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Identifying disease-specific distress in patients with inflammatory bowel disease

Identifying disease-specific distress in patients with inflammatory bowel disease

Woodward, Sue, Dibley, Lesley ORCID: 0000-0001-7964-7672, Coombes, Sarah, Bellamy, Andrew, Clark, Callum, Czuber-Dochan, Wladzia, Everelm, Leslie, Kutner, Sandra, Sturt, Jackie and Norton, Christine (2016) Identifying disease-specific distress in patients with inflammatory bowel disease. British Journal of Nursing, 25 (12). pp. 649-660. ISSN 0966-0461 (doi:

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Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon.

This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals.

Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress.

Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.

Item Type: Article
Uncontrolled Keywords: Crohn's disease, Distress, Inflammatory bowel disease, Ulcerative colitis
Faculty / School / Research Centre / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > School of Health Sciences (HEA)
Last Modified: 22 Feb 2018 13:18

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