What question did this study set out to answer?

The aim is to assess the burden of ulcerative proctitis compared to more extensive ulcerative colitis in terms of clinical outcomes and treatment patterns.

January 23, 2026

P0507Ulcerative proctitis: Limited extent but an underestimated burden – insights from the Crohn’s Colitis Cure Data Insights Program

Key Points

The aim is to assess the burden of ulcerative proctitis compared to more extensive ulcerative colitis in terms of clinical outcomes and treatment patterns.
Data from the Crohn’s Colitis Care registry was analyzed.
Participants included individuals with ulcerative colitis under active care within 14 months.
Clinical outcomes, treatment patterns, and patient-reported outcomes were compared across disease phenotypes.
Multivariable ordinal logistic regression was used to identify factors related to perceived burden.
20% of individuals had ulcerative proctitis, 35% had left-sided colitis, and 45% had pancolitis.
Partial Mayo remission was significantly lower in ulcerative proctitis (85.6%) compared to more extensive disease (92%; p = 0.02).
Patient-perceived burden was higher in ulcerative proctitis (45.4%) than in other types (38.1%; p = 0.05).
Advanced therapy usage was markedly less in ulcerative proctitis (18.9% vs 44.3%; p < 0.001).
Healthcare utilization was lower in ulcerative proctitis, with fewer annual clinic visits and procedures.

Abstract

Abstract Background Ulcerative proctitis (UP) is defined by inflammation confined to the rectum, yet substantial symptoms may persist despite effective first-line therapy (1). It may also be regarded as a milder form of ulcerative colitis (UC), contributing to under-recognition of its burden. We assessed the burden of disease in UP compared with more extensive UC, including differences in clinical outcomes, treatment patterns and patient-reported outcomes (PROs). Methods Prospectively entered routine-care data from the Crohn’s Colitis Care (CCCare) registry were analysed (June 2025). Individuals with UC under active care within 14 months were included; new diagnoses (3 months) were excluded. Disease extent was defined by worst recorded Montreal phenotype extent (E1: proctitis, E2: left-sided colitis; E3: pancolitis). Clinical outcomes (Partial Mayo and PRO2 remission), treatment patterns and PROs, including the Patient-Perceived Burden of Disease (PPBoD) score (2), were compared across phenotypes. Multivariable ordinal logistic regression with centre-level random effects was used to identify factors associated with greater perceived burden. Results Of 1, 672 individuals, 334 (20%) had E1, 580 (35%) E2 and 758 (45%) E3 disease. Median age was similar (43 years, p = 0. 51), while more females were in E1 (59. 6% vs 49% E2/E3; p 0. 001). Disease duration was shortest in E1 (median 6. 4 years vs 10. 2 and 9. 9 years in E2 and E3 respectively; p 0. 001). Partial Mayo remission was lower in E1 (85. 6% vs 92%; p = 0. 02), as was PRO2 remission (61. 1% vs 68. 7%; p = 0. 009). Any patient-perceived burden (PPBoD ≥ 1) was more common in E1 (45. 4% vs 38. 1% E2/3; p = 0. 05). Advanced therapy use was markedly lower in E1 (18. 9% vs 44. 3%; p 0. 001). Conversely, 5-aminosalicyclate use was most common in E1 (71. 6% vs 55% in E2/E3; p 0. 001), with rectal or oral–rectal therapy used more frequently in E1 (13. 8%; p 0. 001). Healthcare utilisation was lower in E1, with fewer annualised clinic reviews (1. 3 vs 1. 7 per person-year), colonoscopies (0. 1 vs 0. 2), and radiology encounters (0. 07 vs 0. 1; all p ≤ 0. 015). Total outpatient encounters per year were also lower in E1 (1. 6 vs 1. 9; p 0. 001). In multivariable analysis, male sex (aOR 0. 71; p = 0. 007), current advanced therapy use (aOR 0. 69; p = 0. 007), and absence of steroid exposure within the prior 12 months (aOR 0. 56; p = 0. 02) were independently associated with lower PPBoD. Disease extent did not predict PPBoD (E2 vs E1: aOR 0. 89; p = 0. 53; E3 vs E1: 0. 81; p = 0. 24). Conclusion UP carries substantial burden that may be underestimated if judgement relies solely on disease extent. Systematic approaches to ensure visibility of symptom-based and patient-reported measures may improve recognition of unmet needs and optimise care. References: 1. Davis E, Love P. Refractory proctitis. In: Sturm A, White L, eds. Inflammatory Bowel Disease Nursing Manual. Cham: Springer; 2025. doi: 10. 1007/978-3-031-87503-8₁8. 2. Pipicella JL, Gu B, McNamara J, et al. Proposal and exploration of a novel score to quantify patient-perceived burden of inflammatory bowel disease under routine care. Intern Med J. 2025;55 (4): 589-598. doi: 10. 1111/imj. 16634. Conflict of interest: Dr. Wu, Rodger: No conflict of interest Su, Wai Kin: No conflict of interest Rivas, Consuelo: No conflict of interest Wilson, William: No conflict of interest Caquilpan, Victor: No conflict of interest Kayali, Dina: No conflict of interest da Fonseca Pereira, Candida: No conflict of interest Connor, Susan Jane: Grant: Research Support: Abbvie, Agency for Clinical Innovation, Amgen, BMS, Chiesi, Celltrion, DrFalk, Ferring, Janssen, Medical Research Future Fund, Pfizer, South Western Sydney Local Health District, Sydney Partnership for Health, Research and Enterprise, Takeda and The Leona M and Harry B Helmsley Charitable Trust Personal Fees: Ad Boards: Abbvie, Amgen, BMS, Celltrion, Eli Lilly, Ferring, GSK, Janssen, Organon, Pfizer, Takeda Speaker Fees: Abbvie, Cornerstones Health, Dr Falk, Ferring, Janssen, Pfizer, Sandoz, Sydney IBD School, Takeda Educational Support: DrFalk, Sandoz, Takeda Andrews, Jane Mary: Grant: The work I will present was funded via CCCure. CCCure’s funding sources include grants for research and payments for data reports from Pharma including AbbVie, J&J, Takeda, Celltrion, Falk, Ferring, BMS, Janssen, Pfizer, Sandoz

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P0507Ulcerative proctitis: Limited extent but an underestimated burden – insights from the Crohn’s Colitis Cure Data Insights Program

Key Points

Abstract

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