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

Abstract

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 (κ = 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

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