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      Planning to conceive within a year is associated with better pregnancy-specific disease-related patient knowledge and better medication adherence in women of childbearing age with inflammatory bowel disease

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          Abstract

          Background:

          Adherence to inflammatory bowel disease (IBD) medication is crucial to maintain remission, especially during pregnancy.

          Objective:

          To examine the influence of family planning and pregnancy-related patient knowledge regarding IBD and pregnancy on adherence.

          Design:

          Cross-sectional survey study

          Methods:

          We surveyed female patients with IBD aged 18–35 years, who at recruitment to the UK IBD BioResource had not had children. We elicited disease and treatment history, demographics and family planning status via an online questionnaire. Patient knowledge as assessed by the validated Crohn’s and Colitis Pregnancy Knowledge Score (CCPKnow) and adherence by visual analogue scale (VAS).

          Results:

          In 326 responders (13.8% response rate), good adherence (VAS ⩾ 80) was found in only 38.35%. Disease- and treatment-related factors were not significantly associated with good adherence, except for methotrexate (70.0% adherent of 10 exposed patients versus 37.2% non-exposed; p = 0.036). Patients planning pregnancy for the next year were more often adherent (59.0% versus 35.5%; p = 0.019) and knowledgeable (median CCPKnow 8 versus 7; p = 0.035) compared to those in other family planning categories. Pregnancy-related patient knowledge was significantly associated with adherence (Pearson correlation 0.141; p = 0.015). Adherent patients had significantly higher CCPKnow scores than non-adherent patients (median 8 versus 6; p = 0.009). On binary regression analysis, only planning to conceive within 12 months was independently associated with better adherence ( p = 0.016), but not methotrexate exposure ( p = 0.076) and CCPKnow ( p = 0.056).

          Conclusions:

          In a cohort of women of childbearing age with IBD overall medication, adherence was low. Planning to conceive within the next year was associated with better adherence and greater patient knowledge.

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          Most cited references32

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          Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

          Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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            The REDCap consortium: Building an international community of software platform partners

            The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.
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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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                Author and article information

                Contributors
                Role: ConceptualizationRole: Formal analysisRole: InvestigationRole: MethodologyRole: Writing – original draft
                Role: Data curationRole: Formal analysisRole: MethodologyRole: Writing – review & editing
                Role: InvestigationRole: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Writing – review & editing
                Role: ConceptualizationRole: InvestigationRole: MethodologyRole: Writing – review & editing
                Journal
                Therap Adv Gastroenterol
                Therap Adv Gastroenterol
                TAG
                sptag
                Therapeutic Advances in Gastroenterology
                SAGE Publications (Sage UK: London, England )
                1756-283X
                1756-2848
                30 August 2023
                2023
                : 16
                : 17562848231193211
                Affiliations
                [1-17562848231193211]Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, St James University Hospital, Bexley Wing, Leeds, LS9 7TF, UK
                [2-17562848231193211]Leeds Institute of Medical Research at St James’s, University of Leeds, Leeds, UK
                [3-17562848231193211]Faculty of Medicine and Health Sciences, Macquarie University, Sydney, NSW, Australia
                [4-17562848231193211]Department of Gastroenterology, Macquarie University Hospital, Sydney, NSW, Australia
                [5-17562848231193211]Department of Gastroenterology, Royal Wolverhampton Hospital, Wolverhampton, UK
                [6-17562848231193211]Faculty of Science and Engineering, University of Wolverhampton, Wolverhampton, UK
                [7-17562848231193211]Department of Gastroenterology, Royal Wolverhampton Hospital, Wolverhampton, UK
                [8-17562848231193211]Faculty of Science and Engineering, University of Wolverhampton, Wolverhampton, UK
                [9-17562848231193211]Cambridge University Hospitals, Cambridge Biomedical Campus, Cambridge, UK
                [10-17562848231193211]Department of Gastroenterology and Hepatology, Concord Repatriation General Hospital, Sydney, NSW, Australia
                [11-17562848231193211]Concord Clinical School, University of Sydney, Sydney, NSW, Australia
                Author notes
                Author information
                https://orcid.org/0000-0003-2022-5859
                https://orcid.org/0000-0001-7997-5983
                https://orcid.org/0000-0001-5944-3488
                Article
                10.1177_17562848231193211
                10.1177/17562848231193211
                10475232
                37667806
                5188a323-aea6-490f-afd3-ee9558eb47c3
                © The Author(s), 2023

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 14 June 2023
                : 21 July 2023
                Categories
                Original Research
                Custom metadata
                January-December 2023
                ts1

                inflammatory bowel disease,medication adherence,patient knowledge,pregnancy

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