Patients’ and health professionals’ research priorities for chronic pain associated with inflammatory bowel disease: a co-produced sequential mixed methods Delphi consensus study

Abstract

Objective
Chronic pain in IBD is common and detrimental for quality of life. Recent Cochrane reviews identified a multitude of RCT interventions, but the certainty in the findings is low or very low. We set out to reach a patient and professional co-produced Delphi consensus on treatment priorities, key outcomes, and propose a model for understanding our findings.

Methods
An online survey was co-produced with CCUK and sent to patients and healthcare professionals in two phases, for prioritisastion of treatments andoutcome measures. Phase three consisted of four online group interview, where patients and healthcare professionals discussed the rationale of their choices. Transcripts were combined with the free text data from the Delphi surveys and analysed through a three-phase qualitative technique.

Results
The phase 1 survey was completed by 128 participants (73 patients, 3 carers and 53 health professionals). Diet was the top priority for both patients (n=26/73, 36.1%) and health care professionals (n=29/52, 56.9%). Phase 2 was completed by 68 participants. FODMAP diet, stress management therapy, and relaxation therapy were the top 3 consensus priorities. Phase 3 group interviews were attended by 13 patients and 5 healthcare professionals. Key themes included: The patient as an individual, beliefs and experiences, disease activity influencing therapy choice, accessibility barriers, and quality of life.

Conclusion
Low FODMAP diet, followed by psychological therapies were the highest rated research priorities for healthcare professionals and patients. Funding bodies and researchers should consider these findings, alongside the model for understanding our findings, when making research decisions.