Abstract Background Ulcerative proctitis (UP) is associated with bowel urgency, rectal bleeding and fecal incontinence.1 However, data regarding the impact of these symptoms on quality of life (QoL) is scarce.2 Methods Patients with active UP (endoscopic MAYO score ≥1 up to 15 cm beyond the anal verge) were prospectively enrolled in 7 Dutch (non-)academic hospitals from March to November 2025. Baseline clinical and demographical data were collected. Digital questionnaires were used to assess QoL (EQ-5D-5L), patient-reported disease activity (MIAH-UC), bowel urgency (uNRS), fecal incontinence (CCFIS), constipation (PAC-SYM) and sexual distress (FSDS). The QoL (EQ-5D-5L utility score) was compared to a cohort of healthy Dutch adults (n = 979)3 and patients with active more extensive ulcerative colitis (fecal calprotectin ≥150μg/g or CRP ≥5mg/L) from the same region (n = 155)4. Multivariable linear regression was used to identify risk factors for impaired QoL. Results A total of 108 patients were included (56% female, median age 45 years IQR 30-58). Fifty-four had newly diagnosed UP and 54 were previously diagnosed (median disease duration 8 years IQR 3-12) with UP (n = 24) or extensive colitis (n = 30). Endoscopic MAYO score was mild in 42 (41%), moderate in 52 (50%) and severe in 9 (8.7%) patients; median fecal calprotectin was 367 ug/g (IQR 180-1089). Questionnaire response rate was 82% and demonstrated a mean EQ-5D-5L VAS and utility scores of 70 (SD 17.3, maximum score 100) and 0.79 (SD 0.19, maximum score 1.00), respectively. QoL (EQ-5D-5L utility score) of UP patients was significantly lower compared to healthy Dutch adults (p = 0.001), and similar to patients with active left-sided or pancolitis (p = 0.84) (Figure 1a). Clinical symptoms were frequent, with 71% (n = 63) reporting significant bowel urgency (uNRS ≥5), 25% (n = 22) fecal incontinence affecting daily life at least weekly (Figure 1b) and 24% (n = 20) sexually related personal distress (FSDS ≥15). In addition, 13% (n = 12) reported moderate to severe constipation symptoms (≥2 on PAC-SYM item 9). Multivariable analyses demonstrated that both increased fecal incontinence (β -0.014, p = 0.023) and sexual distress scores (β -0.008, p 0.001) were significantly associated with a reduced QoL (Table 1). Conclusion Patients with UP experience a significant symptom burden and report a reduced QoL that is comparable to patients with more extensive UC. Fecal incontinence and sexual distress are key contributors to QoL impairment and should be routinely assessed in clinical practice. Structured symptom screening and targeted interventions such as pelvic floor therapy or psychological support may promote holistic, patient-centered care and improve QoL outcomes. References: 1. Kyriacou M, Radford S, Moran GW; Focus group collaborators group. Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them. BMJ Open Gastroenterol. 2023;10(1):e001139. 2. Caron B, Abreu MT, Siegel CA, et al. IOIBD Recommendations for Clinical Trials in Ulcerative Proctitis: The PROCTRIAL Consensus. Clin Gastroenterol Hepatol. 2022;20(11):2619-2627.e1. 3. Versteegh MM, Vermeulen KM, Evers SMAA, de Wit GA, Prenger R, Stolk EA. Dutch Tariff for the Five-Level Version of EQ-5D. Value Health. 2016;19(4):343-352. 4. van Linschoten RCA, van der Woude CJ, Visser E, et al. Variation Between Hospitals in Outcomes and Costs of IBD Care: Results From the IBD Value Study. Inflamm Bowel Dis. 2025;31(2):332-343. Conflict of interest: Mr. Pierik, Robert-Jan: None. Bodelier, Alexander: Participation in advisory boards of: Johnson&Johnson, Eli Lilly, Sanofi. Received unrestricted grant from Amphia research fund. West, Rachel: Has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Ferring, Pfizer, Galapagos, AbbVie and Janssen. Hoekstra, Jildou: None De Jonge, Vincent: None van der Wiel, Sanne: None Verweij, Karen: None Ter Borg, P.: None Visser, Elyke: Received a speaker fee from Lilly Versteegh, Matthijs: None Derikx, Lauranne: Lauranne Derikx has served on advisory boards as a speaker for Abbvie, Johnson & Johnson, Alfasigma, Takeda, and Pfizer. She has received independent research funding from Pfizer. De Vries, Annemarie C.: Has served on advisory boards for Takeda, Janssen, Bristol Myers Squibb, Abbvie, Pfizer, and Galapagos and has received unrestricted research grants from Takeda, Janssen, and Pfizer.
Pierik et al. (Thu,) studied this question.