Qualitative assessment of patient-reported outcomes in adults with eosinophilic esophagitis

Goals: This study aims to qualitatively describe experiences of adult patients diagnosed with eosinophilic esophagitis (EoE). Specifically, we aim to identify disease-specific concerns related to patient-reported outcomes in this population to inform clinical care and assessment. Background: EoE is a chronic inflammatory disease of the esophagus and is increasingly recognized as a cause of dysphagia in adults. On the basis of its symptoms, limited and restrictive treatment options and potential for social and psychological impact, it is logical to expect that the health related quality of life of EoE patients would be an important outcome marker for assessment. Study: Twenty-four EoE patients participated in semistructured interviews about their illness experiences. Participants also provided demographic and clinical data, and completed the Medical Outcome Study Short Form 12 to assess mental and physical function. Results: Six themes emerged from qualitative analyses which centered around 3 main points: concerns about the illness itself, concerns about swallowing difficulty, and concerns about the impact of EoE on social interactions. Patients were generally open to disclosing their illness status and reported relief at receipt of the EoE diagnosis. EoE patients did not differ from healthy norms for physical well-being, and were similar to comparable illness groups for mental functioning. Conclusions: Our study demonstrated that EoE has substantial impact on several psychosocial domains that are not adequately addressed by focused assessment of physical complaints of dysphagia. The results support the importance of development of disease-specific instruments pertaining to quality of life in EoE patients.