Information needs and oral epithelial dysplasia: Development and psychometric evaluation of a novel instrument

Objectives Oral epithelial dysplasia (OED) can lead to significant information needs (IN) related to the risk of cancer development, the need for long-term monitoring and potential intervention. The present study aimed to develop and perform preliminary psychometric testing for a novel IN instrument specific to OED. Subjects and methods Patients diagnosed with OED were invited to complete the Oral Epithelial Dysplasia Informational Needs Questionnaire (ODIN-Q), which was developed based on a known theoretical framework and with items generated via expert input and the literature. Face validity and content validity were initially assessed prior to finalisation of the tool. ODIN-Q was tested for internal consistency and test-retest reliability along with construct validity. Results ODIN-Q consists of 35 items, categorised under six domains, and rated by dual 4-point Likert scales (amount of information received and degree of importance). Internal consistency (Cronbach's alpha) was rated "excellent" for the scale (0.93) and both subscales (0.92/0.94). For test-retest reliability, moderate agreement was found (kappa = 0.49-0.53). Regarding construct validity, a significant but limited relationship was found between ODIN-Q and the Krantz Health Opinion Survey. Conclusion ODIN-Q showed adequate psychometric properties of reliability and validity. Further validation is, however, needed to assess its structural validity and responsiveness.