S0382 Delay in Diagnosis for Patients With Eosinophilic Esophagitis: Patient-Reported Barriers

Abstract

INTRODUCTION: Though good treatment options exist with high efficacy rates, a significant delay exists for appropriate diagnosis and treatment of eosinophilic esophagitis (EoE), which can have long-term consequences of esophageal inflammation. This study aimed to describe characteristics and clinical course of patients diagnosed with EoE at one academic institution and to examine patient-reported barriers to timely diagnosis and treatment for EoE. METHODS: Structured phone surveys were conducted among patients aged 18 and older who had been diagnosed with EoE at a large academic institution from January 2017 to March 2020, identified by associated endoscopic diagnosis. Further clinical characteristics including endoscopic findings were extracted from electronic health records. Qualitative evaluation of the open-ended survey questions regarding barriers to diagnosis and treatment included codebook development and thematic analyses. Descriptive statistics were conducted via SAS. RESULTS: Among 106 patients who met inclusion criteria, 41 completed structured phone surveys (age 47 ± 17, 61% male, 88% White). Of the responders, the mean age at symptom onset was 26 (±20) and the mean age at the time of diagnosis was 43 (±20); the calculated average time from symptom onset to seeking medical care was 51 (±80) months, symptom onset to diagnosis of EoE was 73 (±83) months, and symptom onset to treatment was 78 (±83) months. Dysphagia was the most commonly reported presenting symptom (61%), followed by food impaction (39%), reflux (27%), chest pain (10%), and nausea/vomiting (10%). Treatments reported included proton pump inhibitors (75%), inhaled steroids (46%), and food elimination (32%). All had at least one upper endoscopy: 46% of patients had findings of edema, 68% had rings, 37% had exudate, 49% had furrows, and 46% had strictures. Sixteen (39%) required dilation. At the time of survey, 60% reported that their EoE was “well controlled”, 36% “somewhat controlled”, and 5% “not controlled”. Salient themes in patient reported barriers included 1) delay in seeking care due to dismissal of symptoms (49%), 2) need for early referral to specialist/endoscopy (37%), and 3) lack of patient resources/understanding of disease resulting in nonadherence to recommended work-up or treatment (34%). CONCLUSION: Significant diagnostic and treatment delay persists for those with EoE. Patient-centered interventions that target barriers at various levels are needed to prevent long-term consequences.Table 1