Alamoudi, Waleed; (2025) Patient Education in Oral Epithelial Dysplasia – The EDUCAT-ED Study. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Oral epithelial dysplasia (OED) is a chronic, potentially malignant disorder that can progress to oral squamous cell carcinoma (OSCC). Despite the clinical significance of OED, research into the educational needs of affected individuals remains scarce. This thesis aimed to investigate the scope, quality, and effectiveness of patient education (PE) in OED through a four-part mixed-methods approach: (1) a systematic evaluation of existing online resources, (2) a qualitative exploration of patient experiences, (3) a cross-sectional quantitative assessment of patient knowledge, and (4) a psychometric validation of the oral epithelial dysplasia informational needs questionnaire (ODIN-Q). In the first phase, a systematic review revealed that most publicly available online OED educational materials were limited in accuracy, comprehensiveness, and readability, with minimal coverage of key domains such as risk factors, treatment options, and psychosocial support. The second phase involved qualitative interviews with patients living with OED. Thematic analysis revealed four main challenges: informational gaps at diagnosis, emotional distress, poor care continuity, and inconsistent delivery of PE. In the third phase, a quantitative study involving 102 individuals assessed disease-specific knowledge using the ODIN-Q. Approximately half of the cohort demonstrated insufficient knowledge, particularly in areas such as human papilloma virus, lifestyle adjustments, psychological support, and navigating healthcare services. Most participants preferred one-on-one meetings with OED specialists as their primary mode of receiving information. The final phase evaluated the structural validity and responsiveness of the ODIN-Q. Confirmatory factor analysis supported a six-domain model—general knowledge, investigative procedures, treatments, physical and psychosocial aspects, and access to information—despite some suboptimal fit indices. Responsiveness testing, following an educational intervention using a patient leaflet, revealed small to moderate improvements in informational scores across several domains, affirming the ODIN-Q's utility in measuring dynamic patient information needs. Collectively, this thesis confirms that individuals with OED experience considerable unmet educational needs and demonstrates that patient-centred tools like the ODIN-Q can identify and track those needs. The findings support the integration of targeted, multimodal PE strategies—anchored in validated measurement tools—into the clinical management of OED. These efforts are essential for improving patient understanding, engagement, psychological well-being, and long-term outcomes. Future research should focus on longitudinal validation of the ODIN-Q, comparative analyses of educational delivery methods, and adaptation for culturally diverse populations.

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