OC51 Research priorities for patients and professionals in Chronic pain (CP) associated with Inflammatory bowel disease (IBD) – a mixed methods study

Abstract

Introduction In adult IBD cohorts, CP prevalence is 48% in outpatients and 38% in hospital-based cohorts with significant impact on wellbeing, psychological health, social functioning, and higher health care utilisation and costs.1–3 Recent cochrane reviews identified limited evidence for specific treatments with a need for more studies. We set out to reach a patient and professional co-produced consensus on specific priorities, key outcomes and propose a model for understanding these findings.

Methods Initially an online delphi survey was sent out to patients and medical professionals invited from Crohn’s and Colitis UK who hold a large list of patients willing to perform research. Priorities for treatments, outcome measures and reasoning were the focus, with results collated and presented for further comment, as shown in table 1.

In the second phase, four online workshops were organised over a 6-week period by 2 facilitators, each lasting approximately 1 hour, to better understand the rationales for the research priorities chosen and triangulate the findings of phase one.

Results The survey was filled in by 128 participants (73 patients, 3 carers and 52 professionals). Diet was the top priority for both groups (although for patients equal numbers also ranked cannabis and acupuncture as their top choice). For both groups psychosocial therapies were the next priority.

Workshops were attended by 13 patients and 5 professionals. Transcripts were combined with the free text data from the delphi surveys and analysed through a three-phase qualitative technique. We identified 205 themes at the open phase, with 16 macro themes at the axial phase. These were synthetised into a novel model, displayed in figure 1, that highlights how patients and professionals made research prioritisation choices in this context.

Conclusion Low FODMAP diet was the highest rated research priority for both professionals and patients in our survey. For patients the same score was obtained for cannabidiol and acupuncture. This was followed by psychosocial therapies. We would recommend funding bodies and researchers to consider this, as well as the findings of our model, when making choices for future research.