Eosinophilic esophagitis (EoE) is a chronic disease with a rising prevalence. Most adult EoE patients experience difficulties eating solid food and therefore they often avoid having meals with friends and family due to their worries about total food bolus obstruction and the need for belching. It’s well known that the time from the start of symptoms to diagnosis is long, often several years because of vague symptoms and the need for endoscopy for diagnosis.

In this recently published, qualitative study twenty-one adult EoE patients from eight different countries were interviewed in an attempt to understand the emotional journey from the pre-seeking care phase to the phase of long-term monitoring. The results showed that patients with EoE go through an exhausting emotional experience during the different stages of the patient journey. In the pre-seeking-care stage, they feel afraid, frustrated, anxious, and also misunderstood. During the diagnostic process, they feel highly frustrated and angry because of the long and burdensome process. When EoE is finally diagnosed, they feel liberated and relieved. ”Relief because I knew what to fight, and I no longer felt guilty. I thought I was the one who could not swallow; I believed I was the problem.”

When treatment is initiated, patients feel relief and enthusiasm, and, once the treatment starts to be effective, they feel happier, less stressed, more confident, and in control owing to the improvement of their symptoms. In the same time, they experience concerns and worries over the uncertainty of the disease's progression and symptoms in the future.

As a result of the high emotional burden of EoE, more than half of the patients sought help from a psychologist or a related health care provider.

Conclusions: This study highlights the importance of considering and care for the emotional impact among EoE patients and the need to increase the awareness of EoE among physicians and the general public.

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