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, 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.

Keywords: Crohn’s disease; Faecal incontinence; Fatigue; Inflammatory bowel disease; Pain; Ulcerative colitis.

Fig. 1

flow chart of responses to the survey

Fig. 2

Co-occurrence of IBD-related symptoms among survey respondents. Frequencies reported within each symptom “circle” of the Venn diagram sum to the frequencies reported in Additional file 3, Table S7 for IBD-related (i) pain (n = 1,769), (ii) fatigue (n = 2,036), and (iii) incontinence (n = 4,562). The integer outside the Venn diagram (n = 3,111) represents participants (i) reporting no IBD-related symptoms (n = 2,462) OR (ii) with missing data for at least one IBD-related symptom AND reporting no for other IBD-related symptoms (n = 649)

Fig. 3

People reporting wanting help for symptoms. Frequencies reported within each symptom “circle” of the Venn diagram sum to the frequencies reported in Additional file 3, Table S8 for IBD-related (i) pain (n = 3,470), (ii) fatigue (n = 4,622), and (iii) incontinence (n = 4,121). Percentages reported in the Venn diagram do not agree with percentages reported in Additional file 3, Table S8 because a different denominator value is used for each (combination of) IBD-related symptom(s) in Additional file 3, Table S8 whereas the same denominator (N = 8,486) is used for the Venn diagram. The integer outside the Venn diagram (n = 2,689) represents participants (i) not wanting help for IBD-related symptoms (n = 2,276) OR (ii) with missing data on wanting help for at least one IBD-related symptom reporting not wanting help for other IBD-related symptoms (n = 413)