Abstract

Abstract Background Arrhythmias are a major contributor to morbidity and mortality in adult patients with congenital heart disease (ACHD). Advances in ablation technology have contributed to improved management and reduction of symptoms in this population. However, only limited data exist on the use and outcome of these technologies in large community-based cohorts of ACHD patients and on the impact of specialized centres on recurrence of arrhythmias. Purpose We performed a retrospective analysis based on data from one of the largest German Health Insurance Companies (approx. 9 million insured members), acquiring real-world data on frequency of invasive electrophysiological studies (EPS) in Germany between 2005 and 2018. ACHD patients were identified based on ICD codes and the spectrum of disease as well as the impact of EPS being performed at specialized ACHD centres was analysed. Results Out of 45,761 eligible ACHD patients in the database, we identified 2,433 EPS performed in 1,706 ACHD (51% female, median age 55.4 years, complexity of CHD mild, moderate and severe in 50.6%, 33.2%,16.2%, respectively). Over the study period the annual number of EPS increased by 207%. The majority of procedures were for supraventricular tachycardias (85.9%). Of these procedures atrial fibrillation accounted for 35.1%, atrial flutter for 29.4% and other supraventricular tachycardias/pre-excitation syndromes for 29.9% of cases. The majority of EPS (64.3%) was performed at non-specialized centres including 40.2% of cases in patients with complex disease. Overall, the re- intervention rate within 12 months of the primary EPS was 14.5%. Whereas in ACHD patients with simple and moderate complexity disease no obvious difference in 12-months re- intervention rate was observed between specialized and non-specialised centres (15.5% vs. 15.0%), in patients with complex disease the reintervention rate was 41.6% higher for non-specialized centres (13.6% vs. 9.6%). Conclusion Our large real- world analysis shows an increasing need for invasive electrophysiological studies in ACHD patients. The vast majority of procedures was performed for supraventricular arrhythmias including in atrial fibrillation and flutter ablation. Re-interventions were frequently required in this unique and anatomically challenging population. Alarmingly, many procedures were performed at non-specialized centres, although current guidelines recommend that interventions in complex patients should remain reserved for experienced high-volume centres. Funding Acknowledgement Type of funding source: None

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