IBD-BOOST: SURVEY
Research type
Research Study
Full title
What is the relationship between fatigue, pain and urgency in people with inflammatory bowel disease? The IBD-BOOST Survey
IRAS ID
246185
Contact name
Alan Warnes
Contact email
Sponsor organisation
London North West University Healthcare NHS Trust
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
Inflammatory Bowel Disease (IBD) is a condition that causes inflammation of the digestive system (gut) and affects 300,000 people in the UK. The inflammation is unpredictable and many people with IBD live with fatigue, chronic abdominal pain, and bowel urgency/incontinence. There is no current cure for IBD, which usually starts in childhood or as a young adult. Most previous IBD research has focused on controlling inflammation. However, many people with IBD report fatigue, abdominal pain and difficulty with continence even when IBD is in remission. These symptoms limit peoples’ quality of life and ability to work and socialise. We know little about the how these symptoms cluster (co-exist in the same individuals), what health and demographic and socio-economic factors they are associated with and how many people with IBD want help with these symptoms.
This survey aims to describe the inter-relationship of the symptoms, their prevalence and associations with quality of life, depression, anxiety, disease activity, disease history and demographic and lifestyle factors.
We will recruit an unselected sample of 6,250 people with IBD to complete a survey. A link to the online survey will emailed or texted or a hard copy sent in the post by the participants care team inviting them to the study.
We will collect data using validated scales on pain, fatigue, urgency/incontinence, quality of life, control of their IBD and how active the disease is. We will also collect data on their health, demographics and lifestyle.
This analysis aims to provide evidence that will guide IBD clinical services on addressing these symptoms. Additionally, participants who have symptoms, express a wish for support and consent to being contacted for future studies will be invited to the next stage of the research programme.
Results Summary
The co-existence of fatigue, pain and faecal incontinence in people with Inflammatory Bowel Disease (IBD) is unknown. We aimed to determine the presence of and relationship between these symptoms and patients’ desire for intervention.
Methods:
Adults with IBD in the UK, recruited from clinics, the national IBD-BioResource, a patient charity and social media sources, completed PROMIS validated patient-reported questionnaires to identify fatigue, pain and faecal incontinence, in addition to symptom severity and impact, disease activity, anxiety and depression questionnaires and questions about their desire for help with these symptoms.
Results:
Of 8486 responses, 54% reported faecal incontinence, 24% reported fatigue, and 21% reported pain; 10% reported all three symptoms in the past 7 days. Only 29% reported none of these symptoms. Fatigue and pain were moderately related to each other; both fatigue and pain had a lower correlation with faecal incontinence. On a 0-10 scale for severity, participants scored fatigue highest, followed by incontinence then pain. For impact, participants scored incontinence highest, followed by fatigue then pain. 56% reported depression (27% with clinically relevant levels) and 49% reported anxiety (20% with clinically relevant levels); 23% had previously medically diagnosed mental health disorders. 56% of respondents “definitely” wanted help for fatigue; 53% for incontinence; 42% for pain; 29% “definitely” wanted help with all three symptoms. Factors associated with all three symptoms were Crohn’s disease (compared with ulcerative colitis), IBD activity, IBD Control score, anxiety, depression, and history of surgery.
Conclusions: Fatigue, pain and incontinence are common in IBD and patients desire help for these symptoms, currently a substantial unmet need. Anxiety and depression are common, are underdiagnosed, and are independently associated with these symptoms.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
18/NW/0613
Date of REC Opinion
19 Sep 2018
REC opinion
Favourable Opinion