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      Communication Between Physicians and Patients with Ulcerative Colitis: Reflections and Insights from a Qualitative Study of In-Office Patient–Physician Visits

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          Abstract

          Published online 9 March 2017

          Abstract

          Background:

          We analyzed in-office communication between patients with ulcerative colitis (UC) and their gastroenterologists.

          Methods:

          Participating gastroenterologists (United States N = 15; Europe N = 8) identified eligible patients with scheduled clinic visits. Patients (United States N = 40; Europe N = 28; ≥18 yr old; physician-defined moderately-to-severely active ulcerative colitis for approximately ≥1 yr; ≥1 flare in preceding year; prior or current therapy with 5-aminosalicylates and/or corticosteroids) consented to have their visit recorded. Follow-up interviews were conducted separately with gastroenterologists and patients. Transcripts were analyzed using sociolinguistic methods to explore quality of life (QoL) impacts, treatment goals, and attitudes to therapies.

          Results:

          In the European and U.S. research, the trend was for patients not to discuss ulcerative colitis QoL impacts during their visits. In the U.S. research, complete patient–physician alignment on QoL impacts (patient and physician stating the same impacts) was seen in 40% of cases. Variation in treatment goals was seen between gastroenterologists and patients: 3% of U.S. patients described absence of inflammation as a treatment goal versus 25% of gastroenterologists. This goal was not always conveyed to the patient during visits. Consistent with guidelines, physicians generally framed biologic therapy as suitable for patients refractory to conventional therapies. However, although putative efficacy offered by biologic therapy is generally aligned with patients' stated treatment goals, many considered biologic therapy as more appropriate for more severe disease than theirs.

          Conclusions:

          Alignment between patients and physicians on ulcerative colitis QoL impact, treatment goals, and requirement of advanced therapies is poor. New tools are needed to cover this gap.

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          Most cited references15

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          • Abstract: found
          • Article: not found

          Ulcerative colitis practice guidelines in adults: American College Of Gastroenterology, Practice Parameters Committee.

          Guidelines for clinical practice are aimed to indicate preferred approaches to medical problems as established by scientifically valid research. Double-blind placebo controlled studies are preferable, but compassionate-use reports and expert review articles are used in a thorough review of the literature conducted through Medline with the National Library of Medicine. When only data that will not withstand objective scrutiny are available, a recommendation is identified as a consensus of experts. Guidelines are applicable to all physicians who address the subject regardless of specialty training or interests and are aimed to indicate the preferable but not necessarily the only acceptable approach to a specific problem. Guidelines are intended to be flexible and must be distinguished from standards of care, which are inflexible and rarely violated. Given the wide range of specifics in any health-care problem, the physician must always choose the course best suited to the individual patient and the variables in existence at the moment of decision. Guidelines are developed under the auspices of the American College of Gastroenterology and its Practice Parameters Committee and approved by the board of trustees. Each has been intensely reviewed and revised by the Committee, other experts in the field, physicians who will use them, and specialists in the science of decision analysis. The recommendations of each guideline are therefore considered valid at the time of composition based on the data available. New developments in medical research and practice pertinent to each guideline will be reviewed at a time established and indicated at publication to assure continued validity. The recommendations made are based on the level of evidence found. Grade A recommendations imply that there is consistent level 1 evidence (randomized controlled trials), grade B indicates that the evidence would be level 2 or 3, which are cohort studies or case-control studies. Grade C recommendations are based on level 4 studies, meaning case series or poor-quality cohort studies, and grade D recommendations are based on level 5 evidence, meaning expert opinion.
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            Epidemiology, demographic characteristics and prognostic predictors of ulcerative colitis.

            Ulcerative colitis (UC) is a chronic disease characterized by diffuse inflammation of the mucosa of the colon and rectum. The hallmark clinical symptom of UC is bloody diarrhea. The clinical course is marked by exacerbations and remissions, which may occur spontaneously or in response to treatment changes or intercurrent illnesses. UC is most commonly diagnosed in late adolescence or early adulthood, but it can occur at any age. The incidence of UC has increased worldwide over recent decades, especially in developing nations. In contrast, during this period, therapeutic advances have improved the life expectancy of patients, and there has been a decrease in the mortality rate over time. It is important to emphasize that there is considerable variability in the phenotypic presentation of UC. Within this context, certain clinical and demographic characteristics are useful in identifying patients who tend to have more severe evolution of the disease and a poor prognosis. In this group of patients, better clinical surveillance and more intensive therapy may change the natural course of the disease. The aim of this article was to review the epidemiology and demographic characteristics of UC and the factors that may be associated with its clinical prognosis.
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              JAK inhibition using tofacitinib for inflammatory bowel disease treatment: a hub for multiple inflammatory cytokines.

              The inflammatory diseases ulcerative colitis and Crohn's disease constitute the two main forms of inflammatory bowel disease (IBD). They are characterized by chronic, relapsing inflammation of the gastrointestinal tract, significantly impacting on patient quality of life and often requiring prolonged treatment. Existing therapies for IBD are not effective for all patients, and an unmet need exists for additional therapies to induce and maintain remission. Here we describe the mechanism of action of the Janus kinase (JAK) inhibitor, tofacitinib, for the treatment of IBD and the effect of JAK inhibition on the chronic cycle of inflammation that is characteristic of the disease. The pathogenesis of IBD involves a dysfunctional response from the innate and adaptive immune system, resulting in overexpression of multiple inflammatory cytokines, many of which signal through JAKs. Thus JAK inhibition allows multiple cytokine signaling pathways to be targeted and is expected to modulate the innate and adaptive immune response in IBD, thereby interrupting the cycle of inflammation. Tofacitinib is an oral, small molecule JAK inhibitor that is being investigated as a targeted immunomodulator for IBD. Clinical development of tofacitinib and other JAK inhibitors is ongoing, with the aspiration of providing new treatment options for IBD that have the potential to deliver prolonged efficacy and clinically meaningful patient benefits.
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                Author and article information

                Journal
                Inflamm Bowel Dis
                Inflamm. Bowel Dis
                ibd
                Inflammatory Bowel Diseases
                Lippincott Williams & Wilkins
                1078-0998
                1536-4844
                9 March 2017
                April 2017
                : 23
                : 4
                : 494-501
                Affiliations
                [* ]Department of Medicine, Inflammatory Bowel Disease Center, The University of Chicago Medicine, Chicago, Illinois;
                []Susan and Leonard Feinstein Clinical IBD Center, Icahn School of Medicine at Mount Sinai, New York, New York;
                []M Health, Philadelphia, Pennsylvania;
                [§ ]Ogilvy CommonHealth Behavioral Insights, Parsippany, New Jersey; and
                []IDIBAPS, Hospital Clinic de Barcelona, CIBERehd, Barcelona, Spain.
                Author notes
                Address correspondence to: David T. Rubin, MD, Department of Medicine, University of Chicago Medicine, 5841 S. Maryland Avenue, MC 4076, Chicago, IL 60637 (e-mail: drubin@ 123456medicine.bsd.uchicago.edu ).
                Article
                IBD-D-16-00144 00002
                10.1097/MIB.0000000000001048
                5495553
                28296817
                204ec0e7-9e08-4c8c-a240-3ead6535a295
                Copyright © 2017 Crohn's & Colitis Foundation of America, Inc.
                History
                : 28 October 2016
                : 17 January 2017
                Categories
                IBD Live

                Gastroenterology & Hepatology
                ulcerative colitis,biologic therapies,psychosocial aspects of ibd,quality of life in ibd

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