] and measure quality [179, 186]. Funnel plots may be used to demonstrate this variation in outcome and to facilitate the identification of centers that are outliers in performance (Fig. 8.6). Quality improvement initiatives can be initiated in “low performing centers” and best practices can be obtained from “high performing centers”.
STS has collaborated with the Congenital Heart Surgeons’ Society (CHSS) to develop and endorse metrics to assess the quality of care delivered to patients with pediatric and congenital cardiac disease [186]. Tables 8.3, 8.4, and 8.5 presents 21 “Quality Measures for Congenital and Pediatric Cardiac Surgery” that were developed and approved by the Society of Thoracic Surgeons (STS) and endorsed by the Congenital Heart Surgeons’ Society (CHSS). These Quality Measures are organized according to Donabedian’s Triad of Structure, Process, and Outcome [242]. It is hoped that these quality measures can aid in congenital and pediatric cardiac surgical quality assessment and quality improvement initiatives. These initiatives will take on added importance as the public reporting of cardiac surgery performance becomes more common [143, 176, 177].
Summary: Bridging the Gap Form Analysis of Outcomes to Improvement of Quality
Clinical registries represent a foundational tool in the following inter-related process:
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Measuring the outcomes of medical and surgical practices,
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Developing evidence for best medical and surgical practices,
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Providing actionable feedback to clinicians, and
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Improving the quality of care and outcomes.
Clinical registries are the best tool for measuring the outcomes of the processes of care [220, 221]. As described in this chapter, the ability to measure clinical outcomes properly requires using standardized clinical nomenclature, uniform standards for defining elements of data and collecting these data, strategies to adjust for the complexity of patients, techniques to verify the completeness and accuracy of data, and collaboration across medical and surgical subspecialties. All of these elements exist in the ideal clinical registry.
Clinical registries can be used as a platform for developing evidence for best medical practices and performing comparative effectiveness research. The NIH-funded linkage of the STS Congenital Heart Surgery Database to the Pediatric Health Information System (PHIS) Database exemplifies this approach [164, 189, 193, 194, 210, 219]. This linkage of clinical and administrative data facilitated comparative effectiveness research in the domains of perioperative methylprednisolone and outcome in neonates undergoing heart surgery [193] and antifibrinolytic medications in pediatric heart surgery [194]. Similarly, The NIH-funded ASCERT trial (American College of Cardiology Foundation—Society of Thoracic Surgeons Collaboration on the Comparative Effectiveness of Revascularization sTrategies trial) also used linked clinical and administrative data to compare surgical and transcatheter strategies of coronary revascularization [243, 244]. Although randomized trials have been considered by many to be the gold standard of comparative effectiveness research, recent efforts have examined the possibility of using a clinical registry as a platform for randomized trials [245, 246], potentially accomplishing the dual objectives of decreasing the cost of the trial and increasing the generalizability of the patients enrolled.
Clinical registries can provide actionable feedback to clinicians and therefore aid in initiatives to improve quality. Clinical registries can provide practitioners with accurate and timely feedback of their own outcomes and can benchmark these outcomes to regional, national, or even international aggregate data [182, 198, 247–249].
The ultimate goal of clinical registries is to improve quality of care and outcomes. Clinical registries have been used to create standardized measures of quality that have been endorsed by multiple professional medical societies and the National Quality Forum [186, 250]. Compliance with these measures and the public reporting of these measures should lead to improvements in the overall quality of care delivered to our patients [143, 176, 177].
Figure 8.7 is a Venn Diagram that demonstrates the close and overlapping relationships between the three domains of this textbook: Outcomes Analysis, Quality Improvement, and Patient Safety. These relationships compose the underlying theme of this textbook and are fundamental to improving the state of the art of pediatric and congenital cardiac care.
References
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Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI. Executive summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – seventeenth harvest – (July 1, 2008–June 30, 2012). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham; Fall 2012 Harvest.
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Rocchini AP. Congenital Heart Surgery Nomenclature and Database Project: therapeutic cardiac catheter interventions. In: Mavroudis C, Jacobs JP, editors. The Annals of Thoracic Surgery April 2000 Supplement: The International Congenital Heart Surgery Nomenclature and Database Project. The Annals of Thoracic Surgery, April 2000, Supplement, S332–42.
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Gaynor JW, Jacobs JP, Jacobs ML, Elliott MJ, Lacour-Gayet F, Tchervenkov CI, Maruszewski B, Mavroudis C. Congenital Heart Surgery Nomenclature and Database Project: update and proposed data harvest. For simultaneous publication: The Annals of Thoracic Surgery 2002, The European Journal of Cardio-thoracic Surgery 2002, and The Jpn J Thorac Cardiovasc Surg 2002. The Annals of Thoracic Surgery, 73(3):1016–8, March 2002.
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Franklin RCG, Jacobs JP, Tchervenkov CI, Béland M. European Paediatric Cardiac Code Short List crossmapped to STS/EACTS Short List with ICD-9 & ICD-10 crossmapping. Cardiol Young. 2002;(Suppl II):23–49.
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Béland M, Jacobs JP, Tchervenkov CI, Franklin RCG. The International Nomenclature Project for Paediatric and Congenital Heart Disease: report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young. 2002;12:425–30.
Franklin RCG, Jacobs JP, Tchervenkov CI, Béland M. The International Nomenclature Project for Pediatric and Congenital Heart Disease: bidirectional crossmap of the short lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. Cardiol Young. 2002;12:431–5.
Kurosawa H, Gaynor JW, Jacobs JP, Jacobs ML, Elliott MJ, Lacour-Gayet F, Tchervenkov CI, Maruszewski B, Mavroudis C. Congenital Heart Surgery Nomenclature and Database Project: update and proposed data harvest. For simultaneous publication: The Annals of Thoracic Surgery 2002, The European Journal of Cardio-thoracic Surgery 2002, and The Jpn J Thorac Cardiovasc Surg 2002. The Jpn J Thorac Cardiovasc Surg, 50(11):498–501, November 2002.
Allen SW, Gauvreau K, Bloom BT, Jenkins KJ. Evidence-based referral results in significantly reduced mortality after congenital heart surgery. Pediatrics. 2003;112(1 Pt 1):24–8.
Jenkins KJ. Risk adjustment for congenital heart surgery: the RACHS-1 method. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2004;7:180–4.
Lacour-Gayet FG, Clarke D, Jacobs JP, Gaynor JW, Hamilton L, Jacobs ML, Maruszewski B, Pozzi M, Spray T, Tchervenkov CI, Mavroudis C, Aristotle Committee. The Aristotle score for congenital heart surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2004;7:185–91.
Béland MJ, Franklin RCG, Jacobs JP, Tchervenkov CI, Aiello VD, Colan SD, Gaynor JW, Krogmann ON, Kurosawa H, Maruszewski B, Stellin G, Weinberg PM. Update from The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young. 2004;14(2):225–9.
