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. 2025 Apr;13(3):364-375.
doi: 10.1002/ueg2.12668. Epub 2024 Oct 19.

Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross-sectional survey

Chris Roukas  1 , Laura Miller  2 , Fionn Cléirigh Büttner  2 , Thomas Hamborg  2 , Imogen Stagg  3   4 , Alisa Hart  4 , Vladimir Sergeevich Gordeev  1   2 , James O Lindsay  5 , Christine Norton  3 , Borislava Mihaylova  1   6
Affiliations

Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross-sectional survey

Chris Roukas et al. United European Gastroenterol J. 2025 Apr.

Abstract

Background and aims: People with inflammatory bowel disease (IBD) often experience pain, fatigue and bowel incontinence and are at an increased risk of anxiety and depression. Our aim was to assess the impact of these symptoms on health-related quality of life (QoL) in IBD.

Methods: In the IBD-BOOST survey, over 26,000 people with IBD across the UK were approached; 8486 participant-completed surveys were returned. Participants' QoL was measured using the EQ-5D-5L questionnaire and their QoL was calculated on a scale ranging from 1 (perfect health) to -0.594 (worst health). Item non-response was imputed. Stages of linear regression models assessed the associations of symptoms with QoL controlling for IBD type, socio-demographic characteristics, co-morbidities and, in further analysis, for IBD activity and IBD control.

Results: The EQ-5D-5L questionnaire was fully completed by 8093 (95.4%) participants (mean age of 50 years [SD 15]; 49% with Crohn's disease). The mean QoL was 0.76 (SD 0.23). From the three IBD-related symptoms, pain was associated with the largest QoL decrement (-0.159), followed by fatigue (-0.140) and bowel incontinence (-0.048). Co-occurrence of pain and fatigue further reduced QoL. Clear graded associations were observed between symptom severity and QoL decrements (all trend p < 0.001). Depression and anxiety were also associated with significant QoL decrements (-0.102 and -0.110 for moderate-to-severe anxiety and moderately severe depression, respectively). Worse IBD control and higher IBD activity were associated with lower QoL.

Conclusions: We report strong associations between symptoms of pain, fatigue, bowel incontinence, anxiety, depression, and their severity and reduced QoL in IBD. These estimates could inform future IBD management interventions.

Keywords: Crohn's disease; bowel incontinence; fatigue; inflammatory bowel disease; pain; quality of life; ulcerative colitis.

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Conflict of interest statement

CN declares the following conflicts of interest: Speaker fees from Janssen, WebMD, Medscape, Merck Pharmaceutical, Tillotts Pharma UK. Pfizer advisory board. AH reports consulting fees from AbbVie, BMS, Celltrion, Dr Falk Pharma, Galapagos, Lilly, Janssen, Pfizer and Takeda and has received speaker fees and sponsorship for academic meetings from Abbvie, BMS, Celltrion, Galapagos, Lilly, Jannsen, Pfizer and Takeda. JOL served as a consultant and an advisory board participant for AbbVie, Bristol Myers Squibb, Celgene, Celltrion, Eli Lilly, Engytix, Ferring Pharmaceuticals, Galapagos, Gilead, GSK, Janssen, MSD, Napp, Pfizer, Shire, Takeda, and Vifor Pharma; has received speaker fees and sponsorship for academic meetings from AbbVie, BMS, Celltrion, Ferring Pharmaceuticals, Janssen, MSD, Napp, Norgine, Pfizer, Shire, Tillotts Pharma, and Takeda; and has received investigator‐led research grants from AbbVie, Gilead, Pfizer, Shire, and Takeda. Other Authors declare no conflicts of interest related to this work.

Figures

FIGURE 1
FIGURE 1
Recruitment of IBD‐BOOST Survey participants. IBD, inflammatory bowel disease.
FIGURE 2
FIGURE 2
Co‐occurrence of pain, fatigue and bowel incontinence among IBD‐BOOST Survey participants with complete data. Participants with any missing data about fatigue, pain, and bowel incontinence symptoms (n = 1162) excluded. Number (%) presented. IBD, inflammatory bowel disease.
FIGURE 3
FIGURE 3
Distribution of responses to EQ‐5D‐5L questionnaire by (co‐)occurrence of pain, fatigue and bowel incontinence symptoms. Participants with any missing data about pain, fatigue and bowel incontinence symptoms (n = 1162) excluded.
See this image and copyright information in PMC

Comment in

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