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Title: The IBD Control Questionnaire : the development and psychometric validation of a questionnaire for measuring inflammatory bowel disease control from the patient's perspective
Author: Ormerod, Clare Rachel
ISNI:       0000 0004 7964 2400
Awarding Body: University of Liverpool
Current Institution: University of Liverpool
Date of Award: 2019
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Introduction: The importance of patient reported outcome measures (PROMs) is increasingly recognised. However, their use in inflammatory bowel disease (IBD) care is not widespread. The aim of this research was to develop and validate a PROM for use in day to day clinical practice. Methods: (1) Questionnaire development: Questionnaire specification was determined by a multidisciplinary steering group. Literature review of existing PROMs was undertaken. Focus groups meetings and one-to-one patient interviews were performed. Participants were asked to discuss the concept of 'control' of their IBD. Thematic analysis of field notes and transcribed quotes was performed. A draft questionnaire was designed and a pilot study of 30 patients was undertaken. (2) Prospective validation of the IBD Control Questionnaire: Patients completed the IBD-Control Questionnaire and the following established measures: a quality of life questionnaire (UK-IBD-Q), EuroQol (EQ-5D) and the Hospital Anxiety and Depression Score. Disease activity indices were recorded (Harvey-Bradshaw Index or Simple Clinical Colitis Activity Index). A global physician assessment (blinded to questionnaire score) was also performed. Data were recorded at baseline and subsequent hospital visits. The psychometric properties of the questionnaire were determined as detailed below. Results: Core domains of 'physical', 'social', 'emotional' and 'treatment' were identified on the basis of literature review and patient consultation. The pre-defined questionnaire specification was used to guide item selection to represent these domains. The 'IBDControl' questionnaire comprises 13 items plus a visual analogue scale (VAS) (0-100). 299 patients returned baseline surveys (Crohn's disease, n=160; ulcerative colitis, n=139) and 138 attended for repeat visits. Completion time (mean; SD): 1 min 15 s; 25 s; Internal consistency: Cronbach's a for all 13 items (0.85); for subgroup of eight questions ('IBD-Control-8'; 0.86). Strong correlation between IBD-Control-8 and IBDControl- VAS (r=0.81). Test-retest reliability (2 week repeat): intra-class correlation=0.97 for IBD-Control-8 and 0.96 for IBD-Control-VAS. Construct validity: Moderate-to-strong correlations between IBD-Control-8 and IBD-Control-VAS versus activity indices, UKIBD- Q and EQ-5D (utility) with r values 0.52- 0.86. Discriminant validity (mean instrument scores for remission, mild, moderate or severe): p < 0.001 (analysis of variance (ANOVA)). Sensitivity to change: Effect sizes: 0.76-1.44. Sensitivity and specificity to identify quiescent patients: area under the receiver operating characteristic curve 0.90 IBD Control 8, 0.86 IBD Control VAS. Cut off values for identifying quiescent patients: IBD Control 8 - 13 points or more 90.6% specificity, IBD Control VAS - 85 points or more 90% specificity. Conclusion: The IBD Control Questionnaire is a valid patient reported measure of disease control. Its brevity and generic content make it suited to routine clinical care.
Supervisor: Bodger, Keith Sponsor: Not available
Qualification Name: Thesis (M.D.) Qualification Level: Doctoral