N19 Gaps in Monitoring, Access, and Self-Management Confidence Among Primary Care Patients With Ulcerative Colitis: A Mixed-Methods Patient Experience Evaluation

Abstract Background Ulcerative colitis (UC) requires proactive monitoring and shared management between primary and secondary care. However, patients in rural areas may experience limited access to specialist teams and inconsistent use of treat-to-target (T2T) monitoring, including faecal calprotectin (FCP). Understanding patient experience is essential for designing responsive models of care aligned with international standards. Methods The aim is to explore patient-reported experience of UC follow-up, monitoring, medicine use, and self-management in a rural English general practice population using a convergent mixed-methods approach. A cross-sectional patient questionnaire comprising quantitative closed items and free-text qualitative responses was distributed electronically. Descriptive statistics were used for quantitative analysis. Inductive thematic analysis was applied to free-text data. Data were integrated to identify convergent and divergent patterns in patient experience. Results Twenty-one patients responded (mean age skewed towards older groups; 65% ≥65 years). Half had lived with UC for >10 years. Specialist engagement was low: 76% were not currently under hospital follow-up, 59% had not seen a consultant for >1 year, and 47% reported no access to an IBD nurse. Only 41% knew how to contact their IBD team, and 44% did not know what to do during a flare. Monitoring gaps were prominent: only 7% had recent blood tests, none had an FCP test within 3 months, and 67% did not know what FCP measures. Medication use was limited, with 50% reporting no active UC therapy. Among those prescribed medicines, adherence was high (75% “always”). Quality of life was moderate (mean score 79/100), but confidence in managing flares was lower (62/100) and 36% reported significant anxiety about deterioration. Qualitative themes highlighted prolonged waits for specialist review, desire for clearer information, and fear of cancer misinterpreting UC symptoms. Conclusion Patients with long-standing UC in this rural primary care population report inadequate access to specialist care, limited understanding of disease monitoring, and inconsistent engagement with T2T principles. Despite generally stable day-to-day functioning, anxiety and uncertainty remain common. These findings demonstrate the need for integrated primary–secondary pathways, structured flare management plans, improved communication about FCP targets, and accessible patient education resources to support self-management and psychological wellbeing. Reference: Harbord M, Eliakim R, Bettenworth D, et al. Third European Evidence-based Consensus on Diagnosis and Management of Ulcerative Colitis. J Crohns Colitis. 2017;11(6):649-670.Turner D, Ricciuto A, Lewis A, et al. STRIDE-II: Treat-to-Target Recommendations in IBD. Gastroenterology. 2021;160(5):1570-1583.Lamb CA, Kennedy NA, Raine T, et al. British Society of Gastroenterology Guidelines for UC. Gut. 2019;68(4):543-578. Conflict of interest: Ellis, Victoria: None promotional grant from Ferring Deaney, Carl: No promotional grant from Ferring Haith, Lisa: None promotional grant from Ferring.