Aim: Little information exists regarding parental knowledge of CD at diagnosis. We aimed for assessment of parental information at disease diagnosis to help us develop a tailored coeliac information package.
Methods: Children and teenagers referred for endoscopy and duodenal biopsy, with the sole indication for the diagnosis of CD, were prospectively recruited to the study. Parents were asked information and concerns regarding use of GFD.
Results: Sixty-three children (median 6.9 yrs (IQR 3.71-10.94)) and families were prospectively recruited in the study. The parents were very knowledgeable with an impressive 98% of the parents understanding that GFD is the treatment of CD; 95% knowing that this treatment is for life. However, specific dietary information was lacking with one-third correctly identifying all the Gluten containing foods. Internet (70.6%) was the most common source of information. Knowing someone with CD (p = 0.038), particularly in the same household in the family (p = 0.013) and researching about the disease (p = 0.001) rather than level of parental education (p = ns) was predictive of better parental knowledge.
Conclusion: Internet is a major influence to parental knowledge in today's age but there is a continued need for hospitals regarding provision of accurate information and alleviating anxieties regarding use of GFD.
Keywords: Child; Google; coeliac; gluten-free diet; information; internet; parents.