Cervantes, Jorge

Jacobs, Jeffery P

Jonas, Richard A

Kirklin, James K

Kurosawa, Hiromi

Sakamoto, Kisaburo

Sandoval, Nestor

St Louis, James D

Stellin, Giovanni

Tchervenkov, Christo I

English

George Washington University: Health Sciences Research Commons (HSRC)

Himmelfarb Health Sciences Library, The George Washington UniversityHealth Sciences Research CommonsSurgery Faculty Publications Surgery9-1-2017The World Database for Pediatric and CongenitalHeart Surgery: The Dawn of a New Era of GlobalCommunication and Quality Improvement inCongenital Heart Disease.James D St LouisHiromi KurosawaRichard A JonasGeorge Washington UniversityNestor SandovalJorge CervantesSee next page for additional authorsFollow this and additional works at: https://hsrc.himmelfarb.gwu.edu/smhs_surgery_facpubsPart of the Congenital, Hereditary, and Neonatal Diseases and Abnormalities Commons, and theSurgery CommonsThis Journal Article is brought to you for free and open access by the Surgery at Health Sciences Research Commons. It has been accepted for inclusionin Surgery Faculty Publications by an authorized administrator of Health Sciences Research Commons. For more information, please contacthsrc@gwu.edu.APA CitationSt Louis, J., Kurosawa, H., Jonas, R., Sandoval, N., Cervantes, J., Tchervenkov, C., Jacobs, J., Sakamoto, K., Stellin, G., & Kirklin, J.(2017). The World Database for Pediatric and Congenital Heart Surgery: The Dawn of a New Era of Global Communication andQuality Improvement in Congenital Heart Disease.. World Journal of Pediatric Congenital Heart Surgery, 8 (5). http://dx.doi.org/10.1177/2150135117725458AuthorsJames D St Louis, Hiromi Kurosawa, Richard A Jonas, Nestor Sandoval, Jorge Cervantes, Christo ITchervenkov, Jeffery P Jacobs, Kisaburo Sakamoto, Giovanni Stellin, and James K KirklinThis journal article is available at Health Sciences Research Commons: https://hsrc.himmelfarb.gwu.edu/smhs_surgery_facpubs/551ISSN: 2233-601X (Print)   ISSN: 2093-6516 (Online)− 81 −Received: July 12, 2017, Revised: August 16, 2017, Accepted: August 16, 2017, Published online: February 5, 2018Corresponding author: James D. St. Louis, Department of Surgery, University of Missouri-Kansas City School of Medicine, 2401 Gillham Road, Kansas City, MO 64108, USA(Tel) 1-8162343580 (Fax) 1-8162346676 (E-mail) jdstlouis@cmh.edu© The Korean Society for Thoracic and Cardiovascular Surgery. 2018. All right reserved. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/ licenses/by-nc/4.0) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properlycited.Table 1. Congenital cardiac programs in South KoreaCongenital cardiac programsAsan Medical CenterChonnam National University HospitalChungnam National University HospitalEwha Womans University Mokdong HospitalGachon University Gil Medical CenterKeimyung University Dongsan Medical CenterKorea University Ansan HospitalKyungpook National University HospitalPusan National University Yangsan HospitalSamsung Medical CenterSejong General HospitalSeoul National University Children’s HospitalSeoul St. Mary’s HospitalSeverance Cardiovascular HospitalThe World Database for Pediatric and Congenital Heart Surgery: Use of an International Congenital Database in South KoreaJames D. St. Louis, M.D.1, Cheul Lee, M.D.2, Hiromi Kurosawa, M.D.3, Richard A. Jonas, M.D.4, Sakamoto Kisaburo, M.D.5, Christo I. Tchervenkov, M.D.6, Jeffery P. Jacobs, M.D.7, James K. Kirklin, M.D.81Department of Surgery, University of Missouri-Kansas City School of Medicine, 2Department of Thoracic and Cardiovascular Surgery, Seoul St. Mary’s Hospital, College of Medicine, The Catholic University of Korea, 3Department of Cardiovascular Surgery, Heart Institute of Japan, Tokyo Women’s Medical University, 4Department of Cardiac Surgery, Children’s National Health System, 5Department of Cardiovascular Surgery, Mt Fuji Shizuoka Children’s Hospital, 6Division of Pediatric Cardiovascular Surgery, The Montreal Children’s Hospital of the McGill University Health Centre, 7Division of Cardiovascular of Surgery, Johns Hopkins All Children’s Heart Institute, Johns Hopkins All Children’s Hospital and Florida Hospital for Children, Johns Hopkins University, 8Division of Cardiothoracic Surgery, University of Alabama at BirminghamMore than a decade has elapsed since the historic inaugural meeting of the World Society for Pediatric and Congenital Heart Surgery (WSPCHS). The leaders and participants of this event were motivated and in-spired by the prospect of a new era of global com-munication in the field of congenital heart disease. Their mission, galvanized by the ratification of the society’s constitution, directed new members to promulgate efforts to “promote the highest quality of comprehensive cardiac care to all patients with con-genital heart disease across the globe,” with a mes-sage that would be realized for decades to come [1]. Cardiovascular disease remains the second leading cause of premature death in the Republic of Korea [2], and congenital cardiac surgical programs con-tinue to develop and grow accordingly. Already, ap-proximately 3,000 congenital cardiac operations are conducted each year by 28 active congenital heart surgeons throughout the country. As the 14 in-stitutions with active congenital heart programs are located in major urban centers (Table 1), efforts to create more regional cardiac centers will surely lead to an increase in case volume as surgical options be-come more readily accessible to rural populations. As with other countries, a national database to provide quality improvement tools and the ability to track long-term outcomes is critical for the evolution of congenital cardiac