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Brief Communication
IBD
Novel inflammatory bowel disease (IBD) specific electronic medical record allows scalable auditing of IBD severity, therapy and complications to show the current unmet need in IBD care
Alex Barnes, David Carter, Patricia Kaazan, Alissa Walsh, Susan Connor, Jane M Andrews
Intest Res 2022;20(4):506-508.   Published online April 26, 2022
DOI: https://doi.org/10.5217/ir.2022.00003
PDFPubReaderePub
  • 3,363 View
  • 371 Download
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Original Article
Inflammatory bowel diseases
Real-time data monitoring for ulcerative colitis: patient perception and qualitative analysis
Alissa Walsh, Lawrence Matini, Christopher Hinds, Vanashree Sexton, Oliver Brain, Satish Keshav, John Geddes, Guy Goodwin, Gary Collins, Simon Travis, Michele Peters
Intest Res 2019;17(3):365-374.   Published online May 31, 2019
DOI: https://doi.org/10.5217/ir.2018.00173
AbstractAbstract PDFPubReaderePub
Background/Aims
TrueColours ulcerative colitis (TCUC) is a comprehensive web-based program that functions through email, providing direct links to questionnaires. Several similar programs are available, however patient perspectives are unexplored.
Methods
A pilot study was conducted to determine feasibility, usability and patient perceptions of real-time data collection (daily symptoms, fortnightly quality of life, 3 monthly outcomes). TCUC was adapted from a web-based program for patients with relapsing-remitting bipolar disorder, using validated UC indices. A semi-structured interview was developed and audio-recorded face-to-face interviews were conducted after 6 months of interaction with TCUC. Transcripts were coded in NVivo11, a qualitative data analysis software package. An inductive approach and thematic analysis was conducted.
Results
TCUC was piloted in 66 patients for 6 months. Qualitative analysis currently defies statistical appraisal beyond “data saturation,” even if it has more influence on clinical practice than quantitative data. A total of 28 face-to-face interviews were conducted. Six core themes emerged: awareness, control, decision-making, reassurance, communication and burden of treatment. There was a transcending overarching theme of patient empowerment, which cut across all aspects of the TCUC experience.
Conclusions
Patient perception of the impact of real-time data collection was extremely positive. Patients felt empowered as a product of the self-monitoring format of TCUC, which may be a way of improving self-management of UC whilst also decreasing the burden on the individual and healthcare services.

Citations

Citations to this article as recorded by  
  • Investigating Patient Perspectives on Using eHealth Technologies for the Self-Management of Inflammatory Bowel Disease: Mixed Methods Study
    Sander Hermsen, Danielle Tump, Eva Wentink, Marjolijn Duijvestein
    Journal of Medical Internet Research.2024; 26: e53512.     CrossRef
  • The body as an obstacle and the “other”. How patients with chronic inflammatory bowel diseases view their body, self and the good life
    Anke Erdmann, Christoph Rehmann-Sutter, Florian Schrinner, Claudia Bozzaro
    BMC Medical Ethics.2024;[Epub]     CrossRef
  • Development of the Escalation of Therapy or Intervention (ETI) Calculator for Patients with Ulcerative Colitis Using ePROMs
    Lawrence Matini, Thomas P Chapman, Ramona Kantschuster, Jean Wilson, Adib Tarafdar, Moheez Hussain, Kaiyang Song, Daniel M Simadibrata, Pavetha Seeva, Lydia White, Jessica Slater, Andrey Kormilitzin, Gary Collins, Simon P L Travis, Alissa Walsh
    Journal of Crohn's and Colitis.2023; 17(11): 1744.     CrossRef
  • Deep learning model for distinguishing Mayo endoscopic subscore 0 and 1 in patients with ulcerative colitis
    Ji Eun Kim, Yoon Ho Choi, Yeong Chan Lee, Gyeol Seong, Joo Hye Song, Tae Jun Kim, Eun Ran Kim, Sung Noh Hong, Dong Kyung Chang, Young-Ho Kim, Soo-Yong Shin
    Scientific Reports.2023;[Epub]     CrossRef
  • Patient-reported Outcomes: the ICHOM Standard Set for Inflammatory Bowel Disease in Real-life Practice Helps Quantify Deficits in Current Care
