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Identifying disease-specific distress in patients with inflammatory bowel disease

Research output: Contribution to journalArticlepeer-review

Sue Woodward, Lesley Dibley, Sarah Combes, Andrew Bellamy, Calum Clark, Wladyslawa Czuber-Dochan, Leslie Everelm, Sandra Kutner, Jackie Sturt, Christine Norton

Original languageEnglish
Pages (from-to)649-660
Number of pages12
JournalBritish Journal of Nursing
Issue number12
Early online date25 Jun 2016
Accepted/In press1 Jun 2016
E-pub ahead of print25 Jun 2016


King's Authors


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

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