Lacour-Gayet FG, Clarke D, Jacobs JP, Comas J, Daebritz S, Daenen W, Gaynor JW, Hamilton L, Jacobs ML, Maruszewski B, Pozzi M, Spray T, Stellin G, Tchervenkov CI, Mavroudis C, Aristotle Committee. The Aristotle score: a complexity-adjusted method to evaluate surgical results. Eur J Cardiothorac Surg. 2004;25(6):911–24.
Jacobs JP, Mavroudis C, Jacobs ML, Lacour-Gayet FG, Tchervenkov CI, Gaynor JW, Clarke DR, Spray TL, Maruszewski B, Stellin G, Elliott MJ, Dokholyan RS, Peterson ED. Lessons learned from the data analysis of the second harvest (1998–2001) of The Society of Thoracic Surgeons (STS) congenital heart surgery database. Eur J Cardiothorac Surg. 2004;26(1):18–37.
Boethig D, Jenkins KJ, Hecker H, Thies WR, Breymann T. The RACHS-1 risk categories reflect mortality and length of hospital stay in a large German pediatric cardiac surgery population. Eur J Cardiothorac Surg. 2004;26:12–7.
Welke KF, Jacobs JP, Jenkins KJ. Evaluation of quality of care for congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2005;8:157–67.
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: Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH, editors. 2005 Supplement to Cardiology in the Young: Controversies of the Ventriculo-Arterial Junctions and Other Topics. Cardiology in the Young, vol. 15, Supplement 1:184–9, February 2005.
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: Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH, editors. 2005 Supplement to Cardiology in the Young: Controversies of the Ventriculo-Arterial Junctions and Other Topics. Cardiology in the Young, vol. 15, Supplement 1:190–8, February 2005.
Jacobs JP, Lacour-Gayet FG, Jacobs ML, Clarke DR, Tchervenkov CI, Gaynor JW, Spray TL, Maruszewski B, Stellin G, Gould J, Dokholyan RS, Peterson ED, Elliott MJ, Mavroudis C. Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. Ann Thorac Surg. 2005;79(5):1635–49; discussion 1635–49.
Lacour-Gayet F, Clarke DR, Aristotle Committee. The Aristotle method: a new concept to evaluate quality of care based on complexity. Curr Opin Pediatr. 2005;17(3):412–7.
Lacour-Gayet F, Jacobs JP, Clarke DR, Gaynor JW, Jacobs ML, Anderson RH, Elliott MJ, Maruszewski B, Vouhe P, Mavroudis C. Performance of surgery for congenital heart disease: shall we wait a generation or look for different statistics? J Thorac Cardiovasc Surg. 2005;130(1):234–5.
Maruszewski B, Lacour-Gayet F, Monro JL, Keogh BE, Tobota Z, Kansy A. An attempt at data verification in the EACTS congenital database. Eur J Cardiothorac Surg. 2005;28(3):400–4; discussion 405–6.
Jacobs ML. Editorial comment. Eur J Cardiothorac Surg. 2005;28(3):405–6.
Jacobs JP, Maruszewski B, The European Association for Cardio-Thoracic Surgery (EACTS) and The Society of Thoracic Surgeons (STS) Joint Congenital Heart Surgery Nomenclature and Database Committee. Computerized outcomes analysis for congenital heart disease. Curr Opin Pediatr. 2005;17(5):586–91.
Jacobs JP, Jacobs ML, Maruszewski B, Lacour-Gayet FG, Clarke DR, Tchervenkov CI, Gaynor JW, Spray TL, Stellin G, Elliott MJ, Ebels T, Mavroudis C. 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.
Larsen SH, Pedersen J, Jacobsen J, Johnson SP, Hansen OK, Hjortdal V. The RACHS-1 risk categories reflect mortality and length of stay in a Danish population of children operated for congenital heart disease. Eur J Cardiothorac Surg. 2005;28:877–81.
Miyamoto T, Sinzobahamvya N, Kumpikaite D, et al. Repair of truncus arteriosus and aortic arch interruption: outcome analysis. Ann Thorac Surg. 2005;79:2077–82.
Maruszewski B, Tobota Z, Kansy A, Lacour-Gayet F, Jacobs JP, Clark D, Elliott MJ. The Aristotle score methodology for evaluation of outcomes in congenital heart surgery. Standardy Med Pediatr. 2005;7 Suppl 22:29–33.
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: Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH, editors. 2006 Supplement to Cardiology in the Young: Controversies and Challenges in the Management of the Functionally Univentricular Heart. Cardiology in the Young, vol. 16, Supplement 1:9–21, February 2006.
Jacobs JP, Mavroudis C, Jacobs ML, Maruszewski B, Tchervenkov CI, Lacour-Gayet FG, Clarke DR, Yeh T, Walters 3rd HL, Kurosawa H, Stellin G, Ebels T, Elliott MJ. What is operative mortality? Defining death in a surgical registry database: a report from the STS congenital database task force and the joint EACTS-STS congenital database committee. Ann Thorac Surg. 2006;81(5):1937–41.
Tchervenkov CI, Jacobs JP, Weinberg PM, Aiello VD, Béland MJ, Colan SD, Elliott MJ, Franklin RC, Gaynor JW, Krogmann ON, Kurosawa H, Maruszewski B, Stellin G. The nomenclature, definition and classification of hypoplastic left heart syndrome. Cardiol Young. 2006;16(4):339–68.
Jacobs ML, Mavroudis C, Jacobs JP, Tchervenkov CI, Pelletier GJ. Report of the 2005 STS Congenital Heart Surgery Practice and Manpower survey: a report from the STS work force on congenital heart surgery. Ann Thorac Surg. 2006;82(3):1152–8, 1159.e1–5; discussion 1158–9.
Jacobs JP, Franklin RCG, Wilkinson JL, Cochrane AD, Karl TR, Aiello VD, Béland MJ, Colan SD, Elliott, MJ, Gaynor JW, Krogmann ON, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Weinberg PM. The nomenclature, definition and classification of discordant atrioventricular connections. In: Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH, editors. 2006 Supplement to Cardiology in the Young: Controversies and Challenges of the Atrioventricular Junctions and Other Challenges Facing Paediatric Cardiovascular Practitioners and their Patients. Cardiology in the Young, vol. 16 (Supplement 3):72–84, September 2006.
Sinzobahamvya N, Photiadis J, Kumpikaite D, et al. Comprehensive Aristotle score: implications for the Norwood procedure. Ann Thorac Surg. 2006;81:1794–800.
Atrip JH, Campbell DN, Ivy DD, et al. Birth weight and complexity are significant factors for the management of hypoplastic left heart syndrome. Ann Thorac Surg. 2006;82:1252–7; discussion 1258–9.
