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P259 Systematic assessment of patient self-reported signs, symptoms, and nutrition behaviour

V. Pittet*1, M. H. Maillard2, P. Michetti2, Swiss IBD Cohort Study1

1Institute of Social and Preventive Medicine, Healthcare Evaluation Unit, Lausanne, Switzerland, 2Crohn and Colitis Center, Gastroenterology Beaulieu SA, Lausanne, Switzerland


Symptom-based patient-reported outcomes (PROs) measurements are currently being investigated and re-assessed with the goal to be more appropriate in clinical trials as well as in daily practice. Our objectives were to assess the prevalence of patient-reported signs, symptoms - as collected in traditional disease activity scores for CD and UC/IBDU (labelled as UC), to assess nutrition behaviour of patients and its association with the other PROs.


We conducted a cross-sectional study among patients enrolled in the Swiss IBD cohort. We collected patient self-reported signs and symptoms, as used in the CDAI and MTWAI activity indexes. In addition, we collected information on needs, reasons, and frequency of diet adaptations. Descriptive statistics included numbers and percentages. Generalised ordered logit regression was used to assess associations between nutrition behaviour and PROs.


In total, 1215 patients answered to the questionnaire (54% females, 54% CD, mean age 49 years). The following signs and symptoms were reported: mild-to-severe abdominal pain: 45% (CD: 49%/UC: 41%, p = 0.008), faecal incontinence: 17% (CD: 19%/UC: 14%, p = 0.017), blood in stools: 22% (CD: 20%/UC: 25%, p = 0.045) and nocturnal diarrhoea: 16% (for both). Patients reported a mean of seven liquid or very soft stools in the last week (range CD: 0–112/UC: 0–89). Diet restrictions in the last week was reported by 41% of the patients (CD: 46%/UC: 36%, p = 0.004). One third of CD patients reported restrictions on a quarter (UC: 27%) and 14% on half-all foods (UC: 10%). Reasons for restrictions were: diarrhoea control (CD: 27%/UC: 21%, p = 0.007), poor digestion (CD: 43%/UC: 31%, p < 0.001), pain control (CD: 17%/UC: 9%, p < 0.001), limitations after resection surgery (CD: 5%/UC: 1%, p < 0.001), weight control (CD: 20%/UC: 16%, NS), prevention of relapses (CD and UC: 16%), prevention of diarrhoea (CD: 11%/UC: 8%, NS) and prevention of bloating/vomiting (CD: 25%/UC: 19%, p = 0.013). A third of all patients reported mild frustration about the need to adapt their diet while 11% were moderately to extremely frustrated. One third of patients adapted their diet when meals were taken out of home (8% did it more than half of the time), and one third had to adapt their meals in terms of time or quantity. Diet restriction significantly increased with nocturnal diarrhoea (CD), number of liquid/soft stools (UC) and abdominal pain (both), and decreased with higher general well-being (both).


We observed a high prevalence of the PROs used in CDAI and MTWAI clinical activity indexes in our patients. Diet adaptation was frequent and highly associated with several self-reported symptoms. It may potentially bias the levels of reported PROs, used to calculate activity scores. Therefore, it should be collected as an additional PRO.