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      Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians

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          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.

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          Most cited references36

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          Ulcerative colitis

          Ulcerative colitis is a chronic inflammatory disease affecting the colon, and its incidence is rising worldwide. The pathogenesis is multifactorial, involving genetic predisposition, epithelial barrier defects, dysregulated immune responses, and environmental factors. Patients with ulcerative colitis have mucosal inflammation starting in the rectum that can extend continuously to proximal segments of the colon. Ulcerative colitis usually presents with bloody diarrhoea and is diagnosed by colonoscopy and histological findings. The aim of management is to induce and then maintain remission, defined as resolution of symptoms and endoscopic healing. Treatments for ulcerative colitis include 5-aminosalicylic acid drugs, steroids, and immunosuppressants. Some patients can require colectomy for medically refractory disease or to treat colonic neoplasia. The therapeutic armamentarium for ulcerative colitis is expanding, and the number of drugs with new targets will rapidly increase in coming years.
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            Ulcerative colitis.

            Ulcerative colitis is an idiopathic, chronic inflammatory disorder of the colonic mucosa, which starts in the rectum and generally extends proximally in a continuous manner through part of, or the entire, colon; however, some patients with proctitis or left-sided colitis might have a caecal patch of inflammation. Bloody diarrhoea is the characteristic symptom of the disease. The clinical course is unpredictable, marked by alternating periods of exacerbation and remission. In this Seminar we discuss the epidemiology, pathophysiology, diagnostic approach, natural history, medical and surgical management, and main disease-related complications of ulcerative colitis, and briefly outline novel treatment options. Enhanced understanding of how the interaction between environmental factors, genetics, and the immune system results in mucosal inflammation has increased knowledge of disease pathophysiology. We provide practical therapeutic algorithms that are easily applicable in daily clinical practice, emphasising present controversies in treatment management and novel therapies. Copyright © 2012 Elsevier Ltd. All rights reserved.
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              Racial and Ethnic Disparities in the Quality of Health Care.

              The annual National Healthcare Quality and Disparities Reports document widespread and persistent racial and ethnic disparities. These disparities result from complex interactions between patient factors related to social disadvantage, clinicians, and organizational and health care system factors. Separate and unequal systems of health care between states, between health care systems, and between clinicians constrain the resources that are available to meet the needs of disadvantaged groups, contribute to unequal outcomes, and reinforce implicit bias. Recent data suggest slow progress in many areas but have documented a few notable successes in eliminating these disparities. To eliminate these disparities, continued progress will require a collective national will to ensure health care equity through expanded health insurance coverage, support for primary care, and public accountability based on progress toward defined, time-limited objectives using evidence-based, sufficiently resourced, multilevel quality improvement strategies that engage patients, clinicians, health care organizations, and communities.
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                Author and article information

                Journal
                Inflamm Bowel Dis
                Inflamm Bowel Dis
                ibd
                Inflammatory Bowel Diseases
                Oxford University Press (US )
                1078-0998
                1536-4844
                July 2021
                15 October 2020
                15 October 2020
                : 27
                : 7
                : 1096-1106
                Affiliations
                [1 ] University of Chicago Medicine, Inflammatory Bowel Disease Center , Chicago, Illinois, USA
                [2 ] IBD Unit, St. Mark’s Hospital , London, UK
                [3 ] Division of Gastroenterology and Hepatology, Department of Medicine, University of Calgary , Calgary, Alberta, Canada
                [4 ] IBD Unit, Fondazione Policlinico Universitario A. Gemelli IRCCS–Università Cattolica del Sacro Cuore , Rome, Italy
                [5 ] Crohn and Colitis Association of Finland , Tampere, Finland
                [6 ] Pfizer Inc , Rotterdam, The Netherlands
                [7 ] Pfizer Inc , Collegeville, Pennsylvania, USA
                [8 ] Pfizer Inc , Groton, Connecticut, USA
                [9 ] The Harris Poll , New York, New York, USA
                [10 ] Crohn’s & Colitis Foundation , New York, New York, USA
                [11 ] Department of Internal Medicine, University Hospital Schleswig-Holstein , Kiel, Germany
                Author notes
                Address correspondence to: Stefan Schreiber, MD, Department of Internal Medicine, University Hospital Schleswig-Holstein, Kiel, Germany ( s.schreiber@ 123456mucosa.de ); or Laura Wingate, BA, Crohn’s and Colitis Foundation, New York, NY ( lwingate@ 123456crohnscolitisfoundation.org ).
                Article
                izaa257
                10.1093/ibd/izaa257
                8214018
                33057598
                5b1cabc2-8c00-4144-8a91-9ef9446a60b6
                © 2020 Crohn’s & Colitis Foundation. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 08 June 2020
                : 01 September 2020
                Page count
                Pages: 11
                Funding
                Funded by: Pfizer Inc;
                Categories
                Clinical Research
                AcademicSubjects/MED00260
                Ibdjnl/6

                Gastroenterology & Hepatology
                inflammatory bowel disease,physician-patient relationships,quality of care,shared decision-making,survey

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