Al-Radi OO, Harrell Jr FE, Caldarone CA, McCrindle BW, Jacobs JP, Williams MG, Van Arsdell GS, Williams WG. Case complexity scores in congenital heart surgery: a comparative study of the Aristotle basic complexity score and the Risk Adjustment in Congenital Heart Surgery (RACHS-1) system. J Thorac Cardiovasc Surg. 2007;133(4):865–75. Epub 2007.
Jacobs JP, Mavroudis C, Jacobs ML, Maruszewski B, Tchervenkov CI, Lacour-Gayet FG, Clarke DR, Gaynor JW, Spray TL, Kurosawa H, Stellin G, Ebels T, Bacha EA, Walters HL, Elliott MJ. Nomenclature and databases – the past, the present, and the future: a primer for the congenital heart surgeon. Pediatr Cardiol. 2007;28(2):105–15. Epub 2007.
Lacour-Gayet F, Jacobs ML, Jacobs JP, Mavroudis C. The need for an objective evaluation of morbidity in congenital heart surgery. Ann Thorac Surg. 2007;84(1):1–2.
Lacour-Gayet FG, Jacobs JP, Clarke DR, Maruszewski B, Jacobs ML, O’Brien SM, Mavroudis C. Evaluation of quality of care in congenital heart surgery: contribution of the Aristotle complexity score. Adv Pediatr. 2007;54:67–83. PMID: 17918467, 2007.
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: Anderson RH, Jacobs JP, Wernovsky G, editors. 2007 Supplement to Cardiology in the Young: Controversies and Challenges Facing Paediatric Cardiovascular Practitioners and their Patients. Cardiology in the Young, vol. 17, Supplement 2, p. 1–28, doi:10.1017/S1047951107001138, September 2007.
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. doi:10.1017/S1047951107001278.
Jacobs JP, Jacobs ML, Mavroudis C, Maruszewski B, Tchervenkov CI, Lacour-Gayet FG, Clarke DR, Yeh T, Walters 3rd HL, 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. Ann Thorac Surg. 2007;84:1416–21.
O’Brien SM, Jacobs JP, Clarke DR, Maruszewski B, Jacobs ML, Walters III HL, Tchervenkov CI, Welke KF, Tobota Z, Stellin G, Mavroudis C, Lacour-Gayet FG. Accuracy of the Aristotle basic complexity score for classifying the mortality and morbidity potential of congenital heart surgery procedures. Ann Thorac Surg. 2007;84(6):2027–37. PMID: 18036930.
Derby CD, Kolcz J, Kerins PJ, Duncan DR, Quezada E, Pizarro C. Aristotle score predicts outcome in patients requiring extracorporeal circulatory support following repair of congenital heart disease. ASAIO J. 2007;53:82–6.
Curzon CL, Milford-Beland S, Li JS, O’Brien SM, Jacobs JP, Jacobs ML, Welke KF, Lodge AJ, Peterson ED, Jaggers J. Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database. J Thorac Cardiovasc Surg. 2008;135(3):546–51. Epub 2008.
Jacobs JP, Haan CK, Edwards FH, Anderson RP, Grover FL, Mayer JE Jr, Chitwood WR Jr. Editorial for Ann Thorac Surg: the rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS database. Ann Thorac Surg. 2008;86(3):695–8. doi:10.1016/j.athoracsur.2008.04.075.
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, vol. 18, Supplement S2, p. 1–530, December 9, 2008.
Jacobs JP. Introduction – Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. In: JP Jacobs, 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, vol. 18, issue S2 (Suppl 2), p. 1–37, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 38–62, December 9, 2008.
Tchervenkov CI, Jacobs JP, Bernier P-L, Stellin G, Kurosawa H, Mavroudis C, Jonas RA, Cicek SM, Al-Halees Z, Elliott MJ, Jatene MB, Kinsley RH, Kreutzer C, Leon-Wyss J, Liu J, Maruszewski B, Nunn GR, Ramirez-Marroquin S, Sandoval N, Sano S, Sarris GE, Sharma R, Shoeb A, Spray TL, Ungerleider RM, Yangni-Angate H, Ziemer G. The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. In: JP Jacobs, 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, vol. 18, issue S2 (Suppl 2), p. 63–9, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 70–80, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 81–91, December 9, 2008.
Strickland MJ, Riehle-Colarusso TJ, Jacobs JP, Reller MD, Mahle WT, Botto LD, Tolbert PE, Jacobs ML, Lacour-Gayet FG, Tchervenkov CI, Mavroudis C, Correa A. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. In: 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, vol. 18, issue S2 (Suppl 2), p. 92–100, December 9, 2008.
Jacobs ML, Jacobs JP, Franklin RCG, Mavroudis C, Lacour-Gayet F, Tchervenkov CI, Walters III H, Bacha EA, Clarke DR, Gaynor JW, Spray TL, Stellin G, Ebels T, Maruszewski B, Tobota Z, Kurosawa H, Elliott M. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery. In: 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, vol. 18, issue S2 (Suppl 2), p. 101–15, December 9, 2008.
Jenkins KJ, Beekman III RH, Bergersen LJ, Everett AD, Forbes TJ, Franklin RCG, Klitzner TS, Krogmann ON, Martin GR, Webb CL. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiology. In: 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, vol. 18, issue S2 (Suppl 2), p. 116–23, December 9, 2008.
Vener DF, Jacobs JP, Schindler E, Maruszewski B, Andropoulos D. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of anaesthesia. In: 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, vol. 18, issue S2 (Suppl 2), p. 124–9, December 9, 2008.
LaRovere JM, Jeffries HE, Sachdeva RC, Rice TB, Wetzel RC, Cooper DS, Bird GL, Ghanayem NS, Checchia PA, Chang AC, Wessel DL. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of critical care. In: 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, vol. 18, issue S2 (Suppl 2), p. 130–6, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 137–44, December 9, 2008.
O’Brien SM, Gauvreau K. Statistical issues in the analysis and interpretation of outcomes for congenital cardiac surgery. In: 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, vol. 18, issue S2 (Suppl 2), p. 145–51, December 9, 2008.
Hickey EJ, McCrindle BW, Caldarone CA, Williams WG, Blackstone EH. Making sense of congenital cardiac disease with a research database: the Congenital Heart Surgeons’ Society Data Center. In: 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, vol. 18, issue S2 (Suppl 2), p. 152–62, December 9, 2008.
Jacobs ML, Jacobs JP, Jenkins KJ, Gauvreau K, Clarke DR, Lacour-Gayet FL. Stratification of complexity: the Risk Adjustment for Congenital Heart Surgery-1 Method and The Aristotle Complexity Score – past, present, and future. In: 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, vol. 18, issue S2 (Suppl 2), p. 163–8, December 9, 2008.
Clarke DR, Lacour-Gayet F, Jacobs JP, Jacobs ML, Maruszewski B, Pizarro C, Edwards FH, Mavroudis C. The assessment of complexity in congenital cardiac surgery based on objective data. In: 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, vol. 18, issue S2 (Suppl 2), p. 169–76, December 9, 2008.
