Sydney F Pomenti, Elina Stoffel, Alexa Choy, Emma Fanuele, Nirmala Gonsalves, Evan S Dellon, David A Katzka
Among international experts, most referred EoE patients labelled as refractory had received suboptimal medical and dilation therapy. This highlights opportunities to optimize care along guideline recommendations prior to referral.
BACKGROUND & AIMS: Eosinophilic esophagitis (EoE) patients deemed treatment-refractory are frequently referred to tertiary centres. We aimed to characterize expert perspectives on patients referred for refractory EoE, including its causes, prevalence, and evaluation.
METHODS: We conducted an anonymous and blinded cross-sectional survey of international EoE experts (n = 52) assessing provider characteristics, referral patterns, perceived causes of treatment failure, diagnostic approaches, and prior therapies. Descriptive statistics and subgroup analyses were performed.
RESULTS: Respondents were predominantly gastroenterologists (77%) and practiced in academic settings (87%) with high EoE volume. Experts estimated that true refractoriness to medical and diet therapy was 15% [IQR 10-25], median 31% [20-50], respectively. Patients referred for perceived refractory EoE had been treated with PPIs (80%), topical steroids (55%), and elimination diets (45%); dupilumab (10%) was infrequently trialled. Half of the patients referred had been on combination therapy. After referral, experts focused on assessing medication adherence (98%), dosing (92%), and administration technique (90%), with most repeating endoscopy (85%) and performing oesophageal dilation (42%). The causes of perceived refractory disease were subtherapeutic dosing (34%), incorrect medication administration (30.5%), inappropriate medication choice (26.5%), and dietary non-adherence (26%). Functional and behavioural contributors including co-existing oesophageal hypersensitivity (20%), ARFID (9%), and rumination syndrome (5%) were also reported. Experience in treating EoE patients assessed by less than or greater than 10 years did not affect most results.
CONCLUSIONS: Among international experts, most referred EoE patients labelled as refractory had received suboptimal medical and dilation therapy. This highlights opportunities to optimize care along guideline recommendations prior to referral.