Patient-reported Outcomes in a French Nationwide Survey of Inflammatory Bowel Disease Patients

J Crohns Colitis. 2017 Feb;11(2):165-174. doi: 10.1093/ecco-jcc/jjw145. Epub 2016 Aug 11.


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.

Keywords: Patient-reported outcome; cohort; inflammatory bowel disease.

MeSH terms

  • Adult
  • Behavioral Symptoms / etiology
  • Behavioral Symptoms / physiopathology
  • Cost of Illness*
  • Cross-Sectional Studies
  • Disability Evaluation
  • Fatigue / etiology
  • Fatigue / physiopathology
  • Female
  • France / epidemiology
  • Humans
  • Inflammatory Bowel Diseases* / diagnosis
  • Inflammatory Bowel Diseases* / epidemiology
  • Inflammatory Bowel Diseases* / physiopathology
  • Inflammatory Bowel Diseases* / psychology
  • Karnofsky Performance Status / statistics & numerical data
  • Male
  • Middle Aged
  • Patient Acuity
  • Patient Reported Outcome Measures
  • Quality of Life*
  • Work Performance / statistics & numerical data