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      Prevalence and Duration of Gastrointestinal Symptoms Before Diagnosis of Inflammatory Bowel Disease and Predictors of Timely Specialist Review: A Population-Based Study

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          Abstract

          Background and Aims

          Lack of timely referral and significant waits for specialist review amongst individuals with unresolved gastrointestinal [GI] symptoms can result in delayed diagnosis of inflammatory bowel disease [IBD].

          Aims

          To determine the frequency and duration of GI symptoms and predictors of timely specialist review before the diagnosis of both Crohn’s disease [CD] and ulcerative colitis [UC].

          Methods

          This is a case control study of IBD matched 1:4 for age and sex to controls without IBD using the Clinical Practice Research Datalink from 1998 to 2016.

          Results

          We identified 19 555 cases of IBD and 78 114 controls. One in four cases of IBD reported GI symptoms to their primary care physician more than 6 months before receiving a diagnosis. There was a significant excess prevalence of GI symptoms in each of the 10 years before IBD diagnosis. GI symptoms were reported by 9.6% and 10.4% at 5 years before CD and UC diagnosis respectively compared to 5.8% of controls. Amongst patients later diagnosed with IBD, <50% received specialist review within 18 months from presenting with chronic GI symptoms. Patients with a previous diagnosis of irritable bowel syndrome [IBS] or depression were less likely to receive timely specialist review (IBS: hazard ratio [HR] = 0.77, 95% confidence interval [CI] 0.60–0.99, depression: HR = 0.77, 95% CI 0.60–0.98).

          Conclusions

          There is an excess of GI symptoms 5 years before diagnosis of IBD compared to the background population, probably attributable to undiagnosed disease. Previous diagnoses of IBS and depression are associated with delays in specialist review. Enhanced pathways are needed to accelerate specialist referral and timely IBD diagnosis.

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          Most cited references46

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          Is Open Access

          Data Resource Profile: Clinical Practice Research Datalink (CPRD)

          The Clinical Practice Research Datalink (CPRD) is an ongoing primary care database of anonymised medical records from general practitioners, with coverage of over 11.3 million patients from 674 practices in the UK. With 4.4 million active (alive, currently registered) patients meeting quality criteria, approximately 6.9% of the UK population are included and patients are broadly representative of the UK general population in terms of age, sex and ethnicity. General practitioners are the gatekeepers of primary care and specialist referrals in the UK. The CPRD primary care database is therefore a rich source of health data for research, including data on demographics, symptoms, tests, diagnoses, therapies, health-related behaviours and referrals to secondary care. For over half of patients, linkage with datasets from secondary care, disease-specific cohorts and mortality records enhance the range of data available for research. The CPRD is very widely used internationally for epidemiological research and has been used to produce over 1000 research studies, published in peer-reviewed journals across a broad range of health outcomes. However, researchers must be aware of the complexity of routinely collected electronic health records, including ways to manage variable completeness, misclassification and development of disease definitions for research.
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            British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults

            Ulcerative colitis and Crohn’s disease are the principal forms of inflammatory bowel disease. Both represent chronic inflammation of the gastrointestinal tract, which displays heterogeneity in inflammatory and symptomatic burden between patients and within individuals over time. Optimal management relies on understanding and tailoring evidence-based interventions by clinicians in partnership with patients. This guideline for management of inflammatory bowel disease in adults over 16 years of age was developed by Stakeholders representing UK physicians (British Society of Gastroenterology), surgeons (Association of Coloproctology of Great Britain and Ireland), specialist nurses (Royal College of Nursing), paediatricians (British Society of Paediatric Gastroenterology, Hepatology and Nutrition), dietitians (British Dietetic Association), radiologists (British Society of Gastrointestinal and Abdominal Radiology), general practitioners (Primary Care Society for Gastroenterology) and patients (Crohn’s and Colitis UK). A systematic review of 88 247 publications and a Delphi consensus process involving 81 multidisciplinary clinicians and patients was undertaken to develop 168 evidence- and expert opinion-based recommendations for pharmacological, non-pharmacological and surgical interventions, as well as optimal service delivery in the management of both ulcerative colitis and Crohn’s disease. Comprehensive up-to-date guidance is provided regarding indications for, initiation and monitoring of immunosuppressive therapies, nutrition interventions, pre-, peri- and postoperative management, as well as structure and function of the multidisciplinary team and integration between primary and secondary care. Twenty research priorities to inform future clinical management are presented, alongside objective measurement of priority importance, determined by 2379 electronic survey responses from individuals living with ulcerative colitis and Crohn’s disease, including patients, their families and friends.
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              3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn's Disease 2016: Part 1: Diagnosis and Medical Management.

              This paper is the first in a series of two publications relating to the European Crohn's and Colitis Organisation [ECCO] evidence-based consensus on the diagnosis and management of Crohn's disease and concerns the methodology of the consensus process, and the classification, diagnosis and medical management of active and quiescent Crohn's disease. Surgical management as well as special situations including management of perianal Crohn's disease of this ECCO Consensus are covered in a subsequent second paper [Gionchetti et al JCC 2016].
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                Author and article information

                Contributors
                Journal
                Journal of Crohn's and Colitis
                Oxford University Press (OUP)
                1873-9946
                1876-4479
                February 01 2021
                February 01 2021
                July 15 2020
                February 01 2021
                February 01 2021
                July 15 2020
                : 15
                : 2
                : 203-211
                Affiliations
                [1 ]Department of Gastroenterology, St George’s Healthcare NHS Trust, St George’s University, London, UK
                [2 ]School of Public Health, Imperial College London, London, UK
                [3 ]Department of Primary Care and Population Health, University College London, London, UK
                [4 ]Department of Clinical Epidemiology, Aarhus University, Denmark
                [5 ]Institute of Psychiatry, Kings College London, London, UK
                [6 ]South London and Maudsley NHS Foundation Trust, London, UK
                Article
                10.1093/ecco-jcc/jjaa146
                32667962
                bb120673-897d-4c28-8ba4-4864fb1d1502
                © 2020
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