Disease burden of patients with moderate to severe ulcerative colitis: A French multicenter real-life study (THEFAR)

Background: Specific studies on the impact of ulcerative colitis (UC) and bowel urgency (BU) on disability and quality of life (QoL) of patients on advanced therapies are missing.

Methods: Clinical and therapeutic management data were collected by Gastroenterologists from adult patients with UC treated with advanced therapies. Patients reported outcomes on QoL were collected using patient-reported questionnaires.

Results: Forty-one sites enrolled 293 patients. Median age was 42.0 years, median disease duration was 6.0 years. 38.9 % had active disease (partial Mayo score>1). Median treatment duration was 16.9 months. 166 (57.0 %) patients had BU [median UNRS=2] and 78.3 % had fecal incontinence [median Wexner score=8.0]. Moderate to severe disability (IBD-Disk score≥40) was reported in 37.8 % patients. BU patients had a higher Wexner score [10.0 vs 5.2, p < 0.0001] and moderate to severe disability rate (53.7% vs 16.9 %, p < 0.0001), lower QoL and work productivity than those in BU remission: mean EQ-5D-5 L utility [0.846 vs 0.943, p < 0.0001], VAS for self-rated health [66.2 vs 82.1, p < 0.0001], and overall work impairment [35.7% vs 11.3 %, p < 0.0001].

Conclusion: The burden of moderate to severe UC, especially in patients with BU, is high. These findings highlight that BU control remains an unmet medical need in UC patients and underscore the need for new innovative treatments.