S1081 Patient Reported Outcomes in Adults With Eosinophilic Esophagitis

Abstract

Background: Gastrointestinal illnesses are often associated with decreased health related quality of life (HRQOL). Eosinophilic Esophagitis (EoE) has emerged as an important cause of dysphagia and food impaction. The patient's perspective on the disease has received little attention. The aim of this prospective study was to characterize HRQOL as it relates to patient reported outcomes in EoE. Methods: 23 adult patients (pts) with a diagnosis of EoE participated. Demographics, a dysphagia symptom score, SF-12v2 PCS and MCS, and an audio-recorded, 22-item structured interview were collected. Interview data were reviewed to identify common domains relating to HRQOL. Results: Mean (±SD) age was 39±2.5 years and 70% of subjects were male. Mean time since diagnosis was 1.5±0.4 years with symptomonset 11.5±2.5 years prior to diagnosis. 78%of patients rated dysphagia asmoderate or severe. Dysphagia frequency was 4±1.2 (weekly episodes). EoE pts had significantly higher PCS scores than norms for allergies, stomach disease, and diabetes (p<0.01). No differences were found when compared to healthy norms. EoE pts did not differ from illness groups for MCS, though were lower than healthy norms (p=.007). Interview data yielded domains related to HRQOL in EoE. 1) Fear/Anxiety/Frustration. Patients felt frustrated with the failure of past medical professionals to recognize their disease, and 74% felt relieved when diagnosed with EoE. During episodes of dysphagia, 57% expressed feelings of fear or panic, and 30% feared future episodes or episodes that would require ER visits. 2) Impact on Functioning. EoE caused public embarrassment or distress in 65% of patients, and resulted in modified eating habits in 87% of patients. 3) Feelings about the Disease. 26% of patients had concerns regarding the long-term consequences of the disease and the lack of research about the disease. Furthermore, 52% expressed fear that the disease would progress, and 48% were wary of medication side effects.Conclusions:Compared with other chronic illnesses, EoE pts reported significantly better physical health and similar mental health function. Exploratory interviews with adult EoE patients revealed that the disease impacts a number of important domains related to HRQOL including frustration, embarrassment, and fears about disease outcomes. Based on these results, a preliminary questionnaire is being designed to better evaluate disease-specific EoE HRQOL issues that may be missed by standardized measures of general health.