title: Qualitative assessment of patient-reported outcomes in adults with eosinophilic esophagitis.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.affiliation: Division of Gastroenterology, Northwestern University Feinberg School of Medicine, Chicago, IL 60611-2951, USA. ttaft@northwestern.edu
authors.forename: Tiffany H
authors.initials: TH
authors.lastname: Taft
authors.forename: Emily
authors.initials: E
authors.lastname: Kern
authors.forename: Laurie
authors.initials: L
authors.lastname: Keefer
authors.forename: David
authors.initials: D
authors.lastname: Burstein
authors.forename: Ikuo
authors.initials: I
authors.lastname: Hirano
mesh_terms: D000328:Adult; D003625:Data Collection; D003680:Deglutition Disorders / Q000209:etiology / Q000523:psychology*; D057765:Eosinophilic Esophagitis / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D011788:Quality of Life