title: Identifying disease-specific distress in patients with inflammatory bowel disease.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Head of Clinical Education, Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Sue
authors.initials: S
authors.lastname: Woodward
authors.affiliation: Lecturer, Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Lesley
authors.initials: L
authors.lastname: Dibley
authors.affiliation: Student, Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Sarah
authors.initials: S
authors.lastname: Coombes
authors.affiliation: Patient representative.
authors.forename: Andrew
authors.initials: A
authors.lastname: Bellamy
authors.affiliation: Patient representative.
authors.forename: Calum
authors.initials: C
authors.lastname: Clark
authors.affiliation: Tutor, Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Wladyslawa
authors.initials: W
authors.lastname: Czuber-Dochan
authors.affiliation: Patient representative.
authors.forename: Leslie
authors.initials: L
authors.lastname: Everelm
authors.affiliation: Patient representative.
authors.forename: Sandra
authors.initials: S
authors.lastname: Kutner
authors.affiliation: Professor, Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Jackie
authors.initials: J
authors.lastname: Sturt
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwifery, King's College London.
authors.forename: Christine
authors.initials: C
authors.lastname: Norton
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000523:psychology*; D017281:Cost of Illness; D003863:Depression / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D013315:Stress, Psychological / Q000523:psychology*; D055815:Young Adult
keywords: Crohn's Disease; Distress; IBD-distress; Inflammatory bowel disease; Ulcerative colitis