Oral Epithelial Dysplasia Information Needs Questionnaire (ODIN-Q): Responsiveness and Insights Into Patient Education

BACKGROUND: The Oral Epithelial Dysplasia Informational Needs Questionnaire (ODIN-Q) was developed to assess the informational needs of patients with oral epithelial dysplasia (OED), a precancerous disorder associated with an increased risk of malignant transformation. This study aimed to evaluate the responsiveness of the ODIN-Q following an educational intervention using a written patient information leaflet about OED.

METHODS: A prospective pre-post observational study was conducted at the Oral Medicine Unit at University College London Hospitals, between March 2023 and March 2025. Fifty patients with histologically confirmed OED completed the previously validated ODIN-Q before and after reading the leaflet. Differences between pre- and post-reading ODIN-Q scores were analysed using descriptive statistics and Cohen's d to determine effect sizes and responsiveness.

RESULTS: Fifty participants (29 females, 21 males; mean age = 65 years) were included in the analysis. Overall ODIN-Q scores increased from 2.44 to 2.71, with a small overall effect size (d = 0.30; 95% CI: 0.01-0.59). The highest responsiveness was observed in the medical system and access to information domain (+0.42; +19%; d = 0.49; 95% CI: 0.19-0.79), followed by psychosocial aspects (+0.29; +12%; d = 0.38; 95% CI: 0.09-0.67) and physical aspects (+0.28; +11%; d = 0.36; 95% CI: 0.07-0.65). Other domains showed negligible to small responsiveness (investigative tests: d = 0.11; 95% CI: -0.18-0.40).

CONCLUSIONS: The ODIN-Q demonstrates preliminary evidence of responsiveness to changes in patients' informational needs following educational interventions, supporting its potential use as a multidomain measure for evaluating and guiding patient-centred education in OED.