Clarke DR, Breen LS, Jacobs ML, Franklin RCG, Tobota Z, Maruszewski B, Jacobs JP. Verification of data in congenital cardiac surgery. In: 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, vol. 18, issue S2 (Suppl 2), p. 177–87, December 9, 2008.
Morales DLS, McClellan AJ, Jacobs JP. Empowering a database with national long-term data about mortality: the use of national death registries. In: 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, vol. 18, issue S2 (Suppl 2), p. 188–95, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 196–201, December 9, 2008.
Deal BJ, Mavroudis C, Jacobs JP, Gevitz M, Backer CL. 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. In: 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, vol. 18, issue S2 (Suppl 2), p. 202–5, December 9, 2008.
Shann KG, Giacomuzzi CR, Harness L, Myers GJ, Paugh TA, Mellas N, Groom RC, Gomez D, Thuys CA, Charette K, Ojito JW, Tinius-Juliani J, Calaritis C, McRobb CM, Parpard M, Chancy T, Bacha E, Cooper DS, Jacobs JP, Likosky DS, on behalf of the International Consortium for Evidence-Based Perfusion. 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. In: 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, vol. 18, issue S2 (Suppl 2), p. 206–14, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 215–21, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 222–5, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 226–33, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 234–9, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 240–4, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 245–55, December 9, 2008.
Dickerson H, Cooper DS, Checchia PA, Nelson DP. 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. In: 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, vol. 18, issue S2 (Suppl 2), p. 256–64, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 265–70, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 265–270, December 9, 2008.
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: 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, vol. 18, issue S2 (Suppl 2), p. 282–530, December 9, 2008.
Tsang VT, Brown KL, Synnergren MJ, Kang N, de Leval MR, Gallivan S, Utley M. Monitoring risk-adjusted outcomes in congenital heart surgery: does the appropriateness of a risk model change with time? Ann Thorac Surg. 2009;87(2):584–7.
Jacobs JP, Shahian DM, Jacobs ML, Mavroudis C. Invited commentary of “monitoring risk-adjusted outcomes in congenital heart surgery: does the appropriateness of a risk model change with time?”. Ann Thorac Surg. 2009;87(2):587–8. PMID: 19161784.
Jacobs JP, Cerfolio RJ, Sade RM. The Ethics of Transparency: Publication of Cardiothoracic Surgical Outcomes in the Lay Press. Accepted for publication Friday December 12, 2008. The Annals of Thoracic Surgery. 2009;87(3):679–86. PMID: 19231369, March 2009.
Welke KF, O’Brien SM, Peterson ED, Ungerleider RM, Jacobs ML, Jacobs JP. The complex relationship between pediatric cardiac surgical case volumes and mortality rates in a national clinical database. J Thorac Cardiovasc Surg. 2009;137(5):1133–40. Epub 2009 Mar 17, PMID: 19379979.
Dokholyan RS, Muhlbaier LH, Falletta J, Jacobs JP, Shahian D, Haan CK, Peterson ED. Regulatory and Ethical Considerations for Linking Clinical and Administrative Databases. The American Heart Journal, accepted for publication Tuesday, April 14, 2009. Am Heart J. 2009;157(6):971–82. PMID: 19464406, June 2009.
Hammill BG, Hernandez AF, Peterson ED, Fonarow GC, Schulman KA, Curtis LH. Linking inpatient clinical registry data to Medicare claims data using indirect identifiers. The American Heart Journal, accepted for publication Tuesday, April 14, 2009. Am Heart J. 2009;157(6):995–1000, June 2009.
DeCampli WM, Burke RP. Interinstitutional comparison of risk-adjusted mortality and length of stay in congenital heart surgery. Ann Thorac Surg. 2009;88(1):151–6.
Jacobs JP, Quintessenza JA, Burke RP, Bleiweis MS, Byrne BJ, Ceithaml EL, DeCampli WM, Giroud JM, Perryman RA, Rosenkranz ER, Wolff G, Posner V, Steverson S, Blanchard WB, Schiebler GL. Regional congenital cardiac surgery of outcomes in Florida using The Society of Thoracic Surgeons Congenital Heart Surgery Database. Cardiol Young. 2009;19:360–9. doi:10.1017/S1047951109990151. First published online 6 July 2009.
Jacobs JP, Jacobs ML, Lacour-Gayet FG, Jenkins KJ, Gauvreau K, Bacha E, Maruszewski B, Clarke DR, Tchervenkov CI, Gaynor JW, Spray TL, Stellin G, O’Brien SM, Elliott MJ, Mavroudis C. Stratification of complexity improves the utility and accuracy of outcomes analysis in a Multi-Institutional Congenital Heart Surgery Database: application of the Risk Adjustment in Congenital Heart Surgery (RACHS-1) and Aristotle systems in the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database. Pediatr Cardiol. 2009. doi:10.1007/s00246-009-9496-0.
O’Brien SM, Clarke DR, Jacobs JP, Jacobs ML, Lacour-Gayet FG, Pizarro C, Welke KF, Maruszewski B, Tobota Z, Miller WJ, Hamilton L, Peterson ED, Mavroudis C, Edwards FH. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138(5):1139–53. PMID: 19837218.
Barker GM, O’Brien SM, Welke KF, Jacobs ML, Jacobs JP, Benjamin Jr DK, Peterson ED, Jaggers J, Li JS. Major infection after pediatric cardiac surgery: a risk estimation model. Ann Thorac Surg. 2010;89(3):843–50. PMID: 20172141 [PubMed – indexed for MEDLINE].
Jacobs JP, Maruszewski B, Kurosawa H, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI, Walters 3rd H, Stellin G, Ebels T, Tsang VT, Elliott MJ, Murakami A, Sano S, Mayer Jr JE, Edwards FH, Quintessenza JA. Congenital heart surgery databases around the world: do we need a global database? Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010;13(1):3–19. PMID: 20307856.
Jacobs JP, Jacobs ML, Mavroudis C, Maruszewski B, Lacour-Gayet FG, Tchervenkov CI. A correction to an analysis from the EACTS and STS congenital heart surgery databases. Ann Thorac Surg. 2010;89(4):1339.
Burstein DS, Rossi AF, Jacobs JP, Checchia PA, Wernovsky G, Li JS, Pasquali SK. Variation in models of care delivery for children undergoing congenital heart surgery in the United States. World J Pediatr Congenit Heart Surg. 2010;1:8–14.
Shann KG, Giacomuzzi CR, Jacobs JP, Myers GJ, Paugh TA, Mellas N, Puis L, Ojito JW, Gomez D, Olshove V, Fitzgerald DC, Itoh H, Brabant C, Thuys CA, Charette K, Calaritis C, Parpard M, Chancy T, Baker RA, Pourmoghadam KK, Likosky DS. Rationale and use of perfusion variables in the 2010 update of the Society of Thoracic Surgeons Congenital Heart Surgery Database. World J Pediatr Congenit Heart Surg. 2010;1:34–43.
