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Epidemiology and One-Year Follow-Up of Neonates with CDH-Data from Health Insurance Claims in Germany
Boris Wittekindt1, Nora Doberschuetz1, Andrea Schmedding2
1Department of Neonatology, University Hospital, Goethe-University, 60590 Frankfurt, Germany.
Insights
Congenital diaphragmatic hernia (CDH) affects 2.73 per 10,000 births in Germany. Delayed specialized care and extracorporeal membrane oxygenation (ECMO) are linked to higher mortality, emphasizing the need for prompt treatment.
Area of Science:
- Pediatric Surgery
- Neonatology
- Public Health
Background:
- Congenital diaphragmatic hernia (CDH) is a severe birth defect with significant mortality.
- Lack of a dedicated CDH registry in Germany hinders outcome analysis.
Purpose of the Study:
- To analyze incidence, survival, and hospitalization duration for CDH patients in Germany.
- To identify factors influencing CDH patient outcomes.
Main Methods:
- Retrospective analysis of routine data from a large German health insurance fund (2009-2013).
- Inclusion of 285 CDH patients with a 12-month follow-up.
- Comparison of outcomes based on treatment timing and extracorporeal membrane oxygenation (ECMO) use.
Main Results:
- CDH incidence was 2.73 per 10,000 live births.
- Overall mortality was 30.2%, with 72.1% of deaths occurring pre-surgery.
- Delayed specialized care (after day 1) showed 64% mortality; surgical repair improved prognosis (10.8% mortality).
- ECMO treatment (23.5% of patients) had a 41.8% mortality rate.
- Median hospital stay for survivors was 40 days, significantly longer for ECMO patients (91 vs. 32.5 days).
Conclusions:
- This study represents the largest German cohort for CDH with one-year follow-up.
- Delayed treatment and ECMO are associated with increased mortality in CDH.
- Prospective clinical registries are crucial for detailed outcome elucidation and improved CDH management.
Abstract:
Congenital diaphragmatic hernia (CDH) is a major congenital malformation with high mortality. Outcome data on larger unselected patient groups in Germany are unavailable as there is no registry for CDH. Therefore, routine data from the largest German health insurance fund were analyzed for the years 2009-2013. Main outcome measures were incidence, survival and length of hospital stay. Follow-up was 12 months. 285 patients were included. The incidence of CDH was 2.73 per 10,000 live births. Overall mortality was 30.2%. A total of 72.1% of the fatalities occurred before surgery. Highest mortality (64%) was noted in patients who were admitted to specialized care later as the first day of life. Patients receiving surgical repair had a better prognosis (mortality: 10.8%). A total of 67 patients (23.5%) were treated with ECMO with a mortality of 41.8%. The median cumulative hospital stay among one-year survivors was 40 days and differed between ECMO- and non-ECMO-treated patients (91 vs. 32.5 days, p < 0.001). This is the largest German cohort study of CDH patients with a one-year follow-up. The ECMO subgroup showed a higher mortality. Another important finding is that delayed treatment in specialized care increases mortality. Prospective clinical registries are needed to elucidate the treatment outcomes in detail.
