Neel Sharma1, Edo Savelkoul2, Benjamin Disney3, Ashit Shah4, Shanika De Silva5, Sanjeev Pattni6, Marietta Iacucci7, Rachel Cooney8, Subrata Ghosh7. 1. Institute of Immunology and Immunotherapy, Queen Elizabeth Hospital Birmingham, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK. n.sharma.1@bham.ac.uk. 2. Radboud University Nijmegen, Nijmegen, Netherlands. 3. University Hospitals Coventry and Warwickshire, Coventry, UK. 4. The Royal Wolverhampton NHS Trust, Wolverhampton, UK. 5. The Dudley Group NHS Foundation Trust, Dudley, UK. 6. Leicester Royal Infirmary, Leicester, UK. 7. NIHR Biomedical Research Centre, Queen Elizabeth Hospital Birmingham, Institute of Translational Medicine, University of Birmingham, Birmingham, UK. 8. Institute of Immunology and Immunotherapy, Queen Elizabeth Hospital Birmingham, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.
Abstract
BACKGROUND: IBD, both Crohn's disease and ulcerative colitis, is associated with significant functional disability. Gastrointestinal symptoms alone are not the sole purpose of the interaction between patients and providers. In order to ascertain patients' disabilities, we utilized the recently developed IBD Disk to help determine their functional concerns and initiate relevant conversation. We aimed to ascertain patient acceptability and their major disabilities. PATIENTS AND METHODS: In this multicenter study, IBD patients at their outpatient visit were given the paper version of the IBD Disk. Patients were asked to score their level of disability for each item of the IBD Disk. The completed scores were then shared with their healthcare provider to act as a focus of discussion during the consultation. Patients and clinicians were also asked to provide informal qualitative feedback as to the benefits of the IBD Disk and areas for improvement. RESULTS: A total of 377 (female 60%) patients completed the questionnaires over the study period. Patient acceptability scored on a 0-10 Likert scale was excellent. All patients scored all domains of disability. Sleep, energy, and joint pain were the highest scoring domains of the IBD Disk, scoring higher than digestive symptoms. Clinicians and patients agreed that the IBD Disk allowed for ease of communication about disability symptoms and relevance to their day-to-day functioning. CONCLUSION: The IBD Disk is a novel easy-to-use tool to assess the functional disability of patients. We next plan to utilize it in the form of an electronic app internationally and in relation to treatment commencement and escalation.
BACKGROUND: IBD, both Crohn's disease and ulcerative colitis, is associated with significant functional disability. Gastrointestinal symptoms alone are not the sole purpose of the interaction between patients and providers. In order to ascertain patients' disabilities, we utilized the recently developed IBD Disk to help determine their functional concerns and initiate relevant conversation. We aimed to ascertain patient acceptability and their major disabilities. PATIENTS AND METHODS: In this multicenter study, IBD patients at their outpatient visit were given the paper version of the IBD Disk. Patients were asked to score their level of disability for each item of the IBD Disk. The completed scores were then shared with their healthcare provider to act as a focus of discussion during the consultation. Patients and clinicians were also asked to provide informal qualitative feedback as to the benefits of the IBD Disk and areas for improvement. RESULTS: A total of 377 (female 60%) patients completed the questionnaires over the study period. Patient acceptability scored on a 0-10 Likert scale was excellent. All patients scored all domains of disability. Sleep, energy, and joint pain were the highest scoring domains of the IBD Disk, scoring higher than digestive symptoms. Clinicians and patients agreed that the IBD Disk allowed for ease of communication about disability symptoms and relevance to their day-to-day functioning. CONCLUSION: The IBD Disk is a novel easy-to-use tool to assess the functional disability of patients. We next plan to utilize it in the form of an electronic app internationally and in relation to treatment commencement and escalation.