S1681 Nonadherence in Pediatric Eosinophilic Esophagitis

Introduction: Eosinophilic Esophagitis (EoE) is a chronic esophageal condition represented by symptoms and inflammation. While the diagnosis of EoE is increasing, attention is required as to how patients are followed including adherence to treatment. Methods: Our EoE registry was reviewed which collected clinical, endoscopic, and histologic data over 10 years (2012-2022) about pediatric EoE patients seen in the multidisciplinary EoE clinic at BC Children’s Hospital, Vancouver, Canada. Consent was obtained from patients/families. Results: Over 10 years, 247 EoE patients were part of the EoE registry. The median age at first visit was 10.5 years and the majority of patients were white and male. The median length of follow up was 3 years (IQR 1.1-5.8) with 6 clinic visits (IQR 3-10). While the median number of endoscopies per patient (IQR 2-5) was 3, 19% of patients only had one (diagnostic) endoscopy with no follow up endoscopy. During follow up visits, 56% of patients were reported to be on medical treatment, 36.2% on dietary treatment, and 18.3% of patients on no treatment. Of the patients prescribed PPI – 2.3% were not taking the medication at all, and 55.5% were missing some doses (either “often, sometimes or seldomly”). With the swallowed topical corticosteroid (STC) (Fluticasone / OVB) 54.7% patients were taking it less regularly than prescribed, with 4.2% (n=9) not taking it all. The most common reason for not taking the medication consistently was forgetfulness for PPI and perceived side effects for STC. With regards to empiric dietary elimination, 7.6% of those said to be on dietary treatment were consuming that specific product on a daily basis. At the most recent endoscopy, 60.9% were demonstrating active disease (≥15 eos/hpf). Conclusion: This real-life pediatric cohort of EoE patients over a decade demonstrates that engagement and adherence is a real problem. It shows that 1 in 5 are not coming back for repeat endoscopy after diagnosis even when there is no cost to the procedure. Also ∼1 in 5 in follow-up are on no treatment which influences the chance of achieving histologic remission. The majority of our patients struggle with adherence even when they have agreed to a medication or a diet regimen. Clinicians need to work with the patients and families in a non-judgemental fashion to explain the chronic condition including treatment options, evaluate and document treatment adherence and work with them to reduce barriers whenever possible.