Background: Growing evidence supports earlier surgery for isolated terminal ileal (TI) Crohn's disease (CD), yet clinical practice remains variable, with surgery often reserved for medical treatment failure or disease complications. This thesis aimed to explore the evidence-practice gap through a study on patients' and clinicians' perspectives on the role and positioning of bowel resection for surgery-naïve isolated luminal TI CD.
Methods: A mixed-methods UK-based study was conducted including: (1) a systematic review and meta-analysis comparing early bowel resection and medical therapy; (2) qualitative interviews with UK healthcare professionals (HCPs); (3) discrete choice experiment with HCPs; (4) qualitative interviews with patients with TI CD; and (5) survey of patients with a previous ileocolic resection.
Results: The systematic review demonstrated that early surgery was associated with more stable remission and a reduced need for surgery at five years (OR 0.32, 95% CI 0.19-0.54) compared to medical therapy. Despite this evidence, interviews revealed that HCPs (n=23) consider surgery late in the treatment pathway, influenced by organisational barriers, perceived patient reluctance, and professional biases. The HCP discrete choice experiment (n=140) revealed theoretical equipoise when decisions were based purely on clinical outcomes, contrasting with real-world practice favouring medical therapy. Patient interviews (n=28) revealed that medical therapy was preferred initially but patients’ views were shaped by biased information and inadequate surgical counselling. Of 171 survey respondents, 43% wished they had surgery sooner; decision-regret was low (median 5/100), particularly when shared decision-making was optimal.
Conclusions: Surgery for isolated TI CD is not offered as an alternative to medical therapy despite supporting evidence. Multiple barriers to early or even timely surgery exist. The priority should be to improve shared decision-making processes to allow patients to make informed decisions. Patient-centred care can be delivered through improved multidisciplinary teamwork, the development of patient decision-aids, and the standardisation of care pathways.
