Grant: Operating Grant: SickKids-CIHR-IHDCYH New Investigator Grants

BACKGROUND: Celiac Disease (CeD) is one of the most common chronic conditions in childhood, with a prevalence of 1% in North America.1 Despite its commonality, there is no consistent approach to clinical monitoring or ongoing health evaluation for pediatric CeD.2 Healthcare professionals lack sufficient evidence on managing important issues like gluten-free diet adherence or the impact of CeD on a child’s quality of life.2,3 To address this gap, a comprehensive patient reported outcome measure (PROM) is needed. We have developed CELIAC-Q Kids, which comprises ten independently functioning scales, including those related to eating behaviours, eating attitudes, psychological and social functioning. The development process to date has included a systematic literature review (Phase 1) and qualitative study to inform the development of the CELIAC-Q Kids scales and items (Phase 2). GOAL: To assess the psychometric properties of CELIAC-Q Kids in an international prospective clinical cohort. SPECIFIC AIMS: 1) Determine which scale items are the most effective in measuring the constructs of interest; 2) Examine reliability and validity of CELIAC-Q Kids using Rasch Measurement Theory (RMT) analysis and traditional psychometric methods; and 3) Promote CELIAC-Q Kids through knowledge translation activities. METHODS: An international field-test will be conducted by administering CELIAC-Q Kids to 500 children and adolescents with CeD from 18 children’s centres across 9 countries in Canada, USA, Europe and Australia. Data will be analyzed using RMT to define the scales’ psychometric properties and inform item reduction, resulting in refined final scales. Internal consistency, test-retest reliability and construct validity of the final CELIAC-Q Kids will then be evaluated. EXPECTED OUTCOMES: CELIAC-Q Kids, once finalized, will be used to measure outcomes that matter most to children with CeD. We anticipate that CELIAC-Q Kids will be used by researchers and pediatric gastroenterologists worldwide to advance knowledge and improve health outcomes in pediatric CeD.