Advances in Therapy · 3 authors, 4 centres
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A cross-sectional qualitative study of 21 adult EoE patients from eight countries found that patients endure an exhausting emotional journey through four stages of care—ranging from confusion and frustration before diagnosis to relief and increased confidence once treatment becomes effective.
This cross-sectional qualitative study enrolled 21 adult patients with EoE from eight countries who underwent semi-structured one-on-one interviews exploring emotions across four patient journey stages: pre-seeking care, diagnosis, treatment/follow-up, and monitoring. Thematic content analysis was used for qualitative data. In the pre-seeking-care stage, patients felt confused, afraid, frustrated, anxious, lonely, and misunderstood. The diagnostic process was described as long and burdensome, with a mean time from first medical consultation to diagnosis of 7.3 years (range 1 month to 20 years). At diagnosis, patients felt liberated and relieved. During treatment and monitoring, patients reported feeling happier, less stressed, more confident, and more in control. All four patients receiving biological treatments expressed high satisfaction. More than half of patients sought psychological support. Key limitations include the small sample size, qualitative design limiting quantitative generalizability, and potential non-representativeness of the broader EoE population.