Jacobs JP, Jacobs ML, Mavroudis C, Chai PJ, Tchervenkov CI, Lacour-Gayet FG, Walters III H, Quintessenza JA. Atrioventricular septal defects: lessons learned about patterns of practice and outcomes from the congenital heart surgery database of the Society of Thoracic Surgeons. World J Pediatr Congenit Heart Surg. 2010;1:68–77.
Johnson JN, Jaggers J, Li S, O’Brien SM, Li JS, Jacobs JP, Jacobs ML, Welke KF, Peterson ED, Pasquali SK. Center variation and outcomes associated with delayed sternal closure after stage 1 palliation for hypoplastic left heart syndrome. J Thorac Cardiovasc Surg. 2010;139(5):1205–10. Epub 2010 Feb 18.
Patel A, Hickey E, Mavroudis C, Jacobs JP, Jacobs ML, Backer CL, Gevitz M, Mavroudis CD. Impact of noncardiac congenital and genetic abnormalities on outcomes in hypoplastic left heart syndrome. Ann Thorac Surg. 2010;89(6):1805–13; discussion 1813–4. PMID: 20494032.
Fudge Jr JC, Li S, Jaggers J, O’Brien SM, Peterson ED, Jacobs JP, Welke KF, Jacobs ML, Li JS, Pasquali SK. Congenital heart surgery outcomes in down syndrome: analysis of a national clinical database. Pediatrics. 2010;126(2):315–22. Epub 2010 Jul 12.
Al Habib HF, Jacobs JP, Mavroudis C, Tchervenkov CI, O’Brien SM, Mohammadi S, Jacobs ML. Contemporary patterns of management of tetralogy of Fallot: data from the Society of Thoracic Surgeons Database. Ann Thorac Surg. 2010;90(3):813–9; discussion 819–20.
Jonas RA, Jacobs JP, Jacobs ML, Mavroudis C. Letter to the editor: reporting of mortality associated with pediatric and congenital cardiac surgery. J Thorac Cardiovasc Surg. 2010;140(3):726; author reply 726–7. PMID: 20723742.
Giroud JM, Jacobs JP, Spicer D, Backer C, Martin GR, Franklin RCG, Béland MJ, Krogmann ON, Aiello VD, Elliott MJ, Colan SD, Everett AD, Gaynor JW, Kurosawa H, Maruszewski B, Giovanni S, Tchervenkov CI, Walters III HL, Weinberg P, Anderson RH. 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 J Pediatr Congenit Heart Surg. 2010;1:300–13.
Shahian DM, Edwards F, Grover FL, Jacobs JP, Wright CD, Prager RL, Rich JB, Mack MJ, Mathisen DJ. The Society of Thoracic Surgeons National Adult Cardiac Database: a continuing commitment to excellence. J Thorac Cardiovasc Surg. 2010;140(5):955–9. PMID: 20951246.
Pasquali SK, Jacobs JP, Shook GJ, O’Brien SM, Hall M, Jacobs ML, Welke KF, Gaynor JW, Peterson ED, Shah SS, Li JS. Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population. Am Heart J. 2010;160:1099–104.
Jacobs JP, Jacobs ML, Mavroudis C, Chai PJ, Tchervenkov CI, Lacour-Gayet FG, Walters III H, Quintessenza JA. Transposition of the great arteries: lessons learned about patterns of practice and outcomes from the congenital heart surgery database of the Society of Thoracic Surgeons. World J Pediatr Congenit Heart Surg. 2011;2(1):19–31. doi:10.1177/2150135110381392.
Jacobs JP, Pasquali SK, Morales DLS, Jacobs ML, Mavroudis C, Chai PJ, Tchervenkov CI, Lacour-Gayet FG, Walters III H, Quintessenza JA. Heterotaxy: lessons learned about patterns of practice and outcomes from the congenital heart surgery database of the Society of Thoracic Surgeons. World J Pediatr Congenit Heart Surg (WJPCHS). 2011;2(2):278–86. doi:10.1177/2150135110397670.
Wallace MC, Jaggers J, Li JS, Jacobs ML, Jacobs JP, Benjamin DK, O’Brien SM, Peterson ED, Smith PB, Pasquali SK. Center variation in patient age and weight at Fontan operation and impact on postoperative outcomes. Ann Thorac Surg. 2011;91(5):1445–52. PMID: 21524453.
Bergersen L, Everett AD, Giroud JM, Martin GR, Franklin RC, Béland MJ, Krogmann ON, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL, Weinberg P, Jacobs JP. 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.
Bergersen L, Giroud JM, Jacobs JP, Franklin RC, Béland MJ, Krogmann ON, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL, Weinberg P, Everett AD. 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.
Burstein DS, Jacobs JP, Li JS, Sheng S, O’Brien SM, Rossi AF, Checchia PA, Wernovsky G, Welke KF, Peterson ED, Jacobs ML, Pasquali SK. Care models and associated outcomes in congenital heart surgery. Pediatrics. 2011;127(6):e1482–9. Epub 2011 May 16. PMID: 21576309.
Weintraub WS, Karlsberg RP, Tcheng JE, Boris JR, Buxton AE, Dove JT, Fonarow GC, Goldberg LR, Heidenreich P, Hendel RC, Jacobs AK, Lewis W, Mirro MJ, Shahian DM. 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. Writing Committee Members: Weintraub WS, Chair; Karlsberg RP, Vice-Chair; Tcheng JE, Boris JR, Buxton AE, Dove JT, Fonarow GC, Goldberg LR, Heidenreich P, Hendel RC, Jacobs AK, Lewis W, Mirro MJ, Shahian DM. ACCF/AHA Task Force on Clinical Data Standards: Hendel RC, Chair; Bozkurt B, Fonarow GC, Jacobs JP, Peterson PN, Roger VL, Smith EE, Tcheng JE, Wang T, Weintraub WS. Circulation. 2011. [Epub ahead of print]. PMID: 21646493. Circulation July 5, 2011.
Weintraub WS, Karlsberg RP, Tcheng JE, Boris JR, Buxton AE, Dove JT, Fonarow GC, Goldberg LR, Heidenreich P, Hendel RC, Jacobs AK, Lewis W, Mirro MJ, Shahian DM. 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. Writing Committee Members: Weintraub WS, Chair; Karlsberg RP, Vice-Chair; Tcheng JE, Vice-Chair; Boris JR, Buxton AE, Dove JT, Fonarow GC, Goldberg LR, Heidenreich P, Hendel RC, Jacobs AK, Lewis W, Mirro MJ, Shahian DM. ACCF/AHA Task Force on Clinical Data Standards: Hendel RC, Chair; Bozkurt B, Fonarow GC, Jacobs JP, Peterson PN, Roger VL, Smith EE, Tcheng JE, Wang T, Weintraub WS. J Am Coll Cardiol. Published online 6 June 2011. doi:10.1016/j.jacc.2011.05.001. J Am Coll Cardiol. 2011;58(2). © 2011 by the American College of Cardiology Foundation and the American Heart Association, Inc. ISSN 0735-1097. Published by Elsevier Inc.
