title: The adult eosinophilic oesophagitis quality of life questionnaire: a new measure of health-related quality of life.
abstract: BACKGROUND
  Eosinophilic oesophagitis (EoO) is a chronic disease characterised by significant symptoms and challenging treatment regimens. Health-related quality of life (HRQOL) is a useful way to direct patient care. EoO symptoms and treatment may impact patient HRQOL. Currently, there is no reliable and valid measure of adult EoO patient HRQOL.
  
  
  OBJECTIVE
  To validate the Adult Eosinophilic Oesophagitis Quality of Life (EoO-QOL-A) questionnaire as a measure of HRQOL in this population.
  
  
  METHODS
  The EoO patients aged 18-70 recruited via an out-patient GI clinic and two EoO advocacy groups completed the preliminary EoO-QOL-A, demographic and clinical information, and measures of general HRQOL, psychological distress and EoO symptom severity. A subset of patients completed test-retest assessments. Scale reliability, internal consistency, factor structure, concurrent and convergent validity were evaluated.
  
  
  RESULTS
  A total of 201 patients have participated. The study sample was primarily Caucasian, college-educated, and evenly split by gender. The average duration of disease was 7 years with duration of symptoms of 26 months prior to diagnosis. Patients reported were using both pharmacological and dietary treatments. Factor analysis yielded a 37-item, 5-factor structure: Eating/Diet Impact, Social Impact, Emotional Impact, Disease Anxiety and Choking Anxiety. The EoO-QOL-A demonstrated excellent internal consistency, split-half and test-retest reliability. Concurrent and convergent validity were supported by moderate correlations with established HRQOL measures, psychological distress and oesophageal symptoms.
  
  
  CONCLUSIONS
  The EoO-QOL-A is a valid and reliable disease-specific HRQOL measure for adult EoO patients. Developing the Adult Eosinophilic Oesophagitis Quality of Life is an important step in guiding treatment practices, improving disease education and standardising research protocols.
authors.affiliation: Northwestern University Feinberg School of Medicine, Division of Gastroenterology, Chicago, IL 60611, USA. ttaft@northwestern.edu
authors.forename: T H
authors.initials: TH
authors.lastname: Taft
authors.forename: E
authors.initials: E
authors.lastname: Kern
authors.forename: M A
authors.initials: MA
authors.lastname: Kwiatek
authors.forename: I
authors.initials: I
authors.lastname: Hirano
authors.forename: N
authors.initials: N
authors.lastname: Gonsalves
authors.forename: L
authors.initials: L
authors.lastname: Keefer
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D057765:Eosinophilic Esophagitis / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010045:Outpatients; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D055815:Young Adult