    Darren Wong, Lawrence Matini, Andrey Kormilitzin, Ramona Kantschuster, Daniel Martin Simadibrata, Sara Lyden, Jean Wilson, Oliver A Brain, Rebecca Palmer, Tim Ambrose, Jack Satsangi, Matthew South, John Geddes, Keith Bodger, Simon P L Travis, Alissa Walsh
    Journal of Crohn's and Colitis.2022; 16(12): 1874.     CrossRef
  • Analysis of the Current Situation of Teaching and Learning of Ideological and Political Theory Courses by Deep Learning
    Jin Chao, Yijiang Zhang, Arpit Bhardwaj
    Computational Intelligence and Neuroscience.2022; 2022: 1.     CrossRef
  • Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians
    David T Rubin, Ailsa Hart, Remo Panaccione, Alessandro Armuzzi, Ulla Suvanto, J Jasper Deuring, John Woolcott, Joseph C Cappelleri, Kathy Steinberg, Laura Wingate, Stefan Schreiber
    Inflammatory Bowel Diseases.2021; 27(7): 1096.     CrossRef
  • Telehealth and mobile health interventions in adults with inflammatory bowel disease: A mixed‐methods systematic review
    Suja P. Davis, Megan Suzanne Hardin Ross, Reuben Adatorwovor, Holly Wei
    Research in Nursing & Health.2021; 44(1): 155.     CrossRef
  • COVID-19 and Gastrointestinal Disease: Implications for the Gastroenterologist
    Richard H. Hunt, James E. East, Angel Lanas, Peter Malfertheiner, Jack Satsangi, Carmelo Scarpignato, Gwilym J. Webb
    Digestive Diseases.2021; 39(2): 119.     CrossRef
  • The True Colours Remote Symptom Monitoring System: A Decade of Evolution
    Sarah M Goodday, Lauren Atkinson, Guy Goodwin, Kate Saunders, Matthew South, Clare Mackay, Mike Denis, Chris Hinds, Mary-Jane Attenburrow, Jim Davies, James Welch, William Stevens, Karen Mansfield, Juulia Suvilehto, John Geddes
    Journal of Medical Internet Research.2020; 22(1): e15188.     CrossRef
  • Developments and challenges of e-health strategies for people with inflammatory bowel disease
    Pearl Avery
    British Journal of Healthcare Management.2020; 26(3): 73.     CrossRef
  • Pathogenesis and clinical perspectives of extraintestinal manifestations in inflammatory bowel diseases
    Jung Min Kim, Jae Hee Cheon
    Intestinal Research.2020; 18(3): 249.     CrossRef
  • The UK IBD Registry COVID-19 Risk Tool; Patient Generated Data Can Improve the Hospital Record
    Nicholas A. Kennedy, Naila Arebi, Keith Bodger, Vida Cairnes, R. Fraser Cummings, Liz Dobson, Stephen Grainger, Paul Harrow, A. Barney Hawthorne, Gareth-Rhys Jones, Alexandra Kent, Shaji Sebastian, Christian Selinger, Gareth J. Walker, Lisa Younge, Stuart
    SSRN Electronic Journal .2020;[Epub]     CrossRef
  • 64,088 View
  • 139 Download
  • 13 Web of Science
  • 13 Crossref
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Review
IBD
What's app? Electronic health technology in inflammatory bowel disease
Alissa Walsh, Simon Travis
Intest Res 2018;16(3):366-373.   Published online July 27, 2018
DOI: https://doi.org/10.5217/ir.2018.16.3.366
AbstractAbstract PDFPubReaderePub

Electronic health (eHealth) data collection is increasingly used in many chronic illnesses, to track pattern of disease. eHealth systems have the potential to revolutionize care. Inflammatory bowel disease (IBD) is a paradigm for such an approach: this is a chronic disease that usually affects young and technologically literate patient population, who are motivated to be involved in their own care. A range of eHealth technologies are available for IBD. This review considers the strengths and weaknesses of 7 platforms that focus on patient-provider interaction. These have been developed in Denmark, United States, the Netherlands, and the United Kingdom, demonstrating an international interest in this form of technology and interaction. Not only do these technologies aim to improve care but they also have the potential to collect large amounts of information. Information includes demographics and patient reported outcomes (symptoms, quality of life), quality of care (steroid use, among other metrics) and outcomes such as hospitalization. These data could inform quality improvement programmes to improve their focus. eHealth technology is also open to machine learning to analyze large data sets, through which personalized algorithms may be developed.

