Improving counselling for patients considering surgery for ulcerative colitis

To see our latest courses, or to donate to the St Mark's Hospital Foundation, please visit our channel description for details. Title: Improving counselling for patients considering surgery for ulcerative colitis Speaker: Orestis Argyriou Event: St Mark's Academic Institute Grand Round Year: 2025 This research programme aims to improve counselling and shared decision-making for patients considering surgery for ulcerative colitis (UC). Following colectomy, patients may choose between restorative procedures, such as ileoanal pouch surgery, and alternatives including a permanent ileostomy. These decisions are complex and require balanced information about surgical risks, outcomes, quality of life, and individual preferences. The research addresses three key areas: surgical evidence, quality-of-life outcomes, and information delivery. First, the international multicentre FROG study aims to characterise surgical practice and outcomes following colectomy for UC. Through retrospective data collection across participating centres, the study will examine variations in surgical pathways, restorative procedures, operative techniques, complications, and the timing of subsequent operations. Approved for dissemination through the European Crohn’s and Colitis Organisation (ECCO), the study has attracted interest from 25 centres across 12 countries. Second, the programme investigates quality of life, particularly employment following surgery. A systematic review of 139 studies identified substantial limitations in how work-related outcomes are measured and reported. Existing validated questionnaires provide limited detail, while individual questions often fail to capture the complexity of patients’ experiences. Subsequent qualitative interviews are exploring the impact of surgery on employment, workplace challenges, professional identity, and access to appropriate support. Preliminary findings highlight inadequate preoperative information about working after surgery and the need for clearer guidance on workplace adjustments, benefits, and employment-related challenges. Future research will include a nationwide survey to quantify these experiences. Third, the programme examines contemporary information-sharing practices, particularly social media. A systematic review of 33 studies demonstrated that patients increasingly use social media for information, shared experiences, and peer support. Thematic analysis of patient-generated TikTok content identified recurring needs for clearer explanations of pouch surgery, practical guidance on living with a pouch or stoma, and efforts to reduce stigma surrounding stomas. Collectively, these projects aim to strengthen evidence-based, patient-centred counselling by improving surgical outcome data, expanding understanding of quality of life, and developing more effective approaches to information delivery. Ultimately, the goal is to support informed decisions that reflect patients’ priorities, values, and expectations.