Our researchers on IBD-BOOST and how you can get involved

17 August 2021

Fatigue, pain, and urgency are experienced by lots of people with Crohn’s and Colitis. For many, these symptoms are a daily battle and can significantly affect their lives and wellbeing.

We are therefore proud and committed to be supporting researchers with IBD-BOOST. This is a series of projects which aim to better understand and help people with Crohn’s or colitis who experience these key symptoms of fatigue, pain, and urgency/incontinence.

Professor Christine Norton tells us about the research currently going on in IBD-BOOST.

We know from speaking to people and conducting research that fatigue, pain, and urgency/incontinence are some of the biggest concerns and have the greatest impact on lives for people with Crohn’s and Colitis. 

Professor Christine Norton
Chief Investigator for IBD-BOOST

What problem is the research hoping to solve?

Throughout periods of flaring and remission, many people experience daily symptoms without a clear explanation as to why they have these or how to best manage them. This can understandably have a huge effect on their emotional and physical wellbeing. While medication can be helpful for treating many aspects of Crohn’s and Colitis, drugs aren’t always effective in helping people with the day to day, long-term management of these symptoms.

We know that people want help with these symptoms, but don’t necessarily want to attend multiple, separate hospital appointments. We hope that IBD-BOOST will provide a better understanding of fatigue, pain, and urgency/incontinence, and effective ways to manage these.

So, what is IBD-BOOST?

IBD-BOOST is a series of projects funded by the National Institute of Health Research (NIHR) to research these three specific symptoms of Crohn’s and Colitis. They include a survey, a medical checklist study and a randomised controlled trial that tests the effects of an online, tailored self-management programme. This particular study is guided by principles of cognitive behavioural therapy (CBT).

The purpose of the survey is to find out how many people with Crohn’s or Colitis experience fatigue, pain and urgency, as well as how many of these want help managing these symptoms. For the trial, we are exploring whether CBT could support people to develop a range of strategies that help minimise the impact of these symptoms. This might include developing techniques to improve sleep, maintain consistent levels of activity, and manage stressful feelings or thoughts that may understandably arise from having living with Crohn's or Colitis. We know that these can all affect symptoms like fatigue, pain and urgency from research carried out on other long-term conditions.

I got involved in co-developing the IBD-BOOST programme through Crohn’s & Colitis UK. I wanted to support research that is going to help people manage psychological and emotional symptoms as well as physical ones. Providing access to resources can make life more manageable, and increase the general understanding of the impact that managing a chronic illness has on day to day life.

BOOST patient representative, living with Crohn's

Tell us a bit about the project so far.

We have worked closely with people living with Crohn’s and Colitis every step of the way in this research, including when we were developing the intervention. Their feedback and pilot testing were an invaluable help. Since starting the programme, we have recruited over 6,000 people into our survey and over 400 into our trial so far. We are keen to invite anyone with Crohn’s or Colitis to take part in our survey so that we can understand as much as we can about these symptoms. 

I wanted to take part in the development of the BOOST programme because there is a huge gap between hospital and home. Learning about the needs, responses and practical implications of having such an embarrassing condition can only help. Managing pain, fatigue and urgency can at times seem impossible, but with careful understanding and planning one can use strategies that help us to continue with daily life so that symptoms have a less negative impact

BOOST patient representative, living with Crohn's

Who can take part?

Anyone with Crohn’s or Colitis can take part in our survey, even if you don’t have any symptoms or have had a colectomy. If you complete the survey and want to continue taking part in the next stage of our study, then you might be offered a new way of managing these symptoms or you might not, and we may not be able to include everyone. 

Complete the survey

And what will taking part in the research involve?

We will be asking people with a diagnosis of Crohn’s disease, ulcerative colitis, or another type of Inflammatory Bowel Disease (IBD) to take part in an online survey questionnaire, which will take around 20 minutes. If you are invited to take part in the medical checklist study, you will be asked to complete a form and will be contacted by a nurse to discuss your responses with you. If you are invited to take part in the trial, you will be allocated to either receive the self-management programme with facilitator support, or to a control group where you will receive access to the programme without a facilitator after a year.

Meet the team

Professor Rona Moss-Morris

Intervention development lead

Laura Miller

Programme manager

Dr Louise Sweeney

Research associate

Imogen Stagg

Research nurse

Serena McGuinness

Research assistant

If you have any questions please feel free to get in touch with us at ibd-boost@kcl.ac.uk or call 0207 848 3318. Our research team will be happy to help.