The symptoms of fatigue, pain and urgency/incontinence are ever-present concerns for many people living with IBD. Help from clinical staff is necessarily limited to addressing the clinically essential aspects of monitoring and managing inflammation, immunosuppression and associated extra-intestinal complications, often because of shortage of time and understaffing. However, with optimal resourcing, there would be many opportunities for health professionals to offer additional support more focused on behavioural management of symptoms and adjusting to this challenging illness, with access to dedicated specialist nurses, psychologists, pharmacists and dieticians in every IBD service.
A post-diagnosis starter programme, such as, for example, for people with diabetes, could facilitate acquisition of core skills and knowledge in a timely manner, leading to better symptom management, sooner. Peer-to-peer support is often suggested by patients, but evidence on the value of this is limited and it can be onerous to set up and monitor.
In the report State of IBD Care in the UK,46 a consortium of organisations, including CCUK, highlighted that pain and fatigue should be investigated and managed through a multidisciplinary approach, incorporating pharmacological, non-pharmacological and psychological interventions where appropriate. Non-pharmacological and psychological approaches require trained HCPs for effective delivery, ideally within a multidisciplinary team that includes IBD specialist nurses and psychologists. However, only 1 in 5 services in the UK has the recommended number of IBD specialist nurses (recommended ratio 1 per 1000 patients).46 Addressing this shortfall, ensuring that every person with IBD has access to a specialist nurse, would significantly improve patient adjustment and support progression towards competent self-management and self-care, particularly in relation to these three core symptoms.
Even with adequate nursing provision, the use of behavioural methods, such as those included in IBD-BOOST, would require additional training for IBD nurses, alongside ongoing supervision aligned with standard practice for those delivering psychological support. Ideally, this training and supervision would be provided by psychologists with expertise in cognitive–behavioural therapy approaches and a specialism in psycho-gastroenterology.
The State of Care reports further underscores the issue, noting that only 2% of IBD specialist teams have sufficient access to psychologists. These critical workforce gaps highlight the urgent need for scalable digital therapies. However, the IBD-BOOST findings make it clear that such interventions must be offered with sufficient support from trained HCPs to maintain engagement, particularly for patients managing a difficult, relapsing-remitting condition. This may require a more centralised and cost-efficient model for delivering HCP-supported interventions, rather than embedding such provision within every individual service.
The RCT reported no statistically significant difference in the two primary outcomes and improvements in FI score and general health-related QoL at 6 months; not statistically significant improvements were also noted for other secondary outcomes. The economic evaluation reported more QALYs, and not statistically significantly lower healthcare costs and other costs among participants allocated to IBD-BOOST in the trial, that resulted an indication of cost-effectiveness. These results are generally consistent. Unlike hypotheses testing in trials, economic evaluations summarise the evidence for an intervention’s effects on QALYs and costs and their uncertainties into the incremental cost-effectiveness ratios. In the present study, the difference in costs between study arms, while uncertain, together with the improvement in QALYs, resulted in an indication of cost-effectiveness. Providing explanatory models in the IBD-BOOST intervention to help participants understand why symptoms may persist during disease remission, alongside self-management methods, may have contributed to the lower healthcare utilisation and higher QoL in the IBD-BOOST group. The intervention’s cost-effectiveness may also have been driven by its scalable digital format and minimal clinician input, making it a financially viable option despite the absence of broad clinical significance. Moving forward, there is likely a more optimal ‘sweet spot’ between clinical and cost-effectiveness, where modest additional investment in HCP input could enhance patient engagement and clinical outcomes while still maintaining overall cost efficiency.