Hostname: page-component-cd9895bd7-lnqnp Total loading time: 0 Render date: 2024-12-25T09:11:02.487Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Part of: The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD)

Published online by Cambridge University Press:  01 December 2008

Christo I. Tchervenkov ,
Jeffrey Phillip Jacobs ,
Pierre-Luc Bernier ,
Giovanni Stellin ,
Hiromi Kurosawa ,
Constantine Mavroudis ,
Richard A. Jonas ,
Sertac M. Cicek ,
Zohair Al-Halees  and
Martin J. Elliott
...Show all authors
Christo I. Tchervenkov*
Affiliation:
Division of Pediatric Cardiovascular Surgery, The Montreal Children’s Hospital of the McGill University Health Centre, Montréal, Quebec, Canada
Jeffrey Phillip Jacobs
Affiliation:
The Congenital Heart Institute of Florida (CHIF), Division of Thoracic and Cardiovascular Surgery, All Children’s Hospital and Children’s Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates (CSA), Saint Petersburg and Tampa, Florida, United States of America
Pierre-Luc Bernier
Affiliation:
Division of Pediatric Cardiovascular Surgery, The Montreal Children’s Hospital of the McGill University Health Centre, Montréal, Quebec, Canada
Giovanni Stellin
Affiliation:
Pediatric Cardiac Surgery Unit, University of Padova Medical School, Padova, Italy
Hiromi Kurosawa
Affiliation:
Cardiovascular Surgery, Heart Institute of Japan, Tokyo Women’s Medical University, Tokyo, Japan
Constantine Mavroudis
Affiliation:
Department of Surgery, Division of Cardiovascular-Thoracic Surgery, Northwestern University Medical School, Children’s Memorial Hospital, Chicago, IL, United States of America
Richard A. Jonas
Affiliation:
Department of Cardiac Surgery, Children’s National Heart Institute, Children’s National Medical Center, Washington, DC, United States of America
Sertac M. Cicek
Affiliation:
Dr. Siyami Ersek Thoracic and Cardiovascular Surgery Center, Istanbul, Turkey
Zohair Al-Halees
Affiliation:
King Faisal Heart Institute, King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia
Martin J. Elliott
Affiliation:
Cardiothoracic Surgery, Hospital for Sick Children, Great Ormond Street, London, United Kingdom
Marcelo B. Jatene
Affiliation:
Department of Pediatric Cardiac Surgery and Pediatric Cardiology, Heart Institute, University of São Paulo Medical School, SP, São Paulo, Brazil
Robin H. Kinsley
Affiliation:
Department of Cardiac Surgery, Walter Sisulu Pediatric Cardiac Center for Africa, Netcare Sunninghill Hospital, Johannesburg, South Africa
Christian Kreutzer
Affiliation:
Division of Cardiac Surgery, Hospital de Niños Ricardo Gutierrez, Buenos Aires, Argentina
Juan Leon-Wyss
Affiliation:
Department of Pediatric Cardiac Surgery of Guatemala, UNICAR, Guatemala City, CA, Guatemala
Jinfen Liu
Affiliation:
Department of Pediatric Thoracic and Cardiovascular Surgery, Xinhua Hospital, Shanghai Children’s Medical Center, Shanghai Second Medical University, Shanghai, China
Bohdan Maruszewski
Affiliation:
Cardiac Surgery, Memorial Hospital Child’s Health Centre, Warsaw, Poland
Graham R. Nunn
Affiliation:
The Children’s Hospital at Westmead, Westmead, NSW, Sydney, Australia
Samuel Ramirez-Marroquin
Affiliation:
Department of Cardiac Surgery, Instituto Nacional de Cardiología Ignacio Chavez, Mexico City, Mexico
Nestor Sandoval
Affiliation:
Department of Cardiac Surgery, Fundacion Abood Shaio, Bogotá, Colombia
Shunji Sano
Affiliation:
Department of Cardiovascular Surgery, Okayama University Hospital, Okayama, Japan
George E. Sarris
Affiliation:
Department of Pediatric and Congenital Heart Surgery, Onassis Cardiac Surgery Centre, Athens, Greece
Rajesh Sharma
Affiliation:
Escorts Heart Institute and Research Center, New Delhi, India
Ayman Shoeb
Affiliation:
Cardiac Surgery, Ain-Shams University, Cairo, Egypt
Thomas L. Spray
Affiliation:
The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, United States of America
Ross M. Ungerleider
Affiliation:
Doernbecher Children’s Hospital, Oregon Health Sciences University, Portland, Oregon, United States ofAmerica
Hervé Yangni-Angate
Affiliation:
Department of Thoracic and Cardiovascular Surgery, Bouake Teaching Hospital, Abidjan, Ivory-Coast, Africa
Gerhard Ziemer
Affiliation:
Department of Thoracic, Cardiac and Vascular Surgery, University of Tubingen, Germany
*
Correspondence to: Christo I. Tchervenkov, MD, Professor of Surgery, McGill University, Director, Cardiovascular Surgery, The Montreal Children’s Hospital, 2300, Tupper Street, Room C-829, Montreal, P.Q., Canada, H3H 1P3. Tel: (514) 412-4400, ext. 22394; Fax: (514) 412-4330; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The diagnosis and treatment for paediatric and congenital cardiac disease has undergone remarkable progress over the last 60 years. Unfortunately, this progress has been largely limited to the developed world. Yet every year approximately 90% of the more than 1,000,000 children who are born with congenital cardiac disease across the world receive either suboptimal care or are totally denied care.

