Abstract
OBJECTIVES: This study aims to explore the patients' experiences with oral epithelial dysplasia (OED) to identify associated clinical challenges and informational needs. METHODS: Semi-structured interviews, guided by a topic outline, addressed disease-specific information, investigative procedures, treatments, impacts on quality of life, healthcare systems and information sources. The interviews were audio recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: A total of 30 individuals participated in the study. Four primary themes were identified: delays in diagnosis, knowledge about OED, the psychological impact of the disease and patient education. CONCLUSION: To our knowledge, this is the first qualitative study to explore the lived experiences of patients with OED. It highlights significant challenges, including accessing appropriate medical services, delays in diagnosis, physical and psychological burdens and the need for better education. Positive experiences were noted when patients received care from knowledgeable clinicians who provided consistent education and effective communication. The findings of this study may guide the future development of measurement tools on the outcome measures of individuals with OED.