PROMs

IBD Disk total score Flow

IBD Disk total score flow

Introduction

Inflammatory bowel diseases [IBD] are disabling disorders. The IBD-Disability Index [IBD-DI] was developed for quantifying disability in IBD patients but is difficult to use. [1,2] The IBD Disk was developed using a consensus-based process to select elements from the IBD-DI that are most likely to be important in assessing a patient's disease burden and had relevance to both the patient and physician. [3] Several items (difficulties with work/education and feeling depressed/anxious) were combined owing to similarities in concept. In addition, the IBD CONNECT Steering Committee included “sexual functions” from the ICF comprehensive core set. The Working Group later also agreed to include “joint pain,” from the IBD-DI and ICF core set. The final IBD Disk included 10 items. Validations of the IBD DISK are currently ongoing. [4]

The IBD Disk total score flow contains the IBD Disk total score questionnaire and associated calculation. After form submission, the IBD Disk total score calculation is executed automatically. It's easy to extend this flow with conditional logic based on the interpretation of the IBD Disk total score calculation.

IBD Disk total score questionnaire

Questions and Scoring

The IBD-Disk consists of 10 questions,   exploring   abdominal   pain,   defecation,   social   life, professional life, sleep, energy, anxiety, self image, sexual functions (private life), and joint pain. Each answer is marked on a 11-point visual analog scale, from 0 to 10, 0 corresponding to “absolutely not” (no complaint) and 10 to “definitely yes” (maximal complaint).

Interpretation

Total score ranges from 0 (=no complaints) to 100 (=maximal complaints).

References

[1] Peyrin-Biroulet L, Cieza A, Sandborn WJ, et al. Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. Gut. 2012;61(2):241-247. doi:10.1136/gutjnl-2011-300049\
[2]Shafer LA, Walker JR, Chhibba T, et al. Independent Validation of a Self-Report Version of the IBD Disability Index (IBDDI) in a Population-Based Cohort of IBD Patients. Inflamm Bowel Dis. 2018;24(4):766-774. doi:10.1093/ibd/izx063\
[3] Ghosh S, Louis E, Beaugerie L, et al. Development of the IBD Disk: A Visual Self-administered Tool for Assessing Disability in Inflammatory Bowel Diseases. Inflamm Bowel Dis. 2017;23(3):333-340. doi:10.1097/MIB.0000000000001033\
[4] Le Berre C, Flamant M, Bouguen G, et al. VALIDation of the IBD-Disk instrument for assessing disability in Inflammatory Bowel Diseases in a French cohort: the VALIDate study [published online ahead of print, 2020 May 17]. J Crohns Colitis. 2020;jjaa100. doi:10.1093/ecco-jcc/jjaa100

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