Accurate and timely diagnosis of Eosinophilic Esophagitis improves over time in Europe. An analysis of the EoE CONNECT Registry

Abstract

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.

Modifying the natural history of gastrointestinal diseases in Europe as a result of early diagnosis: From eosinophilic esophagitis to inflammatory bowel disease

“…Undoubtedly, the present study from Navarro and colleagues 10 provides an optimistic compelling proof on how resources spent on educational initiatives and disease awareness for secondary prevention may result in significant improvements in the disease course and patients' lives. However, this kind of initiatives may still be insufficient for complex disorders like IBD.…”

“…In this issue of the United European Gastroenterology (UEG) Journal, Navarro and colleagues provide a clear answer through a detailed analysis of the EoE CONNECT database. 10 The aforementioned results observed in EoE resemble some aspects also found in inflammatory bowel disease (IBD). Both are immune-mediated diseases, leading to chronic structural damage of the gastrointestinal tract, with a peak incidence in young adults.…”

“…In this issue of the United European Gastroenterology (UEG) Journal, Navarro and colleagues provide a clear answer through a detailed analysis of the EoE CONNECT database. 10 Briefly, this project comprises a prospectively‐maintained registry, formerly promoted by the UEG as a part of the Link Award program “Harmonizing diagnosis and therapy of Eosinophilic Oesophagitis across Europe (HaEoE‐EU)”, later transferred in 2016 to EUREOS, the European Consortium for Eosinophilic Diseases of the GI Tract. After analyzing 1132 patients from Spain, Italy, Denmark, and France, the authors demonstrate a dramatic reduction in diagnostic delay for EoE, from 12.7 years (before 2007, when no guideline was available) down to 0.7 years (after publication of the last set of guidelines in 2017, 1 endorsed by the UEG).…”

“…At this point, the next question would be whether these potential complications might be minimized with increasing awareness leading to early diagnosis. In this issue of the United European Gastroenterology (UEG) Journal, Navarro and colleagues provide a clear answer through a detailed analysis of the EoE CONNECT database 10 . Briefly, this project comprises a prospectively‐maintained registry, formerly promoted by the UEG as a part of the Link Award program “Harmonizing diagnosis and therapy of Eosinophilic Oesophagitis across Europe (HaEoE‐EU)”, later transferred in 2016 to EUREOS, the European Consortium for Eosinophilic Diseases of the GI Tract.…”

UEG week and UEG journal: A strong scientific liaison

“…In a cross‐sectional analysis of the international EoE CONNECT registry of EoE, Navarro et al investigated whether the diagnostic process of EoE was effectively improved by release of such guidelines. Interestingly, they found that duration of diagnostic process, percentage of patients with strictures at diagnosis, and severity of disease as assessed by patient‐reported Dysphagia Symptoms Score, were all significantly improved, 10 thus indicating that the European collaborative guidelines on EoE had a major positive impact on the management of these patients.…”