Patient Education and Levels of Disease-Specific Information Needs Among Individuals With Oral Epithelial Dysplasia

Oral epithelial dysplasia (OED) is a histological diagnosis that carries an increased risk of the individual developing oral squamous cell carcinoma. We assessed the information needs (IN) and explored the sources of education used by individuals with OED using a validated OED-specific measurement.

A total of 102 adults with OED from the oral medicine clinic of a dental hospital in Central London were selected using convenience sampling. A cross-sectional survey was conducted in which participants completed the 33-item Oral Epithelial Dysplasia Informational Needs Questionnaire (ODIN-Q), which assessed IN and gathered perspectives on patient education.

Approximately two-thirds of the participants (n = 66, 64%) reported meeting the IN, whereas the remaining participants (n = 36, 35%) did not. The mean and median total scores from the questionnaire were 2.43 (± 0.38) and 2.6, respectively, indicating a low sufficient level of IN. Most participants (n = 80, 78%) preferred one-on-one meetings as the primary mode of obtaining information, followed by written materials (n = 64, 62%), audiovisual resources (n = 24, 23%), and group discussions (n = 8, 0.7%).

Some topics were insufficiently met, necessitating additional educational efforts, such as risk factors and lifestyle modifications, physical and psychological impacts, awareness of potential complications, and seeking medical and psychological support. Sex and degree of dysplasia were associated with the levels of IN. These findings may guide future longitudinal research on OED IN assessment, support the creation of tailored educational tools, and facilitate further evaluation of the psychometric properties of the ODIN-Q.