Development and validation of the celiac disease-children’s activities report (CD-chart) for promoting self-management among children and adolescents

Adherence to a restrictive gluten-free diet is the only known treatment for celiac disease (CD). Children and adolescents with CD encounter challenges while managing the diet in daily activities. Understanding their participation characteristics is lacking. The aim was to describe the development and validation process of the Celiac Disease-Children’s Activities Report (CD-Chart). The final CD-Chart includes nine food-related activities that are measured by six core dimensions: frequency, preference, preparation, involvement, help, and self-determination. Participants were 126 children (8–11 years) and adolescents (12–18 years) with CD, and 30 healthy matched controls. Factor analysis was performed and psychometric properties were measured. Content and face validity was established and the CD-Chart showed adequate internal consistency as measured by the preference dimension (α = 0.81). Factor analysis revealed two distinct factors, social environment and close family environment. Construct validity demonstrated that the group with CD required significantly more pre-preparation for food-related activities than controls, (t(38) = 76.25, p < 0.001) and further differences as well as similarities were found between groups. Primary results indicate that the CD-Chart may serve as a practical tool for acquiring information about participation characteristics in food-related activities, strengths and challenges of children and adolescents with CD, to promote self-management, diet adherence, and well-being.