Accurate and timely diagnosis of Eosinophilic Esophagitis improves over time in Europe. An analysis of the EoE CONNECT Registry
Pilar Navarro 1 2 3 , Emilio J Laserna-Mendieta 1 2 3 4 , Sergio Casabona 2 5 , Edoardo Savarino 6 , María Teresa Pérez-Fernández 2 5 , Matteo Ghisa 6 , Isabel Pérez-Martínez 7 8 , Danila Guagnozzi 9 10 , Antonia Perelló 11 , Antonio Guardiola-Arévalo 12 , Francesca Racca 13 , Elena Betoré 14 , Leonardo Blas-Jhon 15 , Anne Lund Krarup 16 , Verónica Martín-Domínguez 2 5 , Daria Maniero 6 , Adolfo Suárez 7 8 , Ronald Llerena-Castro 9 , Luisa de la Peña-Negro 11 , Alicia Granja Navacerrada 12 , Gaia Pellegatta 17 , Javier Alcedo 14 , Lonore de Hurtado Mendoza-Guena 15 , Sara Feo-Ortega 4 18 , Jesús Barrio 19 , Carolina Gutiérrez-Junquera 20 , Sonia Fernández-Fernández 21 , Susana De la Riva 22 , Juan E Navés 23 , Silvia Carrión 10 24 , Constanza Ciriza de Los Ríos 25 26 , Natalia García-Morales 27 , Juan Armando Rodríguez-Oballe 28 , Raffaela Dainese 29 , Alba Rodríguez-Sánchez 30 , María Lluisa Masiques-Mas 31 , María Teresa Palomeque 32 , Cecilio Santander 2 5 10 , Sonsoles Tamarit-Sebastián 1 3 , Ángel Arias 2 4 10 33 , Alfredo J Lucendo 1 2 3 10
Background: Poor adherence to clinical practice guidelines for eosinophilic esophagitis (EoE) has been described and the diagnostic delay of the disease continues to be unacceptable in many settings.
Objective: To analyze the impact of improved knowledge provided by the successive international clinical practice guidelines on reducing diagnostic delay and improving the diagnostic process for European patients with EoE.
Methods: Cross-sectional analysis of the EoE CONNECT registry based on clinical practice. Time periods defined by the publication dates of four major sets of guidelines over 10 years were considered. Patients were grouped per time period according to date of symptom onset.
Results: Data from 1,132 patients was analyzed and median (IQR) diagnostic delay in the whole series was 2.1 (0.7-6.2) years. This gradually decreased over time with subsequent release of new guidelines (p < 0.001), from 12.7 years up to 2007 to 0.7 years after 2017.
The proportion of patients with stricturing of mixed phenotypes at the point of EoE diagnosis also decreased over time (41.3% vs. 16%; p < 0.001), as did EREFS scores. The fibrotic sub-score decreased from a median (IQR) of 2 (1-2) to 0 (0-1) when patients whose symptoms started up to 2007 and after 2017 were compared (p < 0.001). In parallel, symptoms measured with the Dysphagia Symptoms Score reduced significantly when patients with symptoms starting before 2007 and after 2012 were compared.
A reduction in the number of endoscopies patients underwent before the one that achieved an EoE diagnosis, and the use of allergy testing as part of the diagnostic workout of EoE, also reduced significantly over time (p = 0.010 and p < 0.001, respectively).
Conclusion: The diagnostic work-up of EoE patients improved substantially over time at the European sites contributing to EoE CONNECT, with a dramatic reduction in diagnostic delay.