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      Patient-Reported Outcomes in Gastroenterology: Clinical and Research Applications

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          Abstract

          Patient-generated reports, also known as Patient-Reported Outcomes (PROs), capture the patients' illness experience in a structured format and may help bridge the gap between patients and providers. PROs measure any aspect of patient-reported health (e.g., physical, emotional or social symptoms) and can help to direct care and improve clinical outcomes. When clinicians systematically collect patient-reported data in the right place at the right time, PRO measurement can effectively aid in detection and management of conditions, improve satisfaction with care and enhance the patient-provider relationship. This review article summarizes the latest approaches to PRO measuring for clinical trials and clinical practice, with a focus on use of PROs in gastroenterology.

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          Most cited references117

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          A simple clinical colitis activity index.

          R S Walmsley, R C S Ayres, R E Pounder … (1998)
          The appropriate medical treatment of patients with ulcerative colitis is determined largely by the severity of symptoms. Hospital assessment of the severity of disease activity includes investigation of laboratory indices and sigmoidoscopic assessment of mucosal inflammation. To develop a simplified clinical colitis activity index to aid in the initial evaluation of exacerbations of colitis. The information for development of the simple index was initially evaluated in 63 assessments of disease activity in patients with ulcerative colitis where disease activity was evaluated using the Powell-Tuck Index (which includes symptoms, physical signs, and sigmoidoscopic appearance). The new index was then further evaluated in 113 assessments in a different group of patients, by comparison with a complex index utilising clinical and laboratory data, as well as five haematological and biochemical markers of disease severity. The newly devised Simple Clinical Colitis Activity Index, consisting of scores for five clinical criteria, showed a highly significant correlation with the Powell-Tuck Index (r = 0.959, p < 0.0001) as well as the complex index (r = 0.924, p < 0.0001) and all laboratory markers (p = 0.0003 to p < 0.0001). This new Simple Colitis Activity Index shows good correlation with existing more complex scoring systems and therefore could be useful in the initial assessment of patients with ulcerative colitis.
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            Organizing care for patients with chronic illness.

            E Wagner, B. Austin, M Von Korff (1996)
            Usual medical care often fails to meet the needs of chronically ill patients, even in managed, integrated delivery systems. The medical literature suggests strategies to improve outcomes in these patients. Effective interventions tend to fall into one of five areas: the use of evidence-based, planned care; reorganization of practice systems and provider roles; improved patient self-management support; increased access to expertise; and greater availability of clinical information. The challenge is to organize these components into an integrated system of chronic illness care. Whether this can be done most efficiently and effectively in primary care practice rather than requiring specialized systems of care remains unanswered.
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              The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature.

              J. M. Valderas, A. Kotzeva, M Espallargues … (2008)
              The purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice. Systematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field). Out of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care. Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined.
              Article 0 comments Cited 254 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): J Neurogastroenterol Motil
                Journal ID (iso-abbrev): J Neurogastroenterol Motil
                Journal ID (publisher-id): JNM
                Title: Journal of Neurogastroenterology and Motility
                Publisher: Korean Society of Neurogastroenterology and Motility
                ISSN (Print): 2093-0879
                ISSN (Electronic): 2093-0887
                Publication date (Print): April 2013
                Publication date (Electronic): 16 April 2013
                Volume: 19
                Issue: 2
                Pages: 137-148
                Affiliations
                Department of Gastroenterology, VA Greater Los Angeles Healthcare System; Division of Digestive Diseases, David Geffen School of Medicine at UCLA; Department of Health Services, UCLA School of Public Health; and UCLA/VA Center for Outcomes Research and Education, Los Angeles, California, USA.
                Author notes
                Correspondence: Brennan M R Spiegel, MD, MSHS. Associate Professor of Medicine, 11301 Wilshire Blvd, Bldg 115, Room 215, Los Angeles, California 90073, USA. Tel: +1-310-268-3256, Fax: +1-310-268-4510, bspiegel@ 123456mednet.ucla.edu
                Article
                DOI: 10.5056/jnm.2013.19.2.137
                PMC ID: 3644650
                PubMed ID: 23667745
                SO-VID: b9821308-5a00-48c8-aa12-4ea89a84165e
                Copyright © © 2013 The Korean Society of Neurogastroenterology and Motility
                License:

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 04 January 2013
                Date revision received : 25 February 2013
                Date accepted : 26 February 2013
                Categories
                Subject: Review

                ScienceOpen disciplines: Neurology
                Keywords: gastroenterology,patient-reported outcomes,quality of life
                Data availability:
                ScienceOpen disciplines: Neurology
                Keywords: gastroenterology, patient-reported outcomes, quality of life

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