Differences in Outcomes Reported by Patients With Inflammatory Bowel Diseases vs Their Health Care Professionals

BACKGROUND & AIMS: Inflammatory bowel disease (IBD) scoring systems combine patient-reported data with physi- cians' observations to determine patient outcomes, but these systems are believed to have limitations. We used real-world data from a large IBD cohort in Switzerland to compare results between patients and healthcare professionals from scoring systems for Crohn's disease (CD) and ulcerative colitis (UC). METHODS: We collected data from the Swiss IBD cohort, beginning in 2006, using 2453 reports for 1385 patients (52% female, 58% with CD). During office visits, physicians asked patients about signs and symptoms and recorded their answers (health care professional-reported outcomes). On a later date, patients received a questionnaire at home (independently of the medical visit), complete it, and sent it back to the data center. Patients also completed the short form 36 and IBD quality of life (QoL) questionnaires. We calculated Cohen's kappa (kappa) statistics to assess the level of agreement in scores between patients and health care professionals (Delta t between reports collected less than 2 months apart). We used Spearman correlation coefficients (rho) to compare general well-being (GWB) and QoL scores determined by patients vs health care professionals. Our primary aim was to investigate the overall and individual level of agreement on signs and symptoms reported by health care professionals vs patients. RESULTS: The best level of agreement (although moderate) was observed for number of stools last week in patients with CD (kappa = 0.47), and nocturnal diarrhea in patients with UC (kappa = 0.52). Agreement was low on level of abdominal pain (kappa = 0.31 for patients with CD and kappa = 0.37 for patients with UC) and GWB (kappa = 0.23 for patients with CD and kappa = 0.26 for patients with UC). Patients reported less severe abdominal pain and worse GWB (CD) or better GWB (UC) than that determined by health care professionals. Patient self-rated GWB correlated with IBD quality of life (rho = 0.68 for patients with CD and rho = 0.70 for patients with UC) and SF-36 physical scores (rho = 0.55 for patients with CD and rho = 0.60 for patients with UC); there was no correlation between health care professional-rated GWB and QoL. CONCLUSIONS: In a comparison of patient vs health care provider-reported outcomes in a Swiss IBD cohort, we found that health care professionals seem to misinterpret patients' complaints. Patients self-rated GWB correlated with QoL scores, indicating that reporting GWB in a single question is possible and relevant, but can vary based on how the data are collected.