TY - JOUR
T1 - Fatigue, pain and faecal incontinence in adult inflammatory bowel disease patients and the unmet need
T2 - a national cross-sectional survey
AU - Hart, Ailsa
AU - Miller, Laura
AU - Büttner, Fionn Cléirigh
AU - Hamborg, Thomas
AU - Saxena, Sonia
AU - Pollok, Richard C G
AU - Stagg, Imogen
AU - Wileman, Vari
AU - Aziz, Qasim
AU - Czuber-Dochan, Wladyslawa
AU - Dibley, Lesley
AU - Mihaylova, Borislava
AU - Moss-Morris, Rona
AU - Roukas, Chris
AU - Norton, Christine
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/12/31
Y1 - 2024/12/31
N2 - 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.
AB - 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.
KW - Humans
KW - Fecal Incontinence/psychology
KW - Fatigue/etiology
KW - Male
KW - Female
KW - Cross-Sectional Studies
KW - Adult
KW - Middle Aged
KW - Inflammatory Bowel Diseases/complications
KW - Pain/etiology
KW - United Kingdom/epidemiology
KW - Depression/epidemiology
KW - Surveys and Questionnaires
KW - Anxiety/epidemiology
KW - Severity of Illness Index
KW - Aged
KW - Young Adult
UR - http://www.scopus.com/inward/record.url?scp=85213682515&partnerID=8YFLogxK
U2 - 10.1186/s12876-024-03570-8
DO - 10.1186/s12876-024-03570-8
M3 - Article
C2 - 39736517
SN - 1471-230X
VL - 24
SP - 481
JO - BMC GASTROENTEROLOGY
JF - BMC GASTROENTEROLOGY
IS - 1
M1 - 481
ER -