Citations

Citations to this article as recorded by  
  • Validation of the IBD-Control Questionnaire across different sociodemographic and clinical subgroups: secondary analysis of a nationwide electronic survey
    Gerum G Gebeyehu, Frederick Taylor, Liz Dobson, J R Fraser Cummings, Stuart Bloom, Nicholas A Kennedy, Paul Christiansen, Keith Bodger
    Journal of Crohn's and Colitis.2024; 18(2): 275.     CrossRef
  • Investigating Patient Perspectives on Using eHealth Technologies for the Self-Management of Inflammatory Bowel Disease: Mixed Methods Study
    Sander Hermsen, Danielle Tump, Eva Wentink, Marjolijn Duijvestein
    Journal of Medical Internet Research.2024; 26: e53512.     CrossRef
  • How can pharmacists better support patients with chronic diseases? The patient perspective
    Lakesha Butler, Steven Zona, Aarti A. Patel, Christine Brittle, Lisa Shea
    Journal of the American Pharmacists Association.2023; 63(6): 1776.     CrossRef
  • Therapeutic drug monitoring of biologics in inflammatory bowel disease: unmet needs and future perspectives
    Konstantinos Papamichael, Waqqas Afif, David Drobne, Marla C Dubinsky, Marc Ferrante, Peter M Irving, Nikolaos Kamperidis, Taku Kobayashi, Paulo G Kotze, Jo Lambert, Nurulamin M Noor, Xavier Roblin, Giulia Roda, Niels Vande Casteele, Andres J Yarur, Naila
    The Lancet Gastroenterology & Hepatology.2022; 7(2): 171.     CrossRef
  • Telemedicine based on patient-reported outcomes in management of patients with inflammatory bowel disease in a real-life setting – a before and after cohort study
    Charlotte W. Appel, Sarah Christine Pedersen, Amalie Søgaard Nielsen, Birgit Furstrand Larsen
    Scandinavian Journal of Gastroenterology.2022; 57(7): 825.     CrossRef
  • Readiness, acceptance and use of digital patient reported outcome in an outpatient clinic
    Amalie Søgaard Nielsen, Lisa Hanna, Birgit Furstrand Larsen, Charlotte W Appel, Richard H Osborne, Lars Kayser
    Health Informatics Journal.2022;[Epub]     CrossRef
  • The International Association of Dental Traumatology ToothSOS mobile app: A 2‐year report
    Anahat Khehra, Nestor Cohenca, Zafer C. Cehreli, Liran Levin
    Dental Traumatology.2021; 37(1): 145.     CrossRef
  • Telehealth and mobile health interventions in adults with inflammatory bowel disease: A mixed‐methods systematic review
    Suja P. Davis, Megan Suzanne Hardin Ross, Reuben Adatorwovor, Holly Wei
    Research in Nursing & Health.2021; 44(1): 155.     CrossRef
  • Real-life pilot study on the impact of the telemedicine platform EasyMICI–MaMICI® on quality of life and quality of care in patients with inflammatory bowel disease
    Guillaume Bonnaud, Audrey Haennig, Romain Altwegg, Bénédicte Caron, Lucile Boivineau, Camille Zallot, Cyrielle Gilleta de Saint-Joseph, Jacques Moreau, Florent Gonzalez, Didier Reynaud, Patrick Faure, Philippe Aygalenq, Jean Marc Combis, Laurent Peyrin-Bi
    Scandinavian Journal of Gastroenterology.2021; 56(5): 530.     CrossRef
  • Patient Reported Outcomes in Chronic Inflammatory Diseases: Current State, Limitations and Perspectives
    Florian Tran, Jan Henrik Schirmer, Ilka Ratjen, Wolfgang Lieb, Philip Helliwell, Johan Burisch, Juliane Schulz, Florian Schrinner, Charlot Jaeckel, Ulf Müller-Ladner, Stefan Schreiber, Bimba F. Hoyer