Jacobs JP, Edwards FH, Shahian DM, Prager RL, Wright CD, Puskas JD, Morales DL, Gammie JS, Sanchez JA, Haan CK, Badhwar V, George KM, O’Brien SM, Dokholyan RS, Sheng S, Peterson ED, Shewan CM, Feehan KM, Han JM, Jacobs ML, Williams WG, Mayer Jr JE, Chitwood Jr WR, Murray GF, Grover FL. Successful linking of the Society of Thoracic Surgeons Database to Social Security data to examine survival after cardiac operations. Ann Thorac Surg. 2011;92(1):32–9. PMID: 21718828.
Jacobs ML, Daniel M, Mavroudis C, Morales DLS, Jacobs JP, Fraser CD, Turek JW, Mayer JE, Tchervenkov C, Conte JV. Report of the 2010 Society of Thoracic Surgeons Congenital Heart Surgery Practice and Manpower survey. Ann Thorac Surg. 2011;92:762–9.
Petrucci O, O’Brien SM, Jacobs ML, Jacobs JP, Manning PB, Eghtesady P. Risk factors for mortality and morbidity after the neonatal Blalock-Taussig shunt procedure. Ann Thorac Surg. 2011;92(2):642–51; discussion 651–2. Epub 2011 May 8. PMID: 21550583.
Shahian DM, Edwards FH, Jacobs JP, Prager RL, Normand SL, Shewan CM, O’Brien SM, Peterson ED, Grover FL. Public reporting of cardiac surgery performance: part 1-history, rationale, consequences. Ann Thorac Surg. 2011;92(3 Suppl):S2–11. PMID: 21867789.
Shahian DM, Edwards FH, Jacobs JP, Prager RL, Normand SL, Shewan CM, O’Brien SM, Peterson ED, Grover FL. Public reporting of cardiac surgery performance: part 2-implementation. Ann Thorac Surg. 2011;92(3 Suppl):S12–23. PMID: 21867788.
Jacobs JP, Pasquali SK, Gaynor JW. Invited commentary: the assessment of outcomes and the improvement of quality of the treatment of patients with congenital and pediatric cardiac disease. World J Pediatr Congenit Heart Surg (WJPCHS). 2011;2(4):597–602. doi:10.1177/2150135111418258.
Jacobs JP, Pasquali SK, Jeffries H, Barnett-Jones S, Cooper DC, Vincent R. Outcomes analysis and quality improvement for the treatment of patients with pediatric and congenital cardiac disease. World J Pediatr Congenit Heart Surg (WJPCHS). 2011;2(4):620–33. doi:10.1177/2150135111406293.
Hornik CP, He X, Jacobs JP, Li JS, Jaquiss RD, Jacobs ML, O’Brien SM, Peterson ED, Pasquali SK. Complications after the Norwood operation: an analysis of The Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2011;92(5):1734–40. Epub 2011 Sep 19. PMID: 2193702.
Mascio CE, Pasquali SK, Jacobs JP, Jacobs ML, Austin 3rd EH. Outcomes in adult congenital heart surgery: analysis of the Society of Thoracic Surgeons Database. J Thorac Cardiovasc Surg. 2011;142(5):1090–7. Epub 2011 Sep 10. PMID: 21911232.
Jacobs JP, O’Brien SM, Pasquali SK, Jacobs ML, Lacour-Gayet FG, Tchervenkov CI, Austin 3rd EH, Pizarro C, Pourmoghadam KK, Scholl FG, Welke KF, Mavroudis C. Richard E. Clark paper: Variation in outcomes for benchmark operations: An analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2011;92(6):2184–92. PMID: 22115229.
Barach PR, Jacobs JP, Laussen PC, Lipshultz SE. Outcomes analysis, quality improvement, and patient safety for pediatric and congenital cardiac care: theory, implementation, and applications. Progress Pediatr Cardiol. 2011;32:65–7. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special issue 1, vol. 32, issue 2, p. 65–153.
Jacobs JP, Morales DLS. Strategies for longitudinal follow-up of patients with pediatric and congenital cardiac disease. Progress Pediatr Cardiol. 2011;32:97–102. doi:10.1016/j.ppedcard.2011.10.007. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special issue 1, vol. 32, issue 2, p. 65–153.
Winlaw DS, Large MM, Jacobs JP, Barach PR. Leadership, surgeon well-being and non-technical competencies of pediatric cardiac surgery. Progress Pediatr Cardiol. 2011;32:129–33. doi:10.1016/j.ppedcard.2011.10.011. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special issue 1, vol. 32, issue 2, p. 65–153.
Jacobs JP, Jacobs ML, Austin EH, Mavroudis M, Pasquali SK, Lacour–Gayet FG, Tchervenkov CI, Walters III HW, Bacha EA, del Nido PJ, Fraser CD, Gaynor JW, Hirsch JC, Morales DLS, Pourmoghadam KK, Tweddell JT, Prager RL, Mayer JE. Quality measures for congenital and pediatric cardiac surgery. World J Pediatr Congenit Heart Surg. 2012;3(1):32–47. doi:10.1177/2150135111426732.
Russell HM, Pasquali SK, Jacobs JP, Jacobs ML, O’Brien SM, Mavroudis C, Backer CL. Outcomes of repair of common arterial trunk with truncal valve surgery: a review of The Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2012;93(1):164–9. Epub 2011 Nov 16. PMID:22088417.
Barach PR, Jacobs JP, Laussen PC, Lipshultz SE. Outcomes analysis, quality improvement, and patient safety for pediatric and congenital cardiac care: theory, implementation, and applications part 2. Progress Pediatr Cardiol. 2012;33(1):1–3. doi:10.1016/S1058-9813(12)00003-3. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special part 2. 2012;33(1):1–101.
Pasquali SK, Li JS, Jacobs ML, Shah SS, Jacobs JP. Opportunities and challenges in linking information across databases in pediatric cardiovascular medicine. Progress Pediatr Cardiol. 2012;33(1):21–4. doi:10.1016/j.ppedcard.2011.12.004. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special part 2. 2012;33(1):1–101.
Gaies MG, Jeffries HE, Jacobs JP, Laussen PC. Measuring quality and outcomes in pediatric cardiac critical care. Progress Pediatr Cardiol. 2012;33(1):33–6. doi:10.1016/j.ppedcard.2011.12.006. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special part 2. 2012;33(1):1–101.
