Background/Objectives: Assessment of disease-specific knowledge levels among children with coeliac disease (CD) is essential to support self-management of their condition. A suitable knowledge assessment tool has not yet been identified that is appropriate for children. The aim of this study was to develop and validate a tool for this purpose. Materials and Methods: Using content synthesis of available literature, a CD knowledge assessment tool (CD-Know) was developed to include items shown to be relevant to the management of CD for children. CD-Know went through development stages of expert review, two rounds of pilot/validation testing, and item response analysis. CD-Know scores were compared between participant groups using a univariate linear model. Results: CD-Know was developed using content synthesis and review by international CD experts. CD-Know was initially piloted among adults/children with CD (n = 12) and underwent the first validation study (n = 330 participants) among adults/children with CD, cohabitants, healthcare professionals (HCPs), and groups without CD. Based on item response analysis the tool was modified. The phases of the pilot (n = 7) and validation studies were repeated among refined groups (n = 230). The final 15-item CD-Know demonstrated an appropriate hierarchy of knowledge between testing groups. Children with CD scored lower than cohabitants of someone with CD (mean difference (MD) -3.0, SD 0.4, p p = 0.009), at a similar level to adults without CD (MD 0.6, p = 0.88), and higher than children without CD (MD 5.8, p p = 0.017). Test-retest reliability had a good intraclass correlation coefficient (R 0.73, p = 0.003). Internal consistency was good (Cronbach's alpha 0.71). Conclusions: CD-Know is a validated tool to assess disease-related knowledge in children diagnosed with CD. Its potential applications include identifying areas for knowledge enhancement within the population and assessment of CD interventions.
Hall et al. (Mon,) studied this question.