Background and Aims Inflammatory bowel disease (IBD) is a lifelong disease requiring frequent assessment to guide treatment and prevent flares or progression. Multiple tools are available for clinicians to monitor disease activity; however, there are a paucity of data to inform which monitoring tools are most acceptable to patients. The review aims to describe the available evidence for patient preference, satisfaction, tolerance and/or acceptability of the available monitoring tools in adults with IBD. Methods Embase, Medline, Cochrane Central and Clinical Trials.gov were searched from January 1980 to April 2019 for all study types reporting on the perspectives of adults with confirmed IBD on monitoring tools, where two or more tools were compared. Outcome measures with summary and descriptive data were presented. Results In 10 studies evaluating 1846 participants, monitoring tools included venipuncture, stool collection, gastrointestinal ultrasound, computed tomography, magnetic resonance imaging, wireless capsule endoscopy, barium follow-through and endoscopy. Outcome domains were patient satisfaction, acceptability of monitoring tool and patient preference. Noninvasive investigations were preferable to endoscopy in nine studies. When assessed, gastrointestinal ultrasound was consistently associated with greater acceptability and satisfaction compared with endoscopy or other imaging modalities. Conclusions Adults with IBD preferred noninvasive investigations, in particular gastrointestinal ultrasound, as compared to endoscopy for monitoring disease activity. When assessing disease activity, patient perceptions should be considered in the selection of monitoring tools. Further research should address whether adpoting monitoring approaches considered more acceptable to patients results in greater satisfaction, adherence and ultimately more beneficial clinical outcomes.

Background Management of inflammatory bowel disease (IBD) is directed toward both clinical symptoms as well as objective disease activity as a part of a ‘treat to target’ strategy. Despite the increasing burden of disease activity assessment in IBD, patient preferences for monitoring tools have scarcely been considered. This study aimed to describe the available evidence for patient preference, satisfaction, tolerance and/or acceptability of the available monitoring tools in adults with IBD. Methods A systematic search of Embase, Medline, Pubmed, Cochrane Central and Clinical Trials.gov from January 1980 to April 2019 was conducted using PRISMA best practice guidelines. Included were all study types reporting on the perspectives of adults with confirmed IBD on monitoring tools, where two or more such tools were compared. Outcome measures with summary and descriptive data were presented. Results 10 studies evaluating 1846 participants were included. Study size ranged from 18 to 916 participants. Monitoring tools included venepuncture, stool collection and faecal calprotectin (FC), gastrointestinal ultrasound (GIUS), computed tomography (CT), magnetic resonance imaging (MRI), wireless capsule endoscopy (WCE), barium follow-through, and endoscopy. The measurement tools used were visual analogue scales (VAS), Likert scales or binary preference questions. Outcome domains were patient satisfaction, acceptability of monitoring tool, and patient preference. Meta-analysis was not possible due to heterogeneity of data. Overall, patient preference was for non-invasive tools of disease monitoring and these were associated with a higher level of acceptability. Across all included studies, GIUS was identified by patients as the preferred tool for disease activity assessment. Both FC and other forms of imaging (MRE and CTE) were generally considered preferable to endoscopy, however less so than GIUS. Patient preference for blood testing varied, but in one study was lower than endoscopy. Two studies compared VAS acceptability of multiple IBD monitoring tools. Among 1037 patients, GIUS was considered the most acceptable IBD monitoring tool (mean VAS 9.29), as compared with venepuncture (9.28), WCE (8.5), MRE (8.08), stool collection (7.87), colonoscopy (7.07) and sigmoidoscopy (5.27). Conclusion This is the first systematic review to evaluate patient perceptions of monitoring tools used in IBD. Patients showed a preference for GIUS and more generally for faecal sampling and non-invasive imaging over endoscopy. Further research should address whether clinician selection of more acceptable monitoring tools in IBD engenders greater patient satisfaction, adherence, and a consequent improvement in disease-related outcomes.