The relationship between fatigue, pain and urgency in 8486 people with inflammatory bowel disease: a survey

Introduction

Fatigue, pain and faecal incontinence are common in people with Inflammatory Bowel Disease (IBD). Little is known about co-existence of these symptoms and whether people want help for them. Aim: to determine the presence and relationship between fatigue, pain and incontinence in people with IBD, and desire for intervention.

Methods

A purpose-designed survey (online or postal), incorporating validated tools and demographic details, was sent to unselected UK clinic and UK IBD-BioResource adult patients. When the covid-19 pandemic halted clinic recruitment, additional self-selected UK recruits were solicited via social media. Using the PROMIS tools, these definitions were used for presence of symptoms: fatigue: PROMIS fatigue T-score of 60 or more; pain: PROMIS pain intensity T-score of 60 or more; PROMIS bowel incontinence: raw score of 50 or more. Participants reported disease activity using a PRO-2 score, IBD-Control, anxiety, depression and quality of life.

Results

8486 responses were received (7716 online, 770 postal). 4176 reported Crohn’s disease, 4255 had ulcerative colitis or other form of IBD; 3281 men and 4883 women. Median age 51 years (range 18 - 92). 2550 (30%) reported fatigue, 1766 (21%) pain and 4565 (54%) faecal incontinence; 925 (10.9%) reported having all three symptoms (table 1). Participants scored severity and impact of each symptom (scaled 0–10) a mean between 3.3 and 4.8 respectively. 56% of all respondents ‘definitely’ wanted help for fatigue; 42% wanted help for pain; 53% wanted help for incontinence. 29% reported ‘definitely’ wanting help for all three symptoms.

Conclusions

This study confirms that fatigue, pain and urgency are common in IBD and for the first time reports the co-existence and unmet need for help with these symptoms.