Patient Education in Oral Epithelial Dysplasia - The EDUCAT-ED Study
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Date
2025
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Saudi Digital Library
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.
Description
This thesis is an in-depth exploration of the informational needs of individuals living with oral epithelial dysplasia (OED), bridging key gaps in patient information for more effective patient-centred care models. It comprises four peer-reviewed, published chapters that collectively evaluate the quality of existing patient information sources, capture patient perspectives, quantify informational needs using the oral epithelial dysplasia informational needs questionnaire (ODIN-Q), and test the tool’s psychometric properties.
Findings from this research demonstrated that current online audio-visual educational resources on OED are inadequate in quality, clarity, and practical usefulness, leaving patients vulnerable to misinformation and heightened anxiety. Using qualitative methods, we recorded the experiences of individuals with OED, which revealed persistent psychosocial distress and dissatisfaction with existing communication and support. Quantitative assessment using the ODIN-Q confirmed that patient needs are diverse and extend beyond biomedical knowledge to include psychosocial, behavioural, and system-related domains. Advanced psychometric testing established the ODIN-Q as a valid and reliable instrument capable of systematically identifying these needs in clinical practice.
This research has immediate implications for clinical practice, equipping healthcare professionals with validated tools to personalise patient education and support shared decision-making. It also establishes a replicable model for future development of condition-