Fatigue, pain and urgency are a huge burden for many people living with inflammatory bowel disease and can persist even when in remission. IBD-BOOST aims to develop and evaluate ways to improve the well-being of people who experience them.
Inflammatory Bowel Disease (IBD) affects 300,000 people in the UK alone, 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. IBD research has mostly focused on controlling inflammation. However, many people report continuing IBD-related fatigue, abdominal pain and urgency (urgent need to use the toilet) and incontinence when in remission. These symptoms limit peoples’ quality of life and ability to work and socialise.
Our research programme focuses on the development and evaluation of management interventions to improve the well-being of people with IBD by relieving these most common and troublesome chronic symptoms and enhancing quality of life.
Chief Investigator, Professor Christine Norton
The IBD-BOOST Programme is led by Christine Norton, Professor of Nursing in the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King's. The programme co-investigators include academics, clinicians, people living with IBD and members of Crohn’s and Colitis UK.
Find out more about our individual studies in the projects tab below
Publications
Sweeney, L., Windgassen, S., Artom, M., Norton, C., Fawson, S., & Moss-Morris, R. (2022). A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development. JMIR Formative Research, 6(5), e33001.
Sweeney, L., Moss-Morris, R., Czuber-Dochan, W. et al. Pain management in inflammatory bowel disease: feasibility of an online therapist-supported CBT-based self-management intervention. Pilot Feasibility Stud 7, 95 (2021).
Matthias C, Fawson S, Yan L, Sweeney L, Moss-Morris R, Norton C. Inflammatory bowel disease nurses' views on taking on a new role to support an online self-management programme for symptoms of fatigue, pain and urgency: a qualitative study to maximise intervention acceptance. Gastrointestinal Nursing. 2021;19(9):28-35.
Norton C, Syred J, Kerry S, Artom M, Sweeney L, Hart A, et al. Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial. Trials. 2021;22(https://doi.org/10.1186/s13063-021-05466-4).
Fawson S, Dibley L, Smith K, Batista J, Artom M, Windgassen S, et al. Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants Digestive Diseases and Sciences. 2021;https://doi.org/10.1007/s10620-021-07109-9.
Dibley L, Khoshaba B, Artom M, Van Loo V, Sweeney L, Syred J, et al. Patient strategies for managing the vicious cycle of fatigue, pain and urgency in Inflammatory Bowel Disease: impact, planning and support. Dig Dis Sci. 2021;doi: 10.1007/s10620-020-06698-1:3330-42.
Activities
IBD-BOOST at ECCO 2020
IBD-BOOST presented the findings of the symptom self-management intervention development at the European Crohns and Colitis Organisation (ECCO) Annual conference in Vienna. Three posters were also accepted. These included (i) Patient-identified symptom management techniques to inform the content and functionality of an online self-management programme: an exploratory qualitative study. (ii) Developing a digital self-management intervention for symptoms of fatigue, pain and urgency in inflammatory bowel disease (iii) Pain management in inflammatory bowel disease: feasibility of an online therapist-supported CBT self-management intervention
How you can get involved with our work
We are looking for volunteers to help us with various patient and public involvement (PPI) activities across our research programme. These vary from roles you can do at home such as proof reading materials we create such as leaflets and posters and providing feedback via email, to more hands on roles such as helping us run groups, being a patient advocate etc. The amount of time you wish to give is entirely up to you, and we can refund all expenses such as travel and food. If this sounds like something you might be interested in, get in touch with us to find out more by emailing us at ibd-boost@kcl.ac.uk
Key Dates
-
November 2017: Programme Begins
-
February 2018: ‘BOOST’ Intervention development to begin
-
February 2019: IBD-BOOST Survey open to recruitment
-
June 2019: ‘BOOST’ Intervention Development complete
-
December 2019: Trial of intervention open to recruitment
-
February 2020: IBD-BOOST Optimise open to recruitment
-
June 2021: All studies to finish Recruitment
-
June 2022: All follow-up to finish.
-
November 2022: Final report to be published
Publications
Sweeney, L., Windgassen, S., Artom, M., Norton, C., Fawson, S., & Moss-Morris, R. (2022). A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development. JMIR Formative Research, 6(5), e33001.
Sweeney, L., Moss-Morris, R., Czuber-Dochan, W. et al. Pain management in inflammatory bowel disease: feasibility of an online therapist-supported CBT-based self-management intervention. Pilot Feasibility Stud 7, 95 (2021).
Matthias C, Fawson S, Yan L, Sweeney L, Moss-Morris R, Norton C. Inflammatory bowel disease nurses' views on taking on a new role to support an online self-management programme for symptoms of fatigue, pain and urgency: a qualitative study to maximise intervention acceptance. Gastrointestinal Nursing. 2021;19(9):28-35.
Norton C, Syred J, Kerry S, Artom M, Sweeney L, Hart A, et al. Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial. Trials. 2021;22(https://doi.org/10.1186/s13063-021-05466-4).
Fawson S, Dibley L, Smith K, Batista J, Artom M, Windgassen S, et al. Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants Digestive Diseases and Sciences. 2021;https://doi.org/10.1007/s10620-021-07109-9.
Dibley L, Khoshaba B, Artom M, Van Loo V, Sweeney L, Syred J, et al. Patient strategies for managing the vicious cycle of fatigue, pain and urgency in Inflammatory Bowel Disease: impact, planning and support. Dig Dis Sci. 2021;doi: 10.1007/s10620-020-06698-1:3330-42.
Activities
IBD-BOOST at ECCO 2020
IBD-BOOST presented the findings of the symptom self-management intervention development at the European Crohns and Colitis Organisation (ECCO) Annual conference in Vienna. Three posters were also accepted. These included (i) Patient-identified symptom management techniques to inform the content and functionality of an online self-management programme: an exploratory qualitative study. (ii) Developing a digital self-management intervention for symptoms of fatigue, pain and urgency in inflammatory bowel disease (iii) Pain management in inflammatory bowel disease: feasibility of an online therapist-supported CBT self-management intervention
How you can get involved with our work
We are looking for volunteers to help us with various patient and public involvement (PPI) activities across our research programme. These vary from roles you can do at home such as proof reading materials we create such as leaflets and posters and providing feedback via email, to more hands on roles such as helping us run groups, being a patient advocate etc. The amount of time you wish to give is entirely up to you, and we can refund all expenses such as travel and food. If this sounds like something you might be interested in, get in touch with us to find out more by emailing us at ibd-boost@kcl.ac.uk
Key Dates
-
November 2017: Programme Begins
-
February 2018: ‘BOOST’ Intervention development to begin
-
February 2019: IBD-BOOST Survey open to recruitment
-
June 2019: ‘BOOST’ Intervention Development complete
-
December 2019: Trial of intervention open to recruitment
-
February 2020: IBD-BOOST Optimise open to recruitment
-
June 2021: All studies to finish Recruitment
-
June 2022: All follow-up to finish.
-
November 2022: Final report to be published
Our Partners
London North West University Healthcare NHS Trust
Pragmatic Clinical Trials Unit
Contact us
IBD-BOOST
Florence Nightingale Faculty of Nursing,
Midwifery & Palliative Care
King's College London
James Clerk Maxwell Building
57 Waterloo Road
London
SE1 8WA