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Oral Presentation - 38
Are national guidelines for the care pathway of esophageal atresia being followed during the first year of life ?
M Pruche*, A Lapillonne**, M Antoine*, A Bonnard***, N Caron****, N Panait*****, S Irtan******, T Lamireau*******, D Forgues********, I Talon*********, A Le Mandat**********, V Fouquet***********, A Guinot************, C Jacquier*************, N Berte**************, L Bridoux-Henno***************, F Elbaz****************, F Laconi*****************, J Michel******************, C Borderon*******************, H Lardy********************, A Haffreingue*********************, M François**********************, F Schmitt***********************, P Buisson************************, J Lecompte*************************, D Potop**************************, F Auber***************************, I Cousin****************************, C Tölg*****************************, C Crémillieux******************************, M Pouzac*******************************, A Nicolas********************************, C Pelatan*********************************, O Jaby**********************************, C Ternynck*, R Sfeir*, F Gottrand*, M Aumar*
*Lille University Hospital, Lille, France
**University Hospital of APHP Necker-Enfants Malades, Paris, France
***University Hospital of APHP Robert Debré, Paris, France
****University Hospital of HCL Lyon, Lyon, France
*****University Hospital of Marseille, Marseille, France
******University Hospital of APHP Armand Trousseau, Paris, France
*******University Hospital of Bordeaux, Bordeaux, France
********University Hospital of Montpellier, Montpellier, France
*********University Hospital of Strasbourg, Strasbourg, France
**********University Hospital of Toulouse, Toulouse, France
***********University Hospital of APHP Kremlin Bicêtre, Paris, France
************University Hospital of Nantes, Nantes, France
*************University Hospital of Grenoble Alpes, Grenoble, France
**************University Hospital of Nancy, Nancy, France
***************University Hospital of Rennes, Rennes, France
****************University Hospital of Rouen, Rouen, France
*****************University Hospital of Reims, Reims, France
******************University Hospital of La Réunion, Saint Denis de la Réunion, France
*******************University Hospital of Clermont-Ferrand, Clermont-Ferrand, France
********************University Hospital of Tours, Tours, France
*********************University Hospital of Caen, Caen, France
**********************University Hospital of Dijon, Dijon, France
***********************University Hospital of Angers, Angers, France
************************University Hospital of Amiens, Amiens, France
*************************University Hospital of Nice, Nice, France
**************************University Hospital of Poitiers, Poitiers, France
***************************University Hospital of Besançon, Besançon, France
****************************University Hospital of Brest, Brest, France
*****************************University Hospital of Fort De France, Martinique, France
******************************University Hospital of Saint-Etienne, Saint-Etienne, France
*******************************University Hospital of Orléans, Orléans, France
********************************University Hospital of Limoges, Limoges, France
*********************************Hospital of Le Mans, Le Mans, France
**********************************Hospital of Créteil, Créteil, France
Purpose: As part of the National Rare Disease Plan, a formal surveillance and care pathway was established in 2008 and updated in 2018 within the national network of the 33 expert centers for esophageal atresia (EA). This study aimed to evaluate the practical implementation of the updated care pathway during the first year of life and to identify the challenges and factors associated with non-compliance.
Method: We conducted a multicenter, retrospective study using data from the French National Esophageal Atresia Registry (RENATO). Children undergoing EA surgery between January 1, 2016, and December 31, 2021, were included, excluding those who died within their first year. Patients born before and after January 1, 2019 were compared regarding adherence to key recommendations: prenatal evaluation (e.g., fetal MRI, amniocentesis, digestive enzyme assays) and antenatal consultation, preoperative tracheoscopy, systematic proton pump inhibitor (PPI) during the first year, systematic follow up visit at 6 and 12 months, tailored nutritional management and influenza vaccination.
Results: A total of 947 children were included: 480 born before and 467 after January 1, 2019. Among the seven main recommendations analysed, only preoperative tracheoscopy showed significant improvement after the update (50.2% before vs 65.8% after, p < 0.001). Adherence to PPI prescriptions was consistently high (95.7% before vs 98.5% after, p = 0.013). A case-load effect was observed, with hospital managing fewer cases annually (≤10 cases/year) showing poorer adherence compared to high-volume centers (>10 cases). Discrepancies affected preoperative tracheoscopy, prenatal evaluation, and follow-up visits at 6 and 12 months.
Conclusion: The updates care pathway moderately improved adherence to EA care guidelines, particularly for preoperative tracheoscopy. However, other recommendations remain insufficiently implemented, especially in low-volume centers. The observed disparities underline the importance of addressing caseload effects to improve care consistency, and optimize follow-up in this vulnerable population.