Follow-up and transition practices in esophageal atresia: a review of European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) centres and affiliates
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In brief
In brief
This survey of 29 European centers reveals significant variability in esophageal atresia follow-up practices, with only two-thirds offering dedicated multidisciplinary clinics and 55% having transition pathways. Resource limitations and poor awareness of existing ERNICA/ESPGHAN guidelines contribute to inconsistent care delivery across the network.
- Two-thirds of ERNICA centers have dedicated EA clinics with MDT, but 40% restrict access to complex cases only due to resource constraints.
- Routine investigation protocols vary widely; only 24% of centers provide the recommended three endoscopies during follow-up.
- Just 55% of centers have formal transition pathways, with ERNICA members significantly outperforming affiliates (81% vs 30%).
- Awareness of ESPGHAN and ERNICA follow-up guidelines is poor at 28%, contributing to non-uniform care delivery across Europe.
- Resource limitations are the primary barrier (67%) preventing centers from establishing comprehensive MDT follow-up clinics.
Written by the GCMD Library team from the article.
Abstract
Purpose
The purpose of this study was to understand the provision and distribution of esophageal atresia (EA) follow-up (FU) and transition services across European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) member and affiliate centers.
Methods
A REDCap questionnaire was sent to clinical leads of 18 ERNICA members and 14 affiliate centers.
Results
29 of 32 centers responded (91%), the majority of which were highly specialized. Two-thirds had a dedicated EA clinic with a specialist multi-disciplinary team (MDT), offered to selected/complex patients only in 40% of centers. ERNICA centers were more likely to offer an MDT FU clinic than affiliates, with lack of resources most cited as a barrier to uptake (67%). Delivery of routine investigations was heterogeneous, particularly provision of three endoscopies over the course of FU (24%). Only 55% had a dedicated transition pathway, more prevalent in ERNICA centers (81% vs. 30%; p < 0.01). Self-reported awareness of ERNICA and European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) guidance for FU and transition was poor (28%).
Conclusion
Despite the existence of European follow-up and transition guidelines, their delivery is not uniform and may be limited by lack of awareness of the guidelines and a lack of resources.