Alamoudi Waleed, Riordain Richeal Ni, Fedele Stefano, Porter Stephen
Faculty of Dentistry, King Abdulaziz University, Jeddah, Saudi Arabia.
UCL Eastman Dental Institute, University College London, London, UK.
Oral Dis. 2025 Jul;31(7):2091-2101. doi: 10.1111/odi.15289. Epub 2025 Feb 17.
This study aims to explore the patients' experiences with oral epithelial dysplasia (OED) to identify associated clinical challenges and informational needs.
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.
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.
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.
本研究旨在探究口腔上皮发育异常（OED）患者的经历，以确定相关的临床挑战和信息需求。
在主题大纲的指导下进行半结构化访谈，涉及特定疾病信息、调查程序、治疗方法、对生活质量的影响、医疗保健系统和信息来源。访谈进行录音，逐字转录，并采用主题分析法进行分析。
共有30人参与了该研究。确定了四个主要主题：诊断延误、对OED的认识、疾病的心理影响和患者教育。
据我们所知，这是第一项探索OED患者生活经历的定性研究。它突出了重大挑战，包括获得适当的医疗服务、诊断延误、身体和心理负担以及更好教育的需求。当患者接受来自知识渊博的临床医生的护理，这些医生提供持续的教育和有效的沟通时，会有积极的体验。本研究的结果可能会指导未来关于OED个体结局指标测量工具的开发。