Giroud JM, Jacobs JP, Fricker FJ, Spicer D, Backer C, Franklin RCG, Béland MJ, Krogmann ON, Aiello VD, Colan SD, Everett AD, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters III HL, Weinberg P, Fogel MA, Jacobs ML, Elliott MJ, Anderson RH. Proposal for a web based “global virtual museum of congenital cardiac pathology”. Progress Pediatr Cardiol. 2012;33(1):91–7. doi:10.1016/j.ppedcard.2011.12.015. In: Lipshultz SE, Barach P, Jacobs JP, Laussen P, editors. Progress in pediatric cardiology: the future of pediatric and congenital cardiac care special part 2. 2012;33(1):1–101.
Pasquali SK, Li JS, Burstein DS, Sheng S, O’Brien SM, Jacobs ML, Jaquiss RD, Peterson ED, Gaynor JW, Jacobs JP. Association of center volume with mortality and complications in pediatric heart surgery. Pediatrics. 2012;129(2):e370–6. Epub 2012 Jan 9. PMID: 22232310.
Pasquali SK, Li JS, He X, Jacobs ML, O’Brien SM, Hall M, Jaquiss RDB, Welke KF, Peterson ED, Shah SS, Gaynor JW, Jacobs JP. Perioperative methylprednisolone and outcome in neonates undergoing heart surgery. Pediatrics. 2012;129(2):e385–91. Epub 2012 Jan 23. PMID: 22271697.
Pasquali SK, Li JS, He X, Jacobs ML, O’Brien SM, Hall M, Jaquiss RDB, Welke KF, Peterson ED, Shah SS, Jacobs JP. Comparative analysis of antifibrinolytic medications in pediatric heart surgery. J Thorac Cardiovasc Surg. 2012;143(3):550–7. Epub 2012 Jan 20. PMID: 22264414.
Stewart RD, Pasquali SK, Jacobs JP, Benjamin DK, Jaggers J, Cheng J, Mavroudis C, Jacobs ML. Contemporary Fontan operation: association between early outcome and type of cavopulmonary connection. Winner of the 2011 Clifford Van Meter President’s Award for the best scientific paper presented at the 2011 STSA 58th annual meeting in San Antonio. Ann Thorac Surg. 2012;93(4):1254–61. PMID: 22450074.
Pasquali SK, Jacobs JP, He X, Hornik CP, Jaquiss RDB, Jacobs ML, O’Brien SM, Peterson ED, Li JS. The complex relationship between center volume and outcome in patients undergoing the Norwood operation. Ann Thorac Surg. 2012;93(5):1556–62. Epub 2011 Oct 19. PMID: 22014746.
Hornik CP, He X, Jacobs JP, Li JS, Jaquiss RD, Jacobs ML, O’Brien SM, Welke K, Peterson ED, Pasquali SK. Relative impact of surgeon and center volume on early mortality after the Norwood operation. Ann Thorac Surg. 2012;93(6):1992–7. Epub 2012 Apr 18. PMID: 22516833.
Jacobs JP, O’Brien SM, Pasquali SK, Jacobs ML, Lacour-Gayet FG, Tchervenkov CI, Austin 3rd EH, Pizarro C, Pourmoghadam KK, Scholl FG, Welke KF, Gaynor JW, Clarke DR, Mayer Jr JE, Mavroudis C. Variation in outcomes for risk-stratified pediatric cardiac surgical operations: An analysis of the STS congenital heart surgery database. Ann Thorac Surg. 2012;94(2):564–72. Epub 2012 Jun 15. PMID: 22704799.
Pasquali SK, He X, Jacobs JP, Jacobs ML, O’Brien SM, Gaynor JW. Evaluation of failure to rescue as a quality metric in pediatric heart surgery: an analysis of the STS congenital heart surgery database. Ann Thorac Surg. 2012;94(2):573–80. Epub 2012 May 24. PMID: 22633496.
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. Congenit Cardiol Today. 2012;10(8):8–10.
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. Congenit Cardiol Today. 2012;10(8):14–5.
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. Congenit Cardiol Today. 2012;10(10):20–1.
Woods RK, Pasquali SK, Jacobs ML, Austin EH, Jacobs JP, Krolikowski M, Mitchell ME, Pizarro C, Tweddell JS. Aortic valve replacement in neonates and infants: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. J Thorac Cardiovasc Surg. 2012;144(5):1084–90. doi:10.1016/j.jtcvs.2012.07.060. PMID: 22921819. Epub 2012 Aug 24.
Jacobs JP, Jacobs ML, Maruszewski B, Lacour-Gayet FG, Tchervenkov CI, Tobota Z, Stellin G, Kurosawa H, Murakami A, Gaynor JW, Pasquali SK, Clarke DR, Austin 3rd EH, Mavroudis C. Initial application in the EACTS and STS Congenital Heart Surgery Databases of an empirically derived methodology of complexity adjustment to evaluate surgical case mix and results. Eur J Cardiothorac Surg. 2012;42(5):775–80. doi:10.1093/ejcts/ezs026. PMID: 22700597. Epub 2012 Jun 14.
Dibardino DJ, Pasquali SK, Hirsch JC, Benjamin DK, Kleeman KC, Salazar JD, Jacobs ML, Mayer JE, Jacobs JP. Richard E. Clark paper: effect of sex and race on outcome in patients undergoing congenital heart surgery: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. Richard Clark Award recipient for best use of the STS Congenital Heart Surgery Database. Ann Thorac Surg. 2012;94(6):2054–60. doi:10.1016/j.athoracsur.2012.05.124. Epub 2012 Aug 9. PMID: 22884593.
Kansy A, Jacobs JP, Pastuszko A, Mirkowicz-Małek M, Manowska M, Jezierska E, Maruszewski P, Burczyński P, Maruszewski B. Major infection after pediatric cardiac surgery: external validation of risk estimation model. Ann Thorac Surg. 2012;94(6):2091–5. doi:10.1016/j.athoracsur.2012.07.079. Epub 2012 Oct 4. PMID: 23040826.
Vener DF, Guzzetta N, Jacobs JP, Williams GD. Development and implementation of a new data registry in congenital cardiac anesthesia. Ann Thorac Surg. 2012;94(6):2159–65. doi:10.1016/j.athoracsur.2012.06.070. PMID: 23176940.
Pasquali SK, Gaies MG, Jacobs JP, William Gaynor J, Jacobs ML. Centre variation in cost and outcomes for congenital heart surgery. Cardiol Young. 2012;22(6):796–9. PMID: 23331604.
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. Congenit Cardiol Today. 2012;10(12):8–9.
Pasquali SK, Peterson ED, Jacobs JP, He X, Li JS, Jacobs ML, Gaynor JW, Hirsch JC, Shah SS, Mayer JE. 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. doi:10.1016/j.athoracsur.2012.08.074. Epub 2012 Nov 7. PMID: 23141907.
