Living well with inflammatory bowel disease: optimising management of symptoms of fatigue, abdominal pain, and faecal urgency/incontinence via tailored online self-management: the IBD-BOOST programme
A third of people with inflammatory bowel disease say fatigue, abdominal pain, and faecal urgency still dominate their daily lives even when their gut inflammation is under control. These three symptoms have been largely ignored in both clinics and research, despite affecting up to 75 percent of the 300,000 people in the UK with IBD. The programme will first survey 12,600 patients to find out how many want help, then test a checklist to identify medically reversible causes in about 1,000 people. The core of the work is a randomised controlled trial of an online self-management programme—built on cognitive behavioural principles and co-designed with patients—plus telephone support from IBD nurses, compared with usual care in 680 people whose medical management has already been optimised. If the intervention works, patients could access tailored symptom management from home without extra clinic visits. The health economics analysis will tell the NHS whether it is cost-effective enough to roll out nationally.
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Aim The aim of the research programme is to improve the quality of life of people with inflammatory bowel disease (IBD) by reducing the burden of symptoms of fatigue, abdominal pain, and faecal urgency/incontinence. Objectives Via four Work Packages (WPs) we will: Develop a theoretically-informed online self-management programme for IBD fatigue, abdominal pain and faecal urgency/incontinence, based on cognitive behavioural principles, our extensive previous work and reviews, input from people with IBD, and what is known to work for these symptoms in other conditions (WP1a). Develop an online training package for IBD nurses to provide telephone support alongside the online self-management programme (WP1b) Conduct a feasibility study to test the intervention developed (WP1c). Develop, in collaboration with people with IBD and expert clinicians, a checklist and management algorithm for potentially medically reversible causes of fatigue, abdominal pain and faecal urgency/incontinence in IBD (WP2a). Survey 12,600 people by brief postal questionnaire to determine what proportion have these symptoms and want help for them (WP2b). Test the checklist and algorithm in ~1,000 people with IBD who want help for symptoms, and determine what proportion have potentially reversible medical causes and if symptoms improve if these are addressed (WP 2c). Conduct a randomised controlled trial (RCT), with an internal pilot, of the intervention developed in WP1 comparing online tailored self-management plus IBD nurse support with care as usual in 680 people who have been screened and medical management has been optimised (if appropriate) in WP2c. Primary outcome at 6 months after randomisation is condition-specific quality of life; secondary outcomes include symptoms and potentially explanatory variables (6 and 12 months) (WP3a & 3b). Conduct health economics analysis to determine if the intervention is cost effective (WP3c). Conduct detailed process evaluation to understand how and why we obtained the results found in the RCT (WP3d). Disseminate our results widely via multiple communication channels and ensure people with IBD and NHS services benefit (WP4). Background and rationale Over 300,000 people in the UK have Inflammatory Bowel Disease (IBD), a lifelong, currently incurable condition, causing unpredictable bouts of gut inflammation. Modern medical management has made great advances in treating these bouts, reducing morbidity and mortality. However, even in remission many people with IBD report persisting troublesome symptoms of fatigue (41%) abdominal pain (62%) and faecal urgency/incontinence (up to 75%) which limit quality of life and ability to work and socialise. These symptoms have largely been neglected in both clinical care and research. People with IBD have embraced self-management of disease, including online interfaces to monitor disease activity. Online tailored self-management with clinician support improves pain and fatigue in other long term conditions but has not been tried in IBD. Our previous work, including developing face to face interventions and patient reported outcome measures for these symptoms in IBD and other conditions ideally places the team to develop and test a clinician-supported online intervention in IBD. Research Plan and methods See participant flow chart (Appendix 2). WP 1: Developing the online self-management intervention WP 1a: Focus group interviews (informing intervention development): 60-80 participants. Analysis by researchers and people with IBD, guided by the Analytical Hierarchy Framework. WP1b: Intervention development. Co-design of an online guided self-management programme. WP1c Feasibility testing of online intervention with 100 volunteers. WP 2: Identifying and optimising medical causes of symptoms WP2a: Checklist and algorithm development. Method: Modified Nominal Group Technique consensus process. WP2b: Postal questionnaire: sent to 12,500 unselected p
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