surgery in the Republic of Korea. https://doi.org/10.5090/kjtcs.2018.51.1.81Korean J Thorac Cardiovasc Surg 2018;51:81-84 □ BRIEF COMMUNICATION □James D. St. Louis, et al− 82 −Table 2. Data collection formsForm name Data to be enteredInstitutional practice details Information detailing the institution’s congenital cardiac surgical practice (e.g., annual case volume, population and region served, number of congenital heart surgeons)Demographics Patient information (e.g., patient name, gender, date of birth)Preoperative Preoperative details of patient history (e.g., prior cardiac operations, chromosomal or syndromic abnormalities, preoperative risk factors)Surgery Surgical data (e.g., height and weight at surgery, bypass time, cross-clamp time)Discharge Complication and discharge information (e.g., reoperations required, nature of postoperative complications)Follow-up Data from 1 year post-index operation (e.g., readmission required, reoperation required, patient status)Death Details of death (e.g., date of death, cause of death, autopsy findings)The World Database for Pediatric and Congenital Heart Surgery (WDPCHS) is strategically positioned to effortlessly provide such a service to all congenital cardiac surgical programs in the Republic of Korea. The WDPCHS possesses the tools to function as a na-tional resource for such efforts with a modest ex-penditure of resources from individual institutions.The history of the WDPCHS began during the Fourth Scientific Session of the 2014 WSPCHS annual meeting in São Paulo, Brazil. A town hall meeting was convened to evaluate the need for and to ex-plore the possibility of establishing a global database that would be available to all members of the Society. After much debate and consideration, a com-mittee was established to advance, with the support of the society, a database that would collect vital in-formation, allowing all centers, including those flour-ishing in the Republic of Korea, to benchmark their outcomes and progress in providing surgical care to children with congenital heart disease. It was ex-pected that a large number of centers in all regions of the world, regardless of their economic conditions, would benefit from the quality assessment tools pro-vided and supported by an international consortium of congenital cardiac surgical programs. As programs grow and evolve within the Republic of Korea, this data-sharing model will provide critical information to aid in the effort to constantly assess and improve quality, ultimately ensuring that every child suffering from congenital heart disease receives the best possi-ble cardiac care.The WSPCHS was fortunate to retain the services of the James and John Kirklin Institute for Research in Surgical Outcomes at the University of Alabama at Birmingham. Under the leadership of James K. Kirklin, this institute and its precursor organization have been and continue to be responsible for the creation and maintenance of both nationally and in-ternationally-acclaimed clinical databases [3]. With the experience of this institute and invaluable input from multiple international experts in the fields of both congenital heart disease and database develop-ment, a global platform for information exchange was created and adjudicated by members of the society. The WDPCHS went live on January 1, 2017, following an extensive period of planning focused on determin-ing the appropriate variables to collect, creating a de-sign that can be applied on a global scale regardless of socioeconomic status, and engaging in strategies to encourage international participation.The WDPCHS is designed to produce meaningful performance and quality analyses of surgical out-comes that extend beyond immediate hospital surviv-al, capturing important morbidities and mortalities for up to a year postoperatively. By utilizing stand-ardized terms and definitions developed and ad-judicated by several national and international expert organizations, the database has embraced a common language, communication, and assessment of con-genital cardiac practices across the globe. In order to provide individual centers adequately detailed out-come analyses while remaining cognizant of limited financial and personnel resources, variables were se-lected to provide the greatest opportunity to evaluate programmatic deficiencies and to implement neces-sary improvements in preoperative selection, intra-operative performance, and postoperative manage-ment. Institutions will be able to confidentially com-pare their center-specific data to regional, national, and international aggregate data, allowing the identi-World Database− 83 −Table 3. Tier I proceduresProcedure nameVentricular septal defect repairAtrioventricular septal defect repairCoarctation repairPAPVC repairTAPVC repairGlenn/Hemi-Fontan procedureFontan procedureTetralogy of Fallot repairArterial switch operationEbstein’s anomaly repairTruncus arteriosus repairModified Norwood procedureHLHS biventricular repairPAPVC, partial anomalous pulmonary venous connection; TAPVC, total anomalous pulmonary venous connection; HLHS, hypoplastic left heart syndrome.fication and implementation of quality improvement strategies. Table 2 illustrates the organization of the database and the types of information that are being collected. Institutional practice data are collected in sufficient detail to facilitate the creation of an inter-national registry of congenital cardiac centers. The information collected in this category includes annual center case volumes, the number of congenital car-diac surgeons actively practicing at the center, the geographic region served, the population served, the number