‘Surgery is a last resort measure’: a qualitative study of patient views on treatment for ileocaecal Crohn’s disease

Objective: Growing evidence supports earlier surgery for isolated terminal ileal Crohn’s disease, yet clinicians perceive patient reluctance as a barrier to surgery. This study explored patients’ perspectives on surgery in this context to understand factors shaping treatment preferences and decision-making.

Method: Semistructured interviews were conducted with patients from seven English and Welsh hospitals diagnosed with isolated terminal ileal Crohn’s disease. Purposive sampling ensured representation across treatment experiences, demographics and care settings. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis.

Results: 28 patients were interviewed (mean age 42 years, 17 with previous surgery). Three themes emerged: (1) Surgery as a measure of last resort—participants preferred medical therapy first, viewing surgery as a major step with significant risks, but their views were influenced by clinicians’ approach to discussion of surgery; (2) Information-seeking as a means of being in control—patients desired involvement in decision-making, but this need was not always met and (3) ‘Normal life’ as the ultimate treatment goal—restoration of quality of life and social functioning was paramount, with surgery seeming unnecessary while medical therapy is effective enough to maintain normal activities, but preferences changed in favour of surgery as their condition deteriorated.

Conclusions: Patients are reluctant to consider surgery without adequate trial of medical therapy. However, their views may be shaped by biased or incomplete information from clinicians who position surgery as ‘last resort’. Early, open discussions about surgery using multidisciplinary approaches and peer support systems are needed to enable truly informed, patient-centred decisions.