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
Description: Aims To improve the well-being of people with inflammatory bowel disease (IBD) by relieving their most common and troublesome chronic symptoms (fatigue, abdominal pain, faecal urgency/incontinence), thus enhancing their quality of life. Background IBD affects 300,000 people in the UK, causing unpredictable bouts of gut inflammation, with acute illness, diarrhoea, and pain. There is no current cure for IBD, which usually starts in childhood or as a young adult. Most previous IBD research has focused on controlling inflammation. However, many people report continuing IBD-related fatigue (41%), abdominal pain (62%) and difficulty with continence (up to 75%) when in remission. These symptoms limit peoples quality of life and ability to work and socialise. Patients feel these symptoms are not taken seriously by health professionals and that little help is given. Little research has been done on how to improve these symptoms. Design and methods used Interviews with people with IBD will determine their priorities in relation to these symptoms, what they find helps, and their preferences and suggestions for interventions. Working with people with IBD and health professionals we will design a checklist to identify underlying medical causes for symptoms (e.g. anaemia causing fatigue). We will screen 1050 people who want help for symptoms using this checklist, and treat those with any causes found to see if symptoms and quality of life improve. We will work with people with IBD to co-design an online intervention for these symptoms. Those without medical causes for symptoms will enter a randomised trial comparing online self-management with IBD nurse support, or care as usual in 680 people. This will determine if supported online self-management improves quality of life and symptoms. Patient and public involvement People with IBD have prioritised these symptoms via a consensus exercise, and as evidenced by Crohn s & Colitis UK (CCUK) leading our previous work on IBD-fatigue and funding continence and online intervention studies. CCUK Policy lead (HT) and former Vice-Chair (AV) are co-applicants and have been closely involved in developing this application. Patients have worked with us on developing questionnaires for IBD-fatigue and incontinence and on checklists and interventions for fatigue, pain, distress and incontinence. They have suggested our outcome measures. We plan close partnership throughout the programme, with patients chairing our management and steering committees, patients participating in co-designing the intervention and leading dissemination. Dissemination Led by DM, Communications Manager at CCUK (social media reach 1million+ weekly). Apart from publications and conference presentations, there will be extensive outputs for patients, including a blog and twitter feed allowing people to follow our progress. We will develop a patient-friendly website, with a self-assessment checklist, which will eventually host the online intervention. See http://www.crohnsandcolitis.org.uk/about-inflammatory-boweldisease/publications/fatigue-ibd; http://s3-eu-west- 1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/managing-bowel-incontinence-in-IBD.pdf; and http://www.fatigueinibd.co.uk/ for previous collaborative outputs.
Amount: £2,375,000
Funding type: research
Funder scheme: Programme Grants for Applied Research
Start date: 2017-11-01
End date: 2024-08-31
Investigator: Christine Norton
Institution: LONDON NORTH WEST UNIVERSITY HEALTHCARE NHS TRUST
Funded outputs count: 24
Funder award ID: RP-PG-0216-20001
OpenAlex ID: G2633018317