People with IBD reported that fatigue, pain and urgency/FI are common and they wanted help for them, but health professionals lack capacity to offer this. Over half of people with IBD have FI, and 1 in 10 have combined fatigue, pain and incontinence. Nearly a third want help for all three. An online self-management intervention was preferred by patients.
Many patients had potentially reversible medical issues which had not been previously addressed. Screening using a checklist and algorithm was feasible and identified around 40%, who could benefit from a review and optimisation of their medical treatment.
Our RCT did not find that the IBD-BOOST online programme provided benefit over CAU for these symptoms. IBD-BOOST had a low compliance and did not improve disease-specific QoL or GRSR in IBD patients with fatigue, pain and/or incontinence compared with CAU, but it may help symptoms in people who comply with the programme. However, some benefit was observed on secondary outcomes, including incontinence and generic health-related QoL, and costs with intervention were lower, although not statistically significant, resulting in a potentially cost-effective intervention, especially if adherence could be improved and the intervention be targeted to those most likely to benefit.
Future work should explore targeting the intervention to specific subgroups within IBD and improving adherence to digital interventions. Furthermore, longitudinal studies of detailed phenotyping and endotyping of patients with newly diagnosed IBD to identify risk factors for development of chronic symptoms and to identify biomarkers to facilitate early interventions are urgently needed.