Time to Diagnosis Among Patients With Eosinophilic Esophagitis: An Early Cohort Study in the US-Based Target-EGIDs Consortium

OBJECTIVES: Patients with eosinophilic esophagitis (EoE), a chronic, type 2 inflammatory disease, often experience delays in diagnosis, possibly attributed to variable symptoms at presentation. This real-world analysis describes the demographics, EoE-related symptoms or complications, and time from symptom onset on establishing a new diagnosis of EoE.

METHODS: Structured data from electronic health records (EHRs) of the TARGET-EGIDs community consortium were analyzed. A single academic center cohort of 906 patients with EoE and no other eosinophilic gastrointestinal diseases (EGIDs) was extracted, including 602 newly diagnosed patients. Eligible patients were those with an ICD-10 diagnosis code (K20.0) occurring on or after their first visit documented between 3/20/2018 and 8/14/2023, and without concomitant EGIDs (K52.81, 52.82). EoE-related symptoms or complications occurring prior to EoE diagnosis were identified, and median time (interquartile range [IQR]) from first symptom or complication to EoE diagnosis was calculated. Statistics were descriptive.

RESULTS: Of 602 newly diagnosed patients with EoE, most were male (58%), White (92%) with mean age 41.6 years (SD,15.6) at EoE diagnosis. Prior to diagnosis, 81% had ≥1 documented EoE-related symptoms or complications. The median (IQR) time from the EoE-related symptoms to diagnosis was 15.9 (7.0–60.7) weeks for dysphagia, 74.0 (19.1–182.9) weeks for chest pain, and 86.7 (11.6–102.9) weeks for heartburn. In addition, the median (IQR) time from the EoE-related complications to diagnosis was 6.7 (1.7–18.0) weeks for food impaction, 9.1 (2.9–43.7) weeks for esophageal stricture, and 30.6 (14.1–132.5) weeks for esophageal perforation.

CONCLUSIONS: Despite the limitation of using only structured EHR data that results in underestimating the timing of the first symptom or complication, patients with EoE experience significant variation and lengthy times to diagnosis. Prompt diagnosis is critical to alleviate the burden of EoE and to expedite appropriate treatment, necessitating further research into factors causing delays in diagnosis.