While in the developed world the focus has changed from an effort to decrease post-operative mortality to now improving quality of life and decreasing morbidity, which is the focus of this Supplement, the rest of the world still needs to develop basic access to congenital cardiac care. The World Society for Pediatric and Congenital Heart Surgery [http://www.wspchs.org/] was established in 2006. The Vision of the World Society is that every child born anywhere in the world with a congenital heart defect should have access to appropriate medical and surgical care. The Mission of the World Society is to promote the highest quality comprehensive care to all patients with pediatric and/or congenital heart disease, from the fetus to the adult, regardless of the patient’s economic means, with emphasis on excellence in education, research and community service.

We present in this article an overview of the epidemiology of congenital cardiac disease, the current and future challenges to improve care in the developed and developing world, the impact of the globalization of cardiac surgery, and the role that the World Society should play. The World Society for Pediatric and Congenital Heart Surgery is in a unique position to influence and truly improve the global care of children and adults with congenital cardiac disease throughout the world [http://www.wspchs.org/].

Keywords

Congenital heart diseaseglobalizationoutcomescomplexitycomplicationssurgical outcomesregistrydatabasecardiac surgeryresults of treatment
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue S2: Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease , December 2008 , pp. 63 - 69
Copyright
Copyright © Cambridge University Press 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1.Zupan, J, Aahman, E. Perinatal mortality for the year 2000: estimates developed by WHO. Geneva:World Health Organization, 2005.Google Scholar
2.Lawn, JE, Cousens, S, Zupan, J, et al. 4 million neonatal deaths: When? Where? Why? Lancet 2005; 365: 891–900.CrossRefGoogle ScholarPubMed
3.Kirklin, JW, Barratt-Boyes, BG. Cardiac Surgery, 2nd edition. Churchill-Livingstone, New York, 1993.Google ScholarPubMed
4.WHO: Rheumatic Fever and Rheumatic Heart Disease. WHO technical report series 2004.Google Scholar
5.American Academy of Pediatrics, Committee on Infectious Diseases. 2000 Red Book: Report of the Committee on Infectious Diseases. 25th ed. Pickering LK, (ed.). American Academy of Pediatrics, Elk Grove Village, IL, 2000.Google Scholar
6.Special Program for Research & Training in Tropical Diseases (TDR)-World Health Organization. Chagas Disease 2002. www.who.int/tdr/diseases/chagas/diseaseinfo.htm.Google Scholar
7.Franklin, RCG, Jacobs, JP, Tchervenkov, CI, Béland, M. Report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric 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 (Suppl II): 18–22.CrossRefGoogle Scholar
8.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; 12 (Suppl II): 23–49.Google Scholar
9.Franklin, RCG, Jacobs, JP, Tchervenkov, CI, Béland, M. STS/EACTS Short List mapping to European Paediatric Cardiac Code Short List with ICD-9 & ICD-10 crossmapping. Cardiol Young 2002; 12 (Suppl II): 50–62.Google Scholar
10.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: 425–430.CrossRefGoogle Scholar
11.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: 431–435.CrossRefGoogle Scholar
12.Béland, MJ, Franklin, RCG, Jacobs, JP, et al. Update from The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young 2004; 14: 225–229.CrossRefGoogle Scholar
13.Tchervenkov, CI, Jacobs, JP, Weinberg, PM, et al. The nomenclature, definition and classification of hypoplastic left heart syndrome. Cardiol Young 2006; 16: 339–368.CrossRefGoogle ScholarPubMed
14.Jacobs, JP, Franklin, RCG, Jacobs, ML, et al. Classification of the Functionally Univentricular Heart: Unity from mapped codes. Cardiol Young 2006; 16 (Suppl 1): 9–21.CrossRefGoogle ScholarPubMed
15.Jacobs, JP, Franklin, RCG, Wilkinson, JL, et al. The nomenclature, definition and classification of discordant atrioventricular connections. Cardiol Young 2006; 16 (Suppl 3): 72–84.CrossRefGoogle ScholarPubMed
16.Jacobs, JP, Anderson, RH, Weinberg, P, et al. The nomenclature, definition and classification of cardiac structures in the setting of heterotaxy. Cardiol Young 2007; 17 (Suppl 2): 1–28, doi:10.1017/S1047951107001138.Google ScholarPubMed
17.Jacobs, JP, Mavroudis, C, Jacobs, ML, et al. 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: 18–37.CrossRefGoogle Scholar
18.Jacobs, JP, Maruszewski, B, Tchervenkov, CI, et al. The current status and future directions of efforts to create a global database for the outcomes of therapy for congenital heart disease. Cardiol Young 2005; 15 (Suppl 1): 190–198.CrossRefGoogle ScholarPubMed
19.Jacobs, JP, Jacobs, ML, Maruszewski, B, et al. Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg 2005; 80: 2278–2283; discussion 2283–2284.CrossRefGoogle Scholar
20.Jacobs, JP, Wernovsky, G, Elliott, MJ. Analysis of outcomes for congenital cardiac disease: can we do better? Cardiol Young 2007; 17 (Suppl 2): 145–158, doi:10.1017/S1047951107001278.CrossRefGoogle ScholarPubMed
21.Jacobs, JP, Lacour-Gayet, FG, Jacobs, ML, et al. Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. Ann Thorac Surg 2005; 79: 1635–1649.CrossRefGoogle ScholarPubMed
22.Jonas, RA. Rewards, risks, and responsibilities of globalization for the cardiothoracic surgeon. J Thorac Cardiovasc Surg 2007; 134: 1–14.CrossRefGoogle ScholarPubMed
23.Tchervenkov, CI. Presidential Address: Hearts for life across the World. The World Society News 2007; 1: 6–8.Google Scholar