IBD-Boost Survey: fatigue, pain and urgency in IBD

Summary

In remission, many people with IBD live with fatigue, chronic abdominal pain, and bowel urgency/incontinence. 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%) even when IBD is 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 report that little help is currently given.

The James Lind Alliance IBD research priority-setting consensus put fatigue, pain, and continence in the top 10 issues that IBD patients and clinicians want to be addressed by research.

This survey is stage two of IBD-BOOST, a National Institute for Health and Care Research Programme Grant for Applied Research funded programme. The overall aim of the programme is to improve the quality of life of people with IBD by reducing the burden of IBD-related fatigue, abdominal pain, and urgency/incontinence.

The study received ethics approval in September 2018, and recruitment started in February 2019. Recruitment closed on 31st July 2022, and we have received over 8500 responses.

The IBD-BOOST Survey asked people about their IBD diagnosis, medication and other health issues, their experience of fatigue, pain and urgency, their IBD activity, quality of life, anxiety, depression, and demographic and lifestyle factors. In addition to learning about the impact of fatigue, pain and urgency on people with IBD, the Survey will also allow us to understand more about how these symptoms relate to each other and other factors. This will help to find ways of treating fatigue, pain and urgency and their effects.

The Survey is also part of a research programme testing new ways of managing these symptoms. Now that recruitment has finished the Survey responses will be collated and analysed by the study statistician. The results will be published in a scientific journal so that other people know about it. A summary of the results will be published on the Crohn’s & Colitis UK website.

The information collected about you will be used to support other research in the future, and may be shared anonymously with other researchers. For participants with the IBD BioResource, we have asked for their permission to share their data- this will help to support future research on IBD and add to the information held on the IBD BioResource database.

We would like to thank all of the individuals who volunteered for this Study.

Participation: For this study we recruited 4464 from the IBD BioResource to complete an online survey. 

Organisation: This study is organised by Professor Christine Norton from King's College London.