Development and Validation of the Celiac Disease-Children’s Activities Report (CD-Chart) for Promoting Self-Management among Children and Adolescents

Abstract

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.

Mobile Application for Promoting Gluten-Free Diet Self-Management in Adolescents with Celiac Disease: Proof-of-Concept Study

“…The purpose of this study was to create and pilot test the Plan My C-Day application and to examine its usability among adolescent users with CD. The creation of this application was theoretically based on the cognitive components required in self-management and findings from previous research involving adolescents with CD [11,34]. User behavior while using the application was collected, as was users' feedback regarding their perceptions of the application's usability and contribution to self-management.…”

“…Nevertheless, that users chose half of the actions more than once reinforces the suitability of the actions provided in the application. As previously mentioned, this array of choices was based on actions originally generated by children and adolescents with CD when interviewed during the development of the CD Chart questionnaire [34].…”

“…The main functionality of this first version of the application is the simulation of preparing oneself to participate in away-from-home food-related events. Three food-related events were chosen for this purpose based on the event included in the previously developed CD Chart questionnaire [34]: eating out with friends, a meal on a family vacation, and a meal during a school fieldtrip (Figure 1). After choosing one of the three simulation activities, the user is invited to select from a list of actions that they would plan to do to participate in the upcoming activity while maintaining a gluten-free diet.…”

“…After choosing one of the three simulation activities, the user is invited to select from a list of actions that they would plan to do to participate in the upcoming activity while maintaining a gluten-free diet. These actions were previously generated by children and adolescents with CD when interviewed by the first author as part of the CD Chart development [34]. For this study, the researchers selected 66 optional actions that users could perform before participating in the food-related activity, and these actions were organized into eight categories to make finding and choosing them more accessible, based on the main action characteristics: ask, prepare, check, avoid, take, collaborate, call, and say (Table 1).…”

“…However, to date, no application has been found that focuses specifically on developing self-tailored self-management cognitive skills (e.g., decision-making, plan execution, flexibility, and problem-solving) for adolescents with CD while maintaining their strict gluten-free diets and participating in their daily activities [11,15,34]. Hence, we proposed an application that focuses on the planning stage before taking part in food-related activities that adolescents encounter in their daily lives inside and outside of their home environment, based on the previously published Celiac Disease Children's Activities Re-port (CD-Chart) [34]. Contrary to existing applications, the focus of this application is on planning and choosing the actual actions that the adolescents need to take before the event to successfully manage and maintain the diet while participating in the event and self-rating the created plan.…”