Abstract
Background: Assessing coeliac disease (CD)–specific knowledge in children is an important means for gauging understanding to assist in effective self-management. However, no validated paediatric tool currently exists. This study aimed to develop and validate an assessment tool suitable for children with CD.
Methods: A draft tool was created through content synthesis of existing tools in literature to include all knowledge areas relevant to paediatric CD management. International experts evaluated the first version using a content validity index, after which the tool underwent iterative piloting and validation with children with CD, and additional comparative groups. The final tool, CD-Know, is a 15 item survey incorporating true/false, yes/no, and multiple choice questions. It is scored as one point for each correct answer to a maximum of 15.
Results: Eleven international experts assessed item relevance in the initial tool. The resulting version was piloted with a small group of adults and children with CD, followed by a validation study with 330 participants across groups (adults and children with CD, cohabitants, healthcare professionals (HCP), and others without CD). Item-response analysis informed modifications, after which further piloting (n=7) and validation (n=230) steps were completed. The final 15 question iteration of CDKnow, showed clear differentiation between groups, strong readability, and good discrimination. Children with CD [N=64 (%) of 230] scored higher than children without CD (MD 5.8, p<0.001), similar to adults that did not have CD (MD 0.6, p = 0.88) and lower than the cohabitants of someone with CD (MD -3.0, SD 0.4, p <0.001) and HCPs (MD -1.7, p <0.009). Among children with CD, higher CD-Know scores were positively associated with stronger gluten-free diet adherence (R = 0.30, p = 0.017). CD-Know had acceptable internal consistency (Cronbach’s α = 0.71).
Conclusions: CD-Know is a rigorously developed and validated tool for assessing CD-related knowledge in children. It demonstrates strong performance in distinguishing levels of understanding, which is relevant to effective self-management and dietary adherence. The tool offers a practical means to detect knowledge gaps and could help to guide and evaluate targeted educational interventions to support children with CD. Further validation in broader clinical and non-clinical settings is warranted to establish its broader applicability and potential to contribute to improving long-term outcomes for children with CD.