Emotional Journey of Patients with Eosinophilic Esophagitis

Abstract

Introduction: Eosinophilic esophagitis (EoE) is a chronic and progressive disease associated with dysphagia and eosinophilic infiltration of the esophageal mucosa. EoE can have a negative impact on a patient's quality of life (QoL); however, there is very limited data reflecting the emotional journey of patients with EoE or their perceived unmet needs. The aim of this study was to determine the emotional impact of EoE on patients at each stage of the patient journey.

Methods: In this cross-sectional and qualitative research study, adult patients with EoE from eight different countries provided their experiences and feelings across each stage of the patient journey through one-on-one semi-structured interviews.

Results: Twenty-one patients with EoE were enrolled in the study. The results of the one-on-one interviews showed that patients living with EoE go through an exhausting emotional experience during the different stages of the patient journey. In the pre-seeking-care stage, patients feel confused, afraid, frustrated, anxious, lonely, and misunderstood. During the diagnostic process, patients feel highly frustrated and angry because of the long and burdensome process. When EoE is finally diagnosed, patients feel liberated and relieved. When treatment is initiated, patients feel relief and enthusiasm, and, once the treatment starts to be effective and during the monitoring stage, they feel happier, less stressed, more confident, more relaxed, less fearful, and more in control owing to the improvement of their symptoms.

Conclusions: This study pays attention to the different stages of the journey of patients with EoE. There is a lack of awareness by both physicians and patients that negatively affects every stage of the patient journey, but especially the initial phases of pre seeking care and diagnosis. We intend for this article to represent an opportunity to increase EoE awareness and to show the importance of considering the emotional impact on a patient with EoE's journey.

Keywords: Emotional journey; Eosinophilic esophagitis; Patient journey; Quality of life.

Fig. 1

First symptoms of EoE in the pre-seeking-care stage. More than one symptom could have been selected for each

Fig. 2

Emotions experienced by patients with the onset of the first symptoms of EoE. More than one emotion could have been selected for each

Fig. 3

Aspects of the daily life of patients most affected by EoE symptoms during the pre-seeking-care stage

Fig. 4

Percentage of therapies prescribed for the treatment of EoE. More than one therapy could have been selected for each patient

Fig. 5

Emotional journey of patients with EoE