    Frontiers in Immunology.2021;[Epub]     CrossRef
  • Researching Interventions to Improve Medication Adherence in Ulcerative Colitis Patients
    Mila Palma Pacheco, Flora Maria Lorenzo Fortes, Raquel Rocha dos Santos, Genoile Oliveira Santana Silva
    Journal of Coloproctology.2021; 41(01): 096.     CrossRef
  • Mobile app requirements for patients with rare liver diseases: A single center survey for the ERN RARE-LIVER‬‬‬
    Darius F. Rüther, Marcial Sebode, Ansgar W. Lohse, Sarah Wernicke, Erwin Böttinger, Christian Casar, Felix Braun, Christoph Schramm
    Clinics and Research in Hepatology and Gastroenterology.2021; 45(6): 101760.     CrossRef
  • E‐Health and remote management of patients with inflammatory bowel disease: lessons from Denmark in a time of need
    Dorit V. Ankersen, Savannah Noack, Pia Munkholm, Miles P. Sparrow
    Internal Medicine Journal.2021; 51(8): 1207.     CrossRef
  • Patient Experience and Satisfaction with an e-Health Care Management Application for Inflammatory Bowel Diseases
    Aria Zand, Audrey Nguyen, Courtney Reynolds, Ariela Khandadash, Eric Esrailian, Daniel Hommes
    International Journal of Environmental Research and Public Health.2021; 18(22): 11747.     CrossRef
  • Developments and challenges of e-health strategies for people with inflammatory bowel disease
    Pearl Avery
    British Journal of Healthcare Management.2020; 26(3): 73.     CrossRef
  • Development and feasibility of a telemonitoring tool with full integration in the electronic medical record: a proof of concept study for patients with inflammatory bowel disease in remission on biological therapy
    Sofie Coenen, Egon Nijns, Ellen Weyts, Patricia Geens, Bart Van den Bosch, Séverine Vermeire, Marc Ferrante, Kris Vanhaecht, Gert Van Assche
    Scandinavian Journal of Gastroenterology.2020; 55(3): 287.     CrossRef
  • Organisational changes and challenges for inflammatory bowel disease services in the UK during the COVID-19 pandemic
    Nicholas A Kennedy, Richard Hansen, Lisa Younge, Joel Mawdsley, R Mark Beattie, Shahida Din, Christopher A Lamb, Philip J Smith, Christian Selinger, Jimmy Limdi, Tariq H Iqbal, Alan Lobo, Rachel Cooney, Oliver Brain, Daniel R Gaya, Charles Murray, Richard
    Frontline Gastroenterology.2020; 11(5): 343.     CrossRef
  • Crohn’s Colitis Care (CCCare): bespoke cloud-based clinical management software for inflammatory bowel disease
    Krupa Krishnaprasad, Alissa Walsh, Jakob Begun, Sally Bell, David Carter, Rachel Grafton, Alexandra Sechi, Karen Sewell, Anna McMahon, Susan Connor, Graham Radford-Smith, Jane M. Andrews
    Scandinavian Journal of Gastroenterology.2020; 55(12): 1419.     CrossRef
  • Exploring the Challenges of Implementing a Web-Based Telemonitoring Strategy for Teenagers With Inflammatory Bowel Disease: Empirical Case Study
    Alie Dijkstra, Anke Heida, Patrick Ferry van Rheenen
    Journal of Medical Internet Research.2019; 21(3): e11761.     CrossRef
  • Digital Health Apps in the Clinical Care of Inflammatory Bowel Disease: Scoping Review
    Andrew Lukas Yin, David Hachuel, John P Pollak, Ellen J Scherl, Deborah Estrin
    Journal of Medical Internet Research.2019; 21(8): e14630.     CrossRef
  • 8,974 View
  • 148 Download
  • 20 Web of Science
  • 20 Crossref
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