N14 Patients and clinicians have different priorities when discussing pain in the IBD clinic
Authors: Huisman D , Andrews E , Williams A C D C , Parkes M , Norton C 
Published: January 2025

Background

Pain affects approximately 70% of patients with inflammatory bowel disease (IBD), persisting for five or more years in nearly half, and significantly impacts their quality of life.1 However, surveys indicate it is not routinely discussed in the IBD clinic.1,2 Clinicians often focus on objective measures of IBD activity rather than on pain and its management, assuming that addressing disease-related factors will alleviate pain.3 Compounding this, patients find it hard to articulate their pain and may not report it because they believe that pain is not taken seriously by clinicians.4 This study aimed to identify communication barriers and opportunities for improvement by comparing clinicians' understanding and management of pain with reports of patients' lived experiences.

Methods

Semi-structured interviews with nurses and doctors (n=13), analysed alongside 83 pre-existing transcripts from nurses, doctors and patients in other IBD-pain studies using reflective thematic analysis, led to the identification of three primary themes.

Results

Clinicians reported that pain is a stronger indicator of complications in Crohn’s disease than in ulcerative colitis, leading them to ask about it more often in consultation with patients with Crohn’s disease. However, patients felt that pain inquiries were minimal in both conditions. Discrepancies between intentions and practices were noted, with clinicians showing empathy for pain but not following through on its management.

The study revealed power imbalances in the clinician-patient relationship. Clinicians were perceived by patients as having the authority to make decisions and prioritise disease management. Limited time and restricted options for pain management exacerbated imbalances, leading some clinicians to default to secondary irritable bowel syndrome diagnoses when pain persisted during remission. Inadequate acknowledgment of pain contributed to patients feeling uncared for.

Addressing pain in patients who do not complain posed challenges. Some patients refrained from reporting pain due to a need to remain positive, concerns about clinician busyness, or the hassle of additional tests. One clinician expressed not wanting to exacerbate the pain by drawing attention to it. However, avoiding discussion is likely counterproductive with some clinicians relating that educating patients on "normal" and "abnormal" symptoms could be effective, although time constraints posed challenges.

Conclusion

The study emphasises the importance of comprehensive pain evaluation and management, advocating for more open dialogues between clinicians and patients. Understanding the biological basis of pain and the role of dysregulated modulation in maintaining it may help bridge the gap in perspectives.

References

1.Zeitz J, Ak M, Muller-Mottet S, et al. Pain in IBD Patients: Very Frequent and Frequently Insufficiently Taken into Account. PLoS One. 2016;11(6):e0156666. doi:10.1371/journal.pone.01566662.

2.Hawthorne AB, Glatter J, Blackwell J, et al. Inflammatory bowel disease patient-reported quality assessment should drive service improvement: A national survey of UK IBD units and patients. Alimentary Pharmacology & Therapeutics. 2022;doi:10.1111/apt.170423.

3.Huisman D, Fernhout F, Moxham F, Norton C, Bannister K, Moss-Morris R. Managing patients’ reports of abdominal pain and irritable bowel syndrome-like symptoms during quiescent inflammatory bowel disease: a role for shared sensemaking. British Journal of Pain. 2024;doi:10.1177/204946372412308074.

4.Bullo S. "I feel like I'm being stabbed by a thousand tiny men": The challenges of communicating endometriosis pain. Health (London). Sep 2020;24(5):476-492. doi:10.1177/1363459318817943