Gold BD, Goodwin B, Davis K, Sweeney C, Ziemiecki R, Jiang J, Fan T, Boules M, Chen ST, Katzka DA. Satisfaction with and adherence to off-label corticosteroids in adolescents and adults with eosinophilic esophagitis: results of a web-based survey in the United States. J Clin Gastroenterol. 2025 Feb;59(2):138-46. doi: 10.1097/MCG.0000000000002006

GOALS: We assessed satisfaction with and adherence to off-label corticosteroids in patients with eosinophilic esophagitis (EoE) in the United States.

BACKGROUND: EoE is a chronic inflammatory disease, for which there are currently no US Food and Drug Administration-approved swallowed topical corticosteroids.

STUDY: This non-interventional, cross-sectional, web-based survey included caregivers of adolescents (aged 11-17 years) and adults (aged ≥ 18 years) with a self-reported (or caregiver-reported [adolescents]) physician diagnosis of EoE who were receiving corticosteroids. Participants were recruited via 2 non-profit, patient advocacy groups. The 9-item Treatment Satisfaction Questionnaire for Medication (TSQM-9) was used to assess satisfaction across effectiveness, convenience, and global satisfaction domains (scale: 1-100 per domain); higher scores indicated greater satisfaction. The 4-item Morisky Green Levine Medication Adherence Scale (MGL-4) was used to assess adherence; an MGL-4 score of < 3 indicated adherence. Participants also reported reasons for non-adherence.

RESULTS: Overall, 201 participants (caregivers of adolescents, n = 98; adults, n = 103) were included in this study. Mean TSQM-9 scores indicated low satisfaction with off-label corticosteroids across all 3 satisfaction domains in adolescents (≤ 61.1) and adults (≤ 55.7). Slightly fewer adolescents (37.1%) than adults (40.8%) were considered adherent. Forgetfulness was the most frequently reported reason for non-adherence; some patients chose not to take their medications, owing to poor palatability (adolescents), difficulty taking medications at specific times (adults), or feeling depressed/overwhelmed (adolescents and adults).

CONCLUSIONS: Satisfaction with and adherence to off-label corticosteroids were low in this web-based survey of adolescents and adults with EoE in the United States.