CC BY-NC-ND 4.0 · Thorac Cardiovasc Surg 2022; 70(S 03): e21-e33
DOI: 10.1055/s-0042-1757175
Pediatric and Congenital Cardiology

German Registry for Cardiac Operations and Interventions in Patients with Congenital Heart Disease: Report 2021 and 9 Years' Longitudinal Observations on Fallot and Coarctation Patients

Sven Dittrich 
1   Department of Pediatric Cardiology, Friedrich-Alexander-Universitat Erlangen-Nurnberg, Erlangen, Germany
,
Claudia Arenz
2   Department of Pediatric Heart Surgery, University of Bonn, Bonn, Germany
,
Otto Krogmann
3   Clinic for Pediatric Cardiology – Congenital Heart Defects, Heart Center Duisburg, Duisburg, Germany
,
Anja Tengler
4   Department of Pediatric Cardiology and Intensive Care, Ludwig-Maximilians-Universitat Munich, Munich, Germany
,
Renate Meyer
5   BQS Institute for Quality and Patient Safety, Hamburg, Germany
,
Ulrike Bauer
6   National Register for Congenital Heart Defects, Berlin, Germany
,
Michael Hofbeck
7   Department of Pediatric Cardiology, Pulmology and Intensive Care, University Children's Hospital, Tübingen, Germany
,
Andreas Beckmann
8   German Society for Thoracic and Cardiovascular Surgery, Berlin, Germany
,
Alexander Horke
9   Division of Congenital Heart Surgery, Hannover Medical School, Hannover, Germany
› Author Affiliations Funding The responsible bodies for the registry are the German Society for Thoracic and Cardiovascular Surgery and the German Society for Pediatric Cardiology and Congenital Heart Defects. The registry receives financial support by all participating institutions and for the years 2012–2016 from the German Heart Foundation (Deutsche Herzstiftung).
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Abstract

Background The annual report of the German Quality Assurance of Congenital Heart Disease displays a broad overview on outcome of interventional and surgical treatment with respect to patient's age and risk categorization. Particular features of the German all-comers registry are the inclusion of all interventional and surgical procedures, the possibility to record repeated treatments with distinct individual patient assignment, and to record various procedures within one case.

Methods International Pediatric and Congenital Cardiac Code terminology for diagnoses and procedures as well as classified adverse events, also recording of demographic data, key procedural performance indicators, and key quality indicators (mortality, adverse event rates). Surgical and interventional adverse events were classified according to the Society of Thoracic Surgeons and to the Congenital Heart Disease Adjustment for Risk Method of the congenital cardiac catheterization project on outcomes. Annual analysis of all cases and additional long-term evaluation of patients after repair of Fallot and primary treatment of native coarctation of the aorta were performed.

Results In 2020, 5,532 patients with 6,051 cases (hospital stays) with 6,986 procedures were treated in 23 German institutions. Cases dispense on 618 newborns (10.2%), 1,532 infants (25.3%), 3,077 children (50.9%), and 824 adults (13.6%). Freedom from adverse events was 94.5% in 2,795 interventional cases, 67.9% in 2,887 surgical cases, and 42.9% in 336 cases with multiple procedures (without considering the 33 hybrid interventions). In-hospital mortality was 0.5% in interventional, 1.6% in surgical, and 5.7% in cases with multiple treatments. Long-term observation of 1,632 patient after repair of Fallot depicts the impact of previous palliation in 18% of the patients on the rate of 20.8% redo cases. Differentiated analysis of 1,864 patients with native coarctation picture clear differences of patient, age, and procedure selection and outcome. The overall redo procedure rate in this patient population is high with 30.8%.

Conclusion Improvement in quality of care requires detailed analysis of risks, performance indicators, and outcomes. The high necessity of redo procedures in patients with complex congenital heart disease underlines the imperative need of long-term observations.

Keywords

congenital heart disease - outcomes - multicenter registry - risk categorization - pediatric cardiology - congenital heart surgery - transcatheter intervention - Fallot - coarctation

Collaborators

German Quality Assurance/Competence Network for Congenital Heart Defects Investigators:


Gunter Kerst, Majed Kanaan, Stefan Ostermayer, Jaime F. Vazquez-Jimenez (Aachen); Stephan Schubert, Kai Thorsten Laser, Eugen Sandica (Bad Oeynhausen); Felix Berger, Oliver Miera, Joachim Photiadis, Bernd Opgen-Rhein (Berlin); Johannes Breuer, Ulrike Herberg, Nicole Müller, Martin Schneider, Boulos Asfour (Bonn); Gleb Tarusinov, Jochen Börgermann, Michael Scheid (Duisburg); Wolfgang Wällisch, Ariawan Purbojo (Erlangen); Brigitte Stiller, Christoph Zürn, Fatos Ballazhi, Friedhelm Beyersdorf, Fabian Alexander Kari, Johannes Kroll, Matthias Siepe (Freiburg); Christian Jux, Andreas Böning, Hakan Akintürk (Gießen); Thomas Paul, Matthias Sigler, Ulrich Krause, Tim Attmann, Ingo Kutschka, Theodor Tirilomis (Göttingen); Rainer Kozlik-Feldmann, Carsten Rickers, André Rüffer, Jörg Sachweh, Hermann Reichenspurner (Hamburg); Philipp Beerbaum, Axel Haverich, Dietmar Böthig (Hannover); Matthias Gorenflo, Matthias Karck, Tsvetomir Loukanov (Heidelberg); Hashim Abdul- Khaliq, Julianna Olchvary, Hans-Joachim Schäfers (Homburg); Thomas Kriebel (Kaiserslautern); Anselm Uebing, Gunther Fischer, Joachim Thomas Cremer, Jens Scheewe (Kiel); Ingo Dähnert, Michael A. Borger, Martin Kostelka (Leipzig); Jürgen Hörer, Nikolaus A. Haas (LMU München); Hans-Gerd Kehl, Felix Kleinerüschkamp, Edward Malec, Sven Martens, Helmut Baumgartner (Münster); Matthias W. Freund, Oliver Dewald (Oldenburg); Frank Uhlemann, Ioannis Tzanavaros (Stuttgart); Jörg Michel, Christian Schlensak (Tübingen).


Participating Centers in 2020

Aachen; Bad Oeynhausen; Bonn; Berlin (DHZB & Charité), Duisburg; Erlangen; Freiburg/Bad Krozingen; Gießen; Göttingen; Hamburg; Hannover; Heidelberg; Homburg; Kaiserslautern; Kiel; Leipzig; München (LMU); Münster; Oldenburg; Stuttgart; Tübingen.




Publication History

Received: 12 May 2022

Accepted: 30 July 2022

Article published online:
29 September 2022

© 2022. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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