Abstract

Abstract Background The COVID-19 pandemic has placed great strain on standard outpatient services including those with IBD. There has been interest in using guided self-management and patient-initiated review to allow patients to manage their condition, while at the same time reserving outpatient capacity for those needing seen urgently. We developed a pathway for patients with stable ulcerative proctitis, which included a leaflet on symptom managment and when to contact the IBD nurses if ongoing symptoms. Methods Patients were identified from clinic lists cancelled during the pandemic who had a diagnosis of ulcerative proctitis. Case notes were reviewed to ensure a correct diagnosis and inclusion criteria met(stable disease,no immunosuppressant treatment). These patients were sent a Guided Self-Management leaflet in the post. A follow on questionnaire was sent 6 months after ensuring patients were happy with the information received. Non-responders were sent a second questionnaire and/or telephone call. Results 37 Patients were identified. We received responses (via post, phone or email) from 28/37 patients (76%). 10/28 (36%) didn’t receive or do not recall receiving the leaflet. 18/28 (64%) received the leaflet. Of those who received the leaflet, 16/18 felt it was easy to understand and contained enough information to confidently manage their symptoms. 2 patients had 1 flare and 3 patients had multiple flares after receiving the leaflet. Of those with flares, 2 patients were able to self-manage their proctitis using the guided self help information. 2 patients had to contact the IBD nurses. These patients were called back within 24 hours and received useful advice. One patient had forgotten to use the leaflet. No one required rescue steroids or admission to hospital. Overall, 17/18 (94%) felt the service was good or excellent compared to previous clinic review systems. Conclusion These results suggest patients are receptive to using guided self-management and patient-initiated review. Although we were not expecting to see many flares, given the low risk selected group, the results suggest patients can successfully manage flares and contact our services for support if required. It is a concern a significant proportion of patients did not recall receiving the leaflet. Although this is a small subgroup, the results show clinic time can be saved which remains a pressurised resource as we recover from the pandemic. The principles of guided self management and patient initiated review could be applied to other patient groups(eg stable UC patients not on immunosuppressants). In future it would be important to ensure patients receive and understand the leaflet. A clinic appointment prior to discharge into such pathways should be considered.

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