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P298 Comparison between clinical and patient-reported symptoms among Crohn's disease and ulcerative colitis patients

Pittet V.*1, Maillard M.H.2, Rogler G.3, Michetti P.4

1Institute of Social & Preventive Medicine, Healthcare Evaluation Unit, Lausanne, Switzerland 2Lausanne University Hospital, Department of Gastroenterology & Hepatology, Lausanne, Switzerland 3University of Zurich, Gastroenterology and Hepatology, Zurich, Switzerland 4Clinique La Source-Beaulieu, Crohn and Colitis Center, Lausanne, Switzerland


There is no symptom-based patient-reported outcomes (PRO) measurement available in IBD. Disease scores contain a mixture of PRO and physician's observations and have shown serious limitations in clinical trials. Comparison between healthcare professionals (HCP) and patient (P) reports on scores' items is a first step toward disease scores refinement. In our IBD cohort study, we were able to collect P and HCP-reported symptoms independently. We assessed the agreement between both measures, and tested the correlation between the general well-being item (GWB) and two health-related quality of life (HRQoL) measures.


Between 2012 and 2015, we collected CDAI and MTWAI items 1) during follow-up medical visits, 2) through P self-reported follow-up questionnaire, except lab values. We compared items independently reported by HCP and P, stratified by diagnostic and Δt HCP-P reports. We calculated the Cohen's kappa (κ) statistic for agreement. A quadratic weight was applied for more severely serious disagreements. For EIM & complications, we computed a pooled κ based on the average between observed and expected probability of agreement over sub-items. A pooled κ was computed to summarize agreement over all examined variables. We also collected SF-36 and IBDQ scores. Pearson correlation coefficients r were calculated between both scores and GWB reports of HCP and P.


2427 reports could be evaluated (Δt: 537<1 month, 390 1–2, 1500 2–6), referring to 1385 patients (52% females, 58% CD).

Table 1. Cohen's Kappa scores for GI-P agreement among activity index items (0–0.2: very low, 0.2–0.4: low, 0.4–0.6: moderate, 0.6–0.8: high, 0.8–1: perfect).

The best overall κ was found at Δt 1–2 months, moderate for number of stools/wk and antidiarrheal treatment (AT) in CD, moderate to good for nocturnal diarrhea and bloody stools in UC. Agreement on GWB was low to very low. P-reported GWB were well correlated with IBDQ (CD: r=0.65, UC: r=0.67), SF-36 physical (PCS) (CD: r=0.52, UC: r=0.58) an SF-36 mental (MCS) component scores (CD: r=0.47, UC: r=0.46). Correlation of PCS resp. IBQD with HCP-reported CD-GBW was moderate at Δt <1 and 2–3 months (r=−0.45 and −0.53, resp. −0.43 and −0.48), but correlation with MCS remained low (r<0.40) whatever Δt. For UC, HCP-reported GBW moderately correlated with IBDQ at Δt<1 and 1–2 months (r=−0.48 and −0.47), but was low when Δt >2. Correlation with PCS and MCS remained low whatever Δt.


The agreement was low for many scores' items, except two per disease. Among scores' items with high weight, eg CDAI AT or GWB, agreement was surprisingly low. P-GWB correlated with HRQoL scores better than HCP, especially for scores related to mental or emotional aspects.