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; Laura Miller; Fionn Cléirigh Büttner; Thomas Hamborg; Imogen Stagg; Alisa Hart; Vladimir Sergeevich Gordeev; James O Lindsay; Christine Norton; Borislava Mihaylova

doi:10.1002/ueg2.12668

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, Laura Miller, Fionn Cléirigh Büttner, Thomas Hamborg, Imogen Stagg, Alisa Hart, Vladimir Sergeevich Gordeev, James O Lindsay, Christine Norton, Borislava Mihaylova

Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

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.

Original language	English
Journal	United European Gastroenterology Journal
Early online date	19 Oct 2024
DOIs	https://doi.org/10.1002/ueg2.12668
Publication status	E-pub ahead of print - 19 Oct 2024

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Roukas, C., Miller, L., Cléirigh Büttner, F., Hamborg, T., Stagg, I., Hart, A., Gordeev, V. S., Lindsay, J. O., Norton, C., & Mihaylova, B. (2024). Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross-sectional survey. United European Gastroenterology Journal. Advance online publication. https://doi.org/10.1002/ueg2.12668

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

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.",

author = "Chris Roukas and Laura Miller and {Cl{\'e}irigh B{\"u}ttner}, Fionn and Thomas Hamborg and Imogen Stagg and Alisa Hart and Gordeev, {Vladimir Sergeevich} and Lindsay, {James O} and Christine Norton and Borislava Mihaylova",

note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). United European Gastroenterology Journal published by Wiley Periodicals LLC on behalf of United European Gastroenterology.",

year = "2024",

month = oct,

day = "19",

doi = "10.1002/ueg2.12668",

language = "English",

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T1 - Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease

T2 - A UK cross-sectional survey

AU - Roukas, Chris

AU - Miller, Laura

AU - Cléirigh Büttner, Fionn

AU - Hamborg, Thomas

AU - Stagg, Imogen

AU - Hart, Alisa

AU - Gordeev, Vladimir Sergeevich

AU - Lindsay, James O

AU - Norton, Christine

AU - Mihaylova, Borislava

PY - 2024/10/19

Y1 - 2024/10/19

N2 - 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.

AB - 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.

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U2 - 10.1002/ueg2.12668

DO - 10.1002/ueg2.12668

M3 - Article

C2 - 39425758

SN - 2050-6406

JO - United European Gastroenterology Journal

JF - United European Gastroenterology Journal

ER -

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

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