of other institutions within the geographic region, and a description of the services provided. The surgery form requires the input of only 19 variables. Several of these variables, such as the pri-mary cardiac procedure and cardiac diagnosis, are organized into easy-to-navigate drop-down menus with categories reflecting routine clinical practice. These variables, including prior cardiac operations, preoperative risk factors, weight, cardiopulmonary bypass time, and intraoperative complications, were chosen by international experts in the field of con-genital cardiac surgery to reliably represent the oper-ative conduct of a surgical program. The collection of follow-up information on readmission, morbidities, and mortalities for up to a year postoperatively is a distinguishing feature that separates this database from others. This longitudinal follow-up will provide for the first time a global picture of longitudinal care beyond the immediate postoperative period.Data quality is critical, and excessive data collec-tion may lead to the dilution of efficient and effective analysis, increased expenditure of valuable resources, and loss of enthusiasm from participating members [4]. For these reasons, surgical procedures are as-signed to 1 of 2 categories within the database. This 2-tiered system was created to allow for both the in-put of detailed data for a pre-selected group of surgi-cal procedures and the collection of a limited num-ber of variables for all cardiac operations performed (Table 3). The additional follow-up data cover im-portant morbidities, readmission for interventions re-lated to the index surgical procedure, and mortality for up to 1 year postoperatively. Importantly, the da-tabase will maintain the flexibility to incorporate ad-ditional procedures in the tier I category as centers gain experience with the database and come to rec-ognize its value, both for quality assurance and research.To advance its societal mission, the WSPCHS has made this global quality improvement program avail-able to its members free of charge. WSPCHS mem-bers from programs that lack sufficient resources and facilities to undertake sophisticated outcome analyses or whose country does not presently have a national database will particularly benefit from this endeavor. By establishing the World Database, the WSPCHS is taking an essential step in the process of global im-provement of care for children with congenital heart disease. In the longer term, we anticipate that the in-clusion of more data in a global database will enable more accurate risk adjustment than is possible using national registries. The World Society invites all in-stitutions in the Republic of Korea to fully participate in this important initiative. More detailed information concerning the WDPCHS can be found at http://www. uab.edu/medicine/wdpchs/.Conflict of interestNo potential conflict of interest relevant to this ar-ticle was reported.Comments from editorialsI read with much interest the manuscript titled “The World Database for Pediatric and Congenital Heart Surgery”. This is a very timely and concise re-James D. St. Louis, et al− 84 −view raising attention to the world database of con-genital cardiac surgery. I think the manuscript can be published in our journal as it is. However, I would like to add a comment as a con-genital cardiac surgeon in Korea. In the 1st para-graph, the author mentioned “Cardiovascular disease remains the second leading cause of premature death in the Republic of Korea [2], and congenital cardiac surgical programs continue to develop and grow accordingly.”, which provides a somewhat weak basis of the need for world database in Korea. Some Korean surgeons would not agree with that point of view although the cited statistics are true. Korea ranked 11th place in ‘life expectancy at birth’ http:// gamapserver.who.int/gho/interactive_charts/mbd/life_ expectancy/atlas.html and 3rd place in ‘healthy life expectancy at birth’ http://gamapserver.who.int/gho/ interactive_charts/mbd/hale_1/atlas.html according to WHO 2015 data. The mortality of congenital heart surgery in Korea seems around 2.5-3.4% between 2007 and 2011 (http://ktcvs.inforang.com/data/html/ CHD2009.pdf). In my opinion, the necessity for larger scale database lies on that point. We don’t have any national database for CHD and even can’t find any simple collection of surgical results since 2012 al-though some Korean surgeons may claim good re-sults from their own data and our society provides good health care.Ji-Hyuk Yang, M.D.References1. Kirklin JK, St Louis JD. Databases in pediatric cardiac sur-gery: a nexus of opportunity and obligation. World J Pediatr Congenit Heart Surg 2016;7:675-6.2. World Health Organization. 2014/2015 World Health Organization data for the Republic of Korea [Internet]. Geneva: World Health Organization; 2014 [cited 2017 Jul 6]. Available from: http://www.who.int/nmh/countries/ kor_en.pdf?ua=1.3. Vener DF, Gaies M, Jacobs JP, Pasquali SK. Clinical data-bases and registries in congenital and pediatric cardiac surgery, cardiology, critical care, and anesthesiology worldwide. World J Pediatr Congenit Heart Surg 2017;8: 77-87.4. 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.

The World Database for Pediatric and Congenital Heart Surgery: The Dawn of a New Era of Global Communication and Quality Improvement in Congenital Heart Disease.

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The World Database for Pediatric and Congenital Heart Surgery: The Dawn of a New Era of Global Communication and Quality Improvement in Congenital Heart Disease.

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