title: Development and psychometric testing of inflammatory bowel disease fatigue (IBD-F) patient self-assessment scale.
abstract: OBJECTIVE
  Fatigue is one of the main symptoms of inflammatory bowel disease (IBD) and is frequently reported by people in both active and quiescent disease. Many different fatigue assessment scales have been used to measure fatigue, but none has been developed or tested in IBD. This study aimed to develop a fatigue scale specific to the needs and experiences of people with IBD.
  
  
  METHODS
  A five-step sequential mixed method design was used: a qualitative phase to assess patients' experience of fatigue and its impact on their lives, and four mixed qualitative-quantitative phases to refine the scale and to assess its psychometric properties.
  
  
  RESULTS
  567 people participated in five phases. The resulting questionnaire has 3 sections: 5 questions assessing frequency and severity of fatigue; 30 questions rating the experience and impact of fatigue; and a free-text section asking for patients' comments and additional issues related to fatigue. Initial validation suggests that the questionnaire has good face and content validity, acceptable to excellent test-retest stability (ICC 0.74 for Section 1 and 0.83 for Section 2) and a high degree of internal consistency (Cronbach's alpha>0.9).
  
  
  CONCLUSIONS
  Participants in the study confirmed that fatigue in IBD is burdensome. Items generated and refined by people with IBD-fatigue reflect their experience and form the basis of this new IBD-fatigue scale, which is psychometrically robust with reliability estimates which fall within statistically acceptable ranges. The scale can be used by patients and practitioners to assess severity and impact of fatigue in people with IBD.
authors.affiliation: King's College London, Florence Nightingale School of Nursing & Midwifery, London, United Kingdom. Electronic address: wladzia.czuber-dochan@kcl.ac.uk.
authors.forename: Wladyslawa
authors.initials: W
authors.lastname: Czuber-Dochan
authors.affiliation: King's College London, Florence Nightingale School of Nursing & Midwifery, London, United Kingdom.
authors.forename: Christine
authors.initials: C
authors.lastname: Norton
authors.affiliation: Statsconsultancy, Amersham, United Kingdom.
authors.forename: Paul
authors.initials: P
authors.lastname: Bassett
authors.affiliation: Crohn's and Colitis UK, St Albans, United Kingdom.
authors.forename: Stuart
authors.initials: S
authors.lastname: Berliner
authors.affiliation: The Queen Elizabeth Hospital King's Lynn NHS Trust, King's Lynn, United Kingdom.
authors.forename: Francesca
authors.initials: F
authors.lastname: Bredin
authors.affiliation: Crohn's and Colitis UK, St Albans, United Kingdom.
authors.forename: Marcia
authors.initials: M
authors.lastname: Darvell
authors.affiliation: University College London & University College London Hospital, Department of Gastroenterology, London, United Kingdom.
authors.forename: Alastair
authors.initials: A
authors.lastname: Forbes
authors.affiliation: Crohn's and Colitis UK, St Albans, United Kingdom.
authors.forename: Martin
authors.initials: M
authors.lastname: Gay
authors.affiliation: University College London, Department of Gastroenterology and Clinical Nutrition, London, United Kingdom.
authors.forename: Indira
authors.initials: I
authors.lastname: Nathan
authors.affiliation: King's College London, Florence Nightingale School of Nursing & Midwifery, London, United Kingdom.
authors.forename: Emma
authors.initials: E
authors.lastname: Ream
authors.affiliation: Crohn's and Colitis UK, St Albans, United Kingdom.
authors.forename: Helen
authors.initials: H
authors.lastname: Terry
mesh_terms: D000328:Adult; D000368:Aged; D059026:Diagnostic Self Evaluation; D005163:Factor Analysis, Statistical; D005221:Fatigue / Q000175:diagnosis* / Q000209:etiology*; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000150:complications*; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011594:Psychometrics; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Fatigue; Inflammatory bowel disease; Psychometric properties; Self-assessment questionnaire