Inflamm Bowel Dis. 2021 Jun 15;27(7):1096-1106. doi: 10.1093/ibd/izaa257.

David T Rubin ¹, Ailsa Hart ², Remo Panaccione ³, Alessandro Armuzzi ⁴, Ulla Suvanto ⁵, J Jasper Deuring ⁶, John Woolcott ⁷, Joseph C Cappelleri ⁸, Kathy Steinberg ⁹, Laura Wingate ¹⁰, Stefan Schreiber ¹¹

Author information

• ¹University of Chicago Medicine, Inflammatory Bowel Disease Center, Chicago, Illinois, USA.
• ²IBD Unit, St. Mark's Hospital, London, UK.
• ³Division of Gastroenterology and Hepatology, Department of Medicine, University of Calgary, Calgary, Alberta, Canada.
• ⁴IBD Unit, Fondazione Policlinico Universitario A. Gemelli IRCCS-Università Cattolica del Sacro Cuore, Rome, Italy.
• ⁵Crohn and Colitis Association of Finland, Tampere, Finland.
• ⁶Pfizer Inc, Rotterdam, The Netherlands.
• ⁷Pfizer Inc, Collegeville, Pennsylvania, USA.
• ⁸Pfizer Inc, Groton, Connecticut, USA.
• ⁹The Harris Poll, New York, New York, USA.
• ¹⁰Crohn's & Colitis Foundation, New York, New York, USA.
• ¹¹Department of Internal Medicine, University Hospital Schleswig-Holstein, Kiel, Germany.

Abstract

Background: The Ulcerative Colitis (UC) Narrative global surveys examined patient and physician perspectives on living with UC and tried to identify gaps in optimal care. Questions explored patient-physician interactions, UC management goals, and resources for improving communication.

Methods: Questionnaires were conducted across 10 countries, covering aspects of UC including diagnosis, treatment, and impact on patient quality of life, in addition to standard demographic information. Descriptive statistics were calculated.

Results: Globally, 2100 patients and 1254 physicians were surveyed (from August 2017 to February 2018). Results showed 85% of patients were satisfied with the communication they had with their physician, including discussions relating to symptoms (86%) and medication options (81%). However, 72% of patients wished for more information and support at initial diagnosis, and 48% did not feel comfortable talking to their physician about emotional concerns. Most patients (71%) set UC management goals with their physician. Both patients (63%) and physicians (79%) wished for longer appointments. Although 84% of physicians believed patient advocacy organizations to be important in UC management, more than half (54%) never discussed them with patients.

Conclusions: These survey results highlight overall patient satisfaction with patient-physician communication but emphasize areas for improvement, such as patient desire to have more information earlier in their disease course. There is an unmet need for better information, materials, and support. Physicians need to consider which of the available tools and resources can help patients talk more openly, and accurately, because informed patients are more likely to engage with physicians in a shared decision-making process.