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

2018; Elsevier BV; Volume: 17; Issue: 10 Linguagem: Inglês

10.1016/j.cgh.2018.11.029

1542-7714

Valérie Pittet, Michel H. Maillard, Thomas Simonson, Nicolas Fournier, Gerhard Rogler, Pierre Michetti, Claudia Anderegg, Peter Bauerfeind, Christoph Beglinger, Stefan Begré, Dominique C. Belli, José M. Bengoa, Luc Biedermann, Beat Bigler, Janek Binek, Mirjam Blattmann, Stephan Boehm, Jan Borovicka, Christian Braegger, Nora Brunner, Patrick Bühr, Bernard Burnand, Emanuel Burri, Sophie Buyse, Matthias Cremer, Dominique Criblez, Philippe de Saussure, Lukas Degen, Joakim Delarive, Christopher Doerig, Barbara Dora, Gian Dorta, Mara Egger, Tobias Ehmann, Ali El-Wafa, Matthias Engelmann, Jessica Ezri, Christian Felley, Markus Fliegner, Nicolas Fournier, Montserrat Fraga, Pascal Frei, Remus Frei, Michael Fried, Florian Froehlich, Christian Funk, Raoul I. Furlano, Suzanne Gallot-Lavallée, Martin Geyer, Marc Girardin, Delphine Golay, Tanja Grandinetti, Beat Gysi, Horst Haack, Johannes Haarer, Beat Helbling, Peter Hengstler, Denise Herzog, Cyrill Hess, Klaas Heyland, Thomas Hinterleitner, Philippe Hiroz, Claudia Hirschi, Petr Hrúz, Rika Iwata, Res Jost, Pascal Juillerat, Céline Keller, Christina Knellwolf, Christoph Knoblauch, Henrik Köhler, Rebekka Koller, Claudia Krieger‐Grübel, Gerd A. Kullak‐Ublick, Patrizia Künzler‐Heule, Markus A. Landolt, Rupprecht Lange, Frank Serge Lehmann, Andrew J. Macpherson, Philippe Maerten, Michel H. Maillard, Christine N. Manser, Markus G. Manz, Urs Marbet, George Marx, Christoph Matter, Rémy Meier, Martina Mendanova, Pierre Michetti, Benjamin Misselwitz, Bernhard Morell, Patrick Mosler, Christian Mottet, Christoph Müller, Pascal Müller, Beat Müllhaupt, Claudia Münger-Beyeler, Leilla Musso, Andreas Nagy, Michaela Neagu, Cristina Nichita, Jan Hendrik Niess, Andreas Nydegger, Nicole Obialo, Carl Oneta, Cassandra Oropesa, Ueli Peter, Daniel Peternac, Laetitia Marie Petit, Franziska Piccoli–Gfeller, Julia Beatrice Pilz, Valérie Pittet, Nadia Raschle, Ronald Rentsch, Sophie Restellini, Jean-Pierre Richterich, Sylvia Rihs, Marc Alain Ritz, Jocelyn Roduit, Daniela Rogler, Gerhard Rogler, Jean‐Benoît Rossel, Vanessa Rueger, Gaby Saner, Bernhard Sauter, Mikael Sawatzki, Michela Schäppi, Michael Scharl, Sylvie Scharl, Martin Schelling, Susanne Schibli, Hugo Schlauri, Sybille Schmid Uebelhart, Jean-François Schnegg, Alain Schoepfer, Frank Seibold, Mariam Seirafi, Gian-Marco Semadeni, David Semela, Arne Senning, Marc Sidler, Christiane Sokollik, Johannes Spalinger, Holger Spangenberger, Philippe Stadler, Michael Steuerwald, Alex Straumann, Bigna Straumann-Funk, Michael Christian Sulz, Alexandra Suter, Joël Thorens, Sarah Tiedemann, Radu Țuțuian, Stephan R. Vavricka, Francesco Viani, Jürg Vögtlin, Roland von Känel, Alain Vonlaufen, Dominique Vouillamoz, Rachel Vulliamy, Jürg Wermuth, Helene Werner, Paul Wiesel, Reiner Wiest, Tina Wylie, Jonas Zeitz, Dorothee Zimmermann,

Eosinophilic Esophagitis

Inflammatory bowel disease (IBD) scoring systems combine patient-reported data with physicians' 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).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 (κ) statistics to assess the level of agreement in scores between patients and health care professionals (Δt between reports collected less than 2 months apart). We used Spearman correlation coefficients (ρ) 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.The best level of agreement (although moderate) was observed for number of stools last week in patients with CD (κ = 0.47), and nocturnal diarrhea in patients with UC (κ = 0.52). Agreement was low on level of abdominal pain (κ = 0.31 for patients with CD and κ = 0.37 for patients with UC) and GWB (κ = 0.23 for patients with CD and κ = 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 (ρ = 0.68 for patients with CD and ρ = 0.70 for patients with UC) and SF-36 physical scores (ρ = 0.55 for patients with CD and ρ = 0.60 for patients with UC); there was no correlation between health care professional-rated GWB and QoL.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.