Determining patient needs for multiple symptoms of IBD V1.1
Research type
Research Study
Full title
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. STAGE ONE: Focus groups and one to one interviews to determine patient needs and preferences for multiple symptoms of IBD
IRAS ID
228902
Contact name
Christine Norton
Contact email
Sponsor organisation
London North West Healthcare NHS Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
The present application is Stage 1 of an NIHR Programme Grant. Overall Aims of the Programme Grant:
To improve the well-being of people with inflammatory bowel disease (IBD) by relieving their most common and troublesome chronic symptoms (fatigue, abdominal pain, incontinence), thus enhancing their quality of life.Aims: Qualitative study to explore the views of people with IBD on content and format for online self-management of fatigue, abdominal pain and incontinence
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 IBD research focuses 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
Focus Groups (up to 80 participants) and one to one interviews (up to 20 participants) with people with IBD will determine their priorities in relation to symptoms of a) fatigue, b) pain c) incontinence and d) multiple symptoms. What they find helps, and their preferences and suggestions for interventions.We will recruit people from NHS clinics and from members of our partner charity Crohn's & Colitis UK (CCUK) via their website and social media. Analysis of the content of these interviews will be used to help guide the next stage of our programme: to design, with people with IBD, and with health professionals, an online self-management intervention for these symptoms.
REC name
Wales REC 4
REC reference
17/WA/0349
Date of REC Opinion
2 Nov 2017
REC opinion
Favourable Opinion