Peer-reviewed article

Developing a Measure to Assess General Knowledge for Coeliac Disease.

Tiffany Lavis, K Ann Horsburgh, Jacqueline F Gould, Elizabeth Bingham Thomas · 1 Apr 2026

Abstract

BACKGROUND: The importance of establishing knowledge about coeliac disease relates to the increasing incidence of symptomatic individuals who are undiagnosed. OBJECTIVES: This study aimed to develop and pilot a tool that could be used to measure general knowledge regarding coeliac disease. DESIGN: A questionnaire was developed using 41 questions identified from an existing 300 published questions, to assess knowledge of symptoms, diagnosis, and management of coeliac disease (such as appropriate food preparation). METHODS: Consenting participants completed the pilot questionnaire online (N = 359). Attrition analyses were conducted to determine whether there were any significant differences between those who completed the questionnaire (n = 284) and participants who left the study. Assessment of the questionnaire occurred in two stages. Initially, internal consistency, correlation, and exploratory factor analyses were conducted on the original 41 questions. Analyses were then repeated for the revised 25 questions, after low-performing questions were removed. RESULTS: Analyses of 284 participant responses indicated that low-performing questions could be removed to consolidate the questions into a single, streamlined scale with 25 questions. Three sub-scales were identified in the final questionnaire: basic knowledge, symptoms, and applied knowledge. CONCLUSIONS: The 41-question measure effectively distinguishes low- and high-levels of knowledge of coeliac disease; however, a streamlined scale of 25 questions can reduce completion time and attrition while maintaining validity. This questionnaire can be used for robust comparisons of knowledge between different populations. This questionnaire also offers a useful tool for identifying specific knowledge gaps, to guide efforts to raise awareness of coeliac disease in the general public, as well as for specific professions, to improve time to diagnosis, as well as food safety. PATIENT OR PUBLIC CONTRIBUTION: One of the authors is the mother of teenage children with coeliac disease. Another author was diagnosed with coeliac disease at the age of 27 years. Another author developed coeliac disease at age 16, after which it took her 19 years to achieve diagnosis. The other author does not have coeliac disease or an immediate family member with coeliac disease. The research team therefore has a productive combination of insiders and outsiders.