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P294 Distress in inflammatory bowel disease: development of a new assessment tool

L. Dibley*1, W. Czuber-Dochan1, S. Woodward1, P. Bassett2, J. Sturt1, C. Norton1

1King’s College London, Florence Nightingale Faculty of Nursing & Midwifery, London, United Kingdom, 2Statsconsultancy, Medical Statistician, Amersham, United Kingdom

Background

We noticed undercurrents of distress (as distinct from anxiety and depression) in data from our previous IBD studies. Disease-related distress affects well-being in other chronic conditions (eg, diabetes), but the correlation not been explored in IBD. We aimed to identify if distress is a major feature of IBD, and develop a new clinically useful scale for assessing IBD distress.

Methods

In Phase 1, we performed a secondary analysis of qualitative data from 4 previous IBD studies, finding evidence of distress in all, although no one investigated the concept. We then conducted a focus group exploring the experience of distress in community-dwelling people with IBD. Findings of the focus group and secondary analysis created items for a draft IBD-Distress Scale (IBD-DS), tested over 3 rounds of cognitive interviews and amended according to interviewees’ comments. Response patterns informed removal of redundant items. The final draft IBD-DS contained 55 items across 5 themes (Medical Matters; Work, Study, & Career; Everyday Living & Coping; Family & Friends; and Social Situations). Respondents indicated their level of distress for each item, and overall, using the scale 1 (mildly distressed) to 6 (highly distressed). They also recorded self-assessed disease activity (in remission, mild flare, moderate flare, and severe flare) on the day of completion, and their 3 most distressing issues. In Phase 2, initial validation of the IBD-DS was achieved via test-retest. Respondents also completed the Hospital Anxiety and Depression Scale (HADS)2 and the Diabetes Distress Scale (DDS)2 during test, and the relevant disease activity index during test and retest.

Results

In total, 15 people took part in cognitive interviews. Further, 275 people received the test IBD-DS, and 166 responded (60.4%). Of these, 136 returned the retest IBD-DS (82%). Test data analysis shows IBD-DS scores to have a significant positive correlation (all p < 0.001) with both HADS scores and the DDS. Intraclass correlation (ICC) shows good agreement between test-retest scores on 94 complete data sets (ICC 0.94; 95% CI). Response rates, kappa values, and correlation coefficients informed removal of 27 of the original 55 items. Patients have reviewed and endorsed these amendments.

Conclusion

The IBD-DS, at this early stage of validation, has 28 items, a 1–6 distress scale per item (0–6 overall), and self-assessed disease activity. Using free text, patients may highlight their foremost distressing issues. The test performs well alongside existing validated scales and offers a useful, brief clinical tool for assessing distress in IBD patients.

References

[1] Zigmond A, Snaith, RP. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavia 1983;67:361–70.

[2] Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial distress in diabetes. Diabetes Care 2005;1983;28(3):626–31.