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

Background: Patient reported-outcomes (PROs) are a major therapeutic goal in inflammatory bowel disease (IBD). Methods: Between January to June 2014, patients affiliated with the French national IBD association filled out six self-questionnaires: quality of life (QoL, 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 Inflammatory 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 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. Conclusion: 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.