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Oral Presentation - 37
Are national guidelines for the care pathway of esophageal atresia being followed during the first year of life ?
Mélanie Pruche 1, Alexandre Lapillonne 2, Matthieu Antoine 1, Arnaud Bonnard 3, Nicolas Caron 4, Nicoleta Panait 5, Sabine Irtan 6, Thierry Lamireau 7, Dominique Forgues 8, Isabelle Talon 9, Aurélie Le Mandat 10, Virginie Fouquet 11, Audrey Guinot 12, Catherine Jacquier 13, Nicolas Berte 14, Laure Bridoux-Henno 15, Frédéric Elbaz 16, Francesco Laconi 17, Jean-Luc Michel 18, Corinne Borderon 19, Hubert Lardy 20, Aurore Haffreingue 21, Michel François 22, Françoise Schmitt 23, Philippe Buisson 24, Jean-François Lecompte 25, Diana Potop 26, Frédéric Auber 27, Ianis Cousin 28, Cécilia Tölg 29, Clara Crémillieux 30, Myriam Pouzac 31, Audrey Nicolas 32, Cécile Pelatan 33, Olivier Jaby 34, Camille Ternynck 1, Rony Sfeir 1, Frédéric Gottrand 1, Madeleine Aumar 1
1 Lille University Hospital, Lille, France
2 University Hospital of APHP Necker-Enfants Malades, Paris, France
3 University Hospital of APHP Robert Debré, Paris, France
4 University Hospital of HCL Lyon, Lyon, France
5 University Hospital of Marseille, Marseille, France
6 University Hospital of APHP Armand Trousseau, Paris, France
7 University Hospital of Bordeaux, Bordeaux, France
8 University Hospital of Montpellier, Montpellier, France
9 University Hospital of Strasbourg, Strasbourg, France
10 University Hospital of Toulouse, Toulouse, France
11 University Hospital of APHP Kremlin Bicêtre, Paris, France
12 University Hospital of Nantes, Nantes, France
13 University Hospital of Grenoble Alpes, Grenoble, France
14 University Hospital of Nancy, Nancy, France
15 University Hospital of Rennes, Rennes, France
16 University Hospital of Rouen, Rouen, France
17 University Hospital of Reims, Reims, France
18 University Hospital of La Réunion, Saint Denis de la Réunion, France
19 University Hospital of Clermont-Ferrand, Clermont-Ferrand, France
20 University Hospital of Tours, Tours, France
21 University Hospital of Caen, Caen, France
22 University Hospital of Dijon, Dijon, France
23 University Hospital of Angers, Angers, France
24 University Hospital of Amiens, Amiens, France
25 University Hospital of Nice, Nice, France
26 University Hospital of Poitiers, Poitiers, France
27 University Hospital of Besançon, Besançon, France
28 University Hospital of Brest, Brest, France
29 University Hospital of Fort De France, Martinique, France
30 University Hospital of Saint-Etienne, Saint-Etienne, France
31 University Hospital of Orléans, Orléans, France
32 University Hospital of Limoges, Limoges, France
33 Hospital of Le Mans, Le Mans, France
34 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.