IBD-Boost Survey: fatigue pain and urgency in IBD

Study code
NBR34

Lead researcher
Prof. Christine Norton

Study type
Participant re-contact

Institution or company
King's College London

Speciality area
Gastroenterology

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 of Health 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 primary research question for this survey is:

What is the inter-relationship between fatigue, pain and urgency in people with inflammatory bowel disease?

Secondary research questions include what proportion of people with IBD who report fatigue, abdominal pain or faecal urgency/incontinence want support to manage their symptoms?

This is a self-completed survey. People with IBD will be sent an email link to an online version of the survey, or a paper copy by post if they prefer. Questions will include a pain score, fatigue score and continence score, desire for support, quality of life score, depression score, anxiety score, disease activity index, life style questions and demographics.

Results will be analysed to answer our research questions. Those with symptoms and wanting help for them will also have the opportunity to consider participating in our trial of an online self-help programme designed to improve symptoms and quality of life