title: Patient-reported Outcomes in a French Nationwide Survey of Inflammatory Bowel Disease Patients.
abstract: BACKGROUND
  Patient reported-outcomes [PROs] are a major therapeutic goal in inflammatory bowel disease [IBD].
  
  
  METHODS
  Between January and June 2014, patients affiliated with the French national IBD association filled out six self-questionnaires: quality of life 9QoL, according to the Short Inflammatory Bowel Disease Questionnaire [SIBDQ] and the Short-Form-36 Questionnaire [SF-36] v2); fatigue (the Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-F]); work productivity (the Work Productivity and Activity Impairment [WPAI] questionnaire); disability [the I nflammatory Bowel Disease Disability Index]; and anxiety/depression (the Hospital Anxiety and Depression scale [HADS]). Associated factors were identified by univariate and multivariate logistic regression analyses.
  
  
  RESULTS
  Datasets were obtained from 1185 IBD patients. Around half of patients reported poor QoL [SIBDQ <45: 53.3%], severe fatigue [FACIT-F <30: 47.4%] and/or depression [HAD-D >7: 49.4%]. One-third of the patients reported anxiety [HAD-A >7: 30.3%] and/or moderate [22.4%] or severe [11.9%] disability. About half of them reported presenteeism and moderate-to-severe loss of work productivity and loss of activity. Poor QoL, severe fatigue, severe disease-related disability, and/or high WPAI were all associated with female gender, unemployment, and disease activity. Poor QoL, severe fatigue, and high WPAI were also associated with the use of tumour necrosis factor antagonists. A history of surgery was associated with poor QoL, whereas age was associated with severe fatigue. Severe depression was associated with female gender and disease activity.
  
  
  CONCLUSIONS
  The disease burden is very high in IBD, with poor QoL, fatigue, work impairment, and depression in half of patients. Marked disability and anxiety were reported by one-third of patients.
authors: INSERM U954 and Hepatogastroenterology Department, University Hospital, Henri Poincaré University, Vandoeuvre-lès-Nancy, France.
authors: Nicolas
authors: N
authors: Williet
authors: Public Health, Epidemiology and Economic Health, EPIMAD Registry, University Hospital, Lille, France.|International Center of Inflammation Research LIRIC-UMR 995 INSERM/University Hospital, Lille, France.
authors: Hélène
authors: H
authors: Sarter
authors: Public Health, Epidemiology and Economic Health, EPIMAD Registry, University Hospital, Lille, France.|International Center of Inflammation Research LIRIC-UMR 995 INSERM/University Hospital, Lille, France.
authors: Corinne
authors: C
authors: Gower-Rousseau
authors: INSERM U954 and Hepatogastroenterology Department, University Hospital, Henri Poincaré University, Vandoeuvre-lès-Nancy, France.
authors: Charlotte
authors: C
authors: Adrianjafy
authors: Francois Aupetit Association;75019, Paris, France.
authors: Alain
authors: A
authors: Olympie
authors: Francois Aupetit Association;75019, Paris, France.
authors: Anne
authors: A
authors: Buisson
authors: Department of Gastroenterology, Saint-Antoine University Hospital, 75012, Paris, France.
authors: Laurent
authors: L
authors: Beaugerie
authors: INSERM U954 and Hepatogastroenterology Department, University Hospital, Henri Poincaré University, Vandoeuvre-lès-Nancy, France peyrinbiroulet@gmail.com.
authors: Laurent
authors: L
authors: Peyrin-Biroulet
mesh_terms: D000328:Adult; D001526:Behavioral Symptoms / Q000209:etiology / Q000503:physiopathology; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005221:Fatigue / Q000209:etiology / Q000503:physiopathology; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology; D017567:Karnofsky Performance Status / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D062072:Patient Acuity; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D000066477:Work Performance / Q000706:statistics & numerical data
keywords: Patient-reported outcome; cohort; inflammatory bowel disease