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A Multicenter Study of Patient Acceptability of the IBD Disk Tool and Patient-Reported Disabilities

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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.

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Acknowledgments

The authors would like to acknowledge all patients that agreed to take part in this audit study.

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Authors and Affiliations

  1. Institute of Immunology and Immunotherapy, Queen Elizabeth Hospital Birmingham, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK

    Neel Sharma & Rachel Cooney

  2. Radboud University Nijmegen, Nijmegen, Netherlands

    Edo Savelkoul

  3. University Hospitals Coventry and Warwickshire, Coventry, UK

    Benjamin Disney

  4. The Royal Wolverhampton NHS Trust, Wolverhampton, UK

    Ashit Shah

  5. The Dudley Group NHS Foundation Trust, Dudley, UK

    Shanika De Silva

  6. Leicester Royal Infirmary, Leicester, UK

    Sanjeev Pattni

  7. NIHR Biomedical Research Centre, Queen Elizabeth Hospital Birmingham, Institute of Translational Medicine, University of Birmingham, Birmingham, UK

    Marietta Iacucci & Subrata Ghosh

Authors
  1. Neel Sharma
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  2. Edo Savelkoul
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  3. Benjamin Disney
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  4. Ashit Shah
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  5. Shanika De Silva
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  6. Sanjeev Pattni
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  7. Marietta Iacucci
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  8. Rachel Cooney
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  9. Subrata Ghosh
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Contributions

NS led the study, recruited patients for the study, co-analyzed the data and prepared the manuscript. ES recruited patients for the study and co analyzed the data, during his visiting fellowship. BD, AS, SDS, SP, and RC designed the study and recruited patients for the study. MI recruited patients for the study and agreed to the final manuscript. SG conceptualized the study, co-analyzed the data and agreed to the final manuscript.

Corresponding author

Correspondence to Neel Sharma.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

The IBD Disk is a novel tool designed to assess patients’ functional disability. Here, we present the findings of its use in the outpatient setting across NHS Hospitals in the West and East Midlands UK and demonstrate its value in undertaking a patient-centered consultation. The study received institutional approval at each participating center as an NHS audit project courtesy of the Clinical Audit Registration & Management System (CARMS15784) for identification of the frequency of disabilities in clinical practice.

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Sharma, N., Savelkoul, E., Disney, B. et al. A Multicenter Study of Patient Acceptability of the IBD Disk Tool and Patient-Reported Disabilities. Dig Dis Sci 67, 457–462 (2022). https://doi.org/10.1007/s10620-021-06893-8

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  • DOI: https://doi.org/10.1007/s10620-021-06893-8

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