Ungerleider RM, Pasquali SK, Welke KF, Wallace AS, Ootaki Y, Quartermain MD, Williams DA, Jacobs JP. Contemporary patterns of surgery and outcomes for aortic coarctation: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. J Thorac Cardiovasc Surg. 2013;145(1):150–8. doi:10.1016/j.jtcvs.2012.09.053. PMID: 23098750. Epub 2012 Oct 23.
Overman D, Jacobs JP, Prager RL, Wright CD, Clarke DR, Pasquali S, O’Brien SM, Dokholyan RS, Meehan P, McDonald DE, Jacobs ML, Mavroudis C, Shahian DM. Report from The Society of Thoracic Surgeons National Database Work Force: clarifying the definition of operative mortality. World J Pediatr Congenit Heart Surg (WJPCHS). 2013;4(1):10–2. doi:10.1177/2150135112461924.
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. Congenit Cardiol Today. 2013;11(2):13–4.
Jacobs JP, O’Brien SM, Shahian DM, Edwards FH, Badhwar V, Dokholyan RS, Sanchez JA, Morales DL, Prager RL, Wright CD, Puskas JD, Gammie JS, Haan CK, George KM, Sheng S, Peterson ED, Shewan CM, Han JM, Bongiorno PA, Yohe C, Williams WG, Mayer JE, Grover FL. Successful linking of the Society of Thoracic Surgeons Database to Social Security data to examine the accuracy of Society of Thoracic Surgeons mortality data. J Thorac Cardiovasc Surg. 2013;145(4):976–83. doi:10.1016/j.jtcvs.2012.11.094. PMID: 23497944.
Jacobs ML, O’Brien SM, Jacobs JP, Mavroudis C, Lacour-Gayet F, Pasquali SK, Welke K, Pizarro C, Tsai F, Clarke DR. An empirically based tool for analyzing morbidity associated with operations for congenital heart disease. J Thorac Cardiovasc Surg. 2013;145(4):1046–1057.e1. doi:10.1016/j.jtcvs.2012.06.029. Epub 2012 Jul 24. PMID: 22835225.
Pasquali SK, Jacobs JP. The role of databases in improving the quality of care for congenital heart disease. World J Pediatr Congenit Heart Surg. 2013;4(2):139–41. doi:10.1177/2150135113480221. PMID: 23799726.
Kansy A, Maruszewski B, Jacobs JP, Maruszewski P. Application of four complexity stratification tools (Aristotle Basic Score, RACHS-1, STAT Mortality Score, and STAT Mortality Categories) to evaluate early congenital heart surgery outcomes over 16 years at a single institution. Kardiochirurgia i Torakochirurgia Polska. 2013;10(2):115–9. doi:10.5114/kitp.2013.36129.
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. Congenit Cardiol Today. 2013;11(5):8–9.
Pasquali SK, He X, Jacobs ML, Hall M, Gaynor JW, Shah SS, Peterson ED, Hill KD, Li JS, Jacobs JP. Hospital variation in postoperative infection and outcome after congenital heart surgery. Ann Thorac Surg. 2013;96(2):657–63. doi:10.1016/j.athoracsur.2013.04.024. Epub 2013 Jun 28. PMID: 23816416.
Shahian DM, He X, Jacobs JP, Rankin JS, Peterson ED, Welke KF, Filardo G, Shewan CM, O’Brien SM. Issues in quality measurement: target population, risk adjustment, and ratings. Ann Thorac Surg. 2013;96(2):718–26. doi:10.1016/j.athoracsur.2013.03.029. Epub 2013 Jun 29. PMID: 23816415.
Shahian DM, Jacobs JP, Edwards FH, Brennan JM, Dokholyan RS, Prager RL, Wright CD, Peterson ED, McDonald DE, Grover FL. The Society of Thoracic Surgeons National Database. Heart. 2013;99(20):1494–501. doi:10.1136/heartjnl-2012-303456. PMID: 23335498. Epub 2013 Jan 18.
Jacobs JP, Maruszewski M. Functionally univentricular heart and the Fontan operation: lessons learned about patterns of practice and outcomes from the congenital heart surgery databases of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons. World J Pediatr Congenit Heart Surg. 2013;4:349–55. doi:10.1177/2150135113494228.
Mascio CE, Austin 3rd EH, Jacobs JP, Jacobs ML, Wallace AS, He X, Pasquali SK. Perioperative mechanical circulatory support in children: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. J Thorac Cardiovasc Surg. 2013. doi:10.1016/j.jtcvs.2013.09.075. PMID: 24246548.
Hendel RC, Bozkurt B, Smith EE, Fonarow GC, Tcheng JE, Jacobs JP, Wang TY, Lichtman JH, Weintraub WS, ACC/AHA Task Force on Clinical Data Standards. 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. 2013. doi:10.1016/j.jacc.2013.11.006. PMID: 24246166.
Hendel RC, Bozkurt B, Fonarow GC, Jacobs JP, Lichtman JH, Smith EE, Tcheng JE, Wang TY, Weintraub WS. 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. 2013. [Epub ahead of print]. PMID: 24243855.
Jacobs JP, Pasquali SK, Austin E, Gaynor JW, Backer C, Romano JCH, Williams WG, Caldarone C, McCrindle BW, Graham K, Dokholyan RS, Shook G, Poteat J, Baxi M, Karamlou T, Morris JA, Blackstone EH, Mavroudis C, Mayer Jr JE, Jonas RA, Jacobs ML. Linking the congenital heart surgery databases of the Society of Thoracic Surgeons (STS) and the Congenital Heart Surgeons’ Society (CHSS): part 1 – rationale and methodology. World J Pediatr Congenit Heart Surg (WJPCHS). 2014;5(2):256–71. doi:10.1177/2150135113519454.
Jacobs JP, Pasquali SK, Austin E, Gaynor JW, Backer C, Romano JCH, Williams WG, Caldarone C, McCrindle BW, Graham K, Dokholyan RS, Shook G, Poteat J, Baxi M, Karamlou T, Morris JA, Blackstone EH, Mavroudis C, Mayer Jr JE, Jonas RA, Jacobs ML. Linking the congenital heart surgery databases of the Society of Thoracic Surgeons (STS) and the Congenital Heart Surgeons’ Society (CHSS): part 2 – lessons learned and implications. World J Pediatr Congenit Heart Surg (WJPCHS). 2014;5(2):272–82. doi:10.1177/2150135113519455.
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Jacobs, J.P. (2015). Databases for Assessing the Outcomes of the Treatment of Patients with Congenital and Pediatric Cardiac Disease: The Perspective of Cardiac Surgery. In: Barach, P., Jacobs, J., Lipshultz, S., Laussen, P. (eds) Pediatric and Congenital Cardiac Care. Springer, London. https://doi.org/10.1007/978-1-4471-6587-3_8
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