Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey

Abstract Background and Aims 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, r...

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Main Authors: Ailsa Hart, Laura Miller, Fionn Cléirigh Büttner, Thomas Hamborg, Sonia Saxena, Richard C. G. Pollok, Imogen Stagg, Vari Wileman, Qasim Aziz, Wladyslawa Czuber-Dochan, Lesley Dibley, Borislava Mihaylova, Rona Moss-Morris, Chris Roukas, Christine Norton
Format: Article
Language:English
Published: BMC 2024-12-01
Series:BMC Gastroenterology
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Online Access:https://doi.org/10.1186/s12876-024-03570-8
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author Ailsa Hart
Laura Miller
Fionn Cléirigh Büttner
Thomas Hamborg
Sonia Saxena
Richard C. G. Pollok
Imogen Stagg
Vari Wileman
Qasim Aziz
Wladyslawa Czuber-Dochan
Lesley Dibley
Borislava Mihaylova
Rona Moss-Morris
Chris Roukas
Christine Norton
author_facet Ailsa Hart
Laura Miller
Fionn Cléirigh Büttner
Thomas Hamborg
Sonia Saxena
Richard C. G. Pollok
Imogen Stagg
Vari Wileman
Qasim Aziz
Wladyslawa Czuber-Dochan
Lesley Dibley
Borislava Mihaylova
Rona Moss-Morris
Chris Roukas
Christine Norton
author_sort Ailsa Hart
collection DOAJ
description Abstract Background and Aims 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. Statistical analysis used descriptive statistics to report presence of symptoms and Pearson correlation coefficients were calculated. 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 correlated (Pearson correlation coefficient 0.57); both fatigue and pain had a lower correlation with faecal incontinence (0.43 and 0.46 respectively). 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 (vs. ulcerative colitis), IBD activity, IBD Control score, anxiety, depression, and history of surgery (all p ≤ 0.0001). 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.
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spelling doaj-art-b0f3e155e8544a00bec919d24038a73a2025-01-05T12:32:05ZengBMCBMC Gastroenterology1471-230X2024-12-0124111310.1186/s12876-024-03570-8Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional surveyAilsa Hart0Laura Miller1Fionn Cléirigh Büttner2Thomas Hamborg3Sonia Saxena4Richard C. G. Pollok5Imogen Stagg6Vari Wileman7Qasim Aziz8Wladyslawa Czuber-Dochan9Lesley Dibley10Borislava Mihaylova11Rona Moss-Morris12Chris Roukas13Christine Norton14St Mark’s Hospital Central MiddlesexUnit for Social and Community Psychiatry, Centre for Psychiatry and Mental Health (CPMH), Wolfson Institute of Population Health, Queen Mary University of London, Newham Centre for Mental HealthPragmatic Clinical Trials Unit, Centre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of LondonPragmatic Clinical Trials Unit, Centre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of LondonSchool for Public Health, Imperial College LondonDept. Gastroenterology, St George’s University of London and NHS Trust, St George’s HospitalSt Mark’s Hospital Central MiddlesexDepartment of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, Guy’s Hospital CampusCentre for Neuroscience, Surgery and Trauma, Wingate Institute and Blizard Institute, Queen Mary University of LondonFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College LondonInstitute for Lifecourse Development, Faculty of Education, Health and Human Sciences, University of GreenwichHealth Economics and Policy Research Unit, Wolfson Institute of Population Health, Queen Mary University of LondonDepartment of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, Guy’s Hospital CampusHealth Economics and Policy Research Unit, Wolfson Institute of Population Health, Queen Mary University of LondonFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College LondonAbstract Background and Aims 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. Statistical analysis used descriptive statistics to report presence of symptoms and Pearson correlation coefficients were calculated. 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 correlated (Pearson correlation coefficient 0.57); both fatigue and pain had a lower correlation with faecal incontinence (0.43 and 0.46 respectively). 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 (vs. ulcerative colitis), IBD activity, IBD Control score, anxiety, depression, and history of surgery (all p ≤ 0.0001). 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.https://doi.org/10.1186/s12876-024-03570-8Inflammatory bowel diseaseCrohn’s diseaseUlcerative colitisFatiguePainFaecal incontinence
spellingShingle Ailsa Hart
Laura Miller
Fionn Cléirigh Büttner
Thomas Hamborg
Sonia Saxena
Richard C. G. Pollok
Imogen Stagg
Vari Wileman
Qasim Aziz
Wladyslawa Czuber-Dochan
Lesley Dibley
Borislava Mihaylova
Rona Moss-Morris
Chris Roukas
Christine Norton
Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
BMC Gastroenterology
Inflammatory bowel disease
Crohn’s disease
Ulcerative colitis
Fatigue
Pain
Faecal incontinence
title Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
title_full Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
title_fullStr Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
title_full_unstemmed Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
title_short Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need: a national cross-sectional survey
title_sort fatigue pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need a national cross sectional survey
topic Inflammatory bowel disease
Crohn’s disease
Ulcerative colitis
Fatigue
Pain
Faecal incontinence
url https://doi.org/10.1186/s12876-024-03570-8
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