“You don’t know what to expect”: unmet needs in patient experience of capsule endoscopy

Objective Video capsule endoscopy (VCE) is a tool for investigation of the gastrointestinal tract and a non-invasive alternative to colonoscopy. Despite its increasing use, patient experience and acceptability of VCE remains under-examined. This qualitative study examined the experiential nature of undergoing this novel investigation, seeking potential areas for improvement. Methods Patients aged ≥18 years who had undergone VCE for any indication at two National Health Service sites were invited to participate in semi-structured telephone interviews which explored VCE experience from point of procedure booking to receipt of results. Recruitment continued until no new data emerged that challenged analysis (n=21). Thematic analysis was undertaken, with coded data organised initially as a sequential description of the procedural pathway, then into higher-order themes. Results Participants discussed their experiences of VCE, including undergoing patency tests, problems encountered in situating the capsule and experiences and expectations of passing the capsule. Three higher-order themes were developed: expectations and unknowns; perceptions of risk and comparison of VCE with other endoscopic procedures. Participants described a range of unmet information needs despite receiving written information, most notably: capsule appearance and size and experiential nature of swallowing it; capsule siting and potential additional procedures to achieve this and mechanisms and timelines for receiving results. Conclusions Patients are generally accepting of VCE but report a number of areas of unmet information needs. Improving information provision around this relatively new endoscopic procedure would improve patient experience. Procedure-specific patient reported experience measures should be developed to enable robust assessment of VCE experiences.