Follow-up and transition practices in esophageal atresia: a review of European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) centres and affiliates.

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 investigatio

SUBMITTER: Durkin N 

PROVIDER: S-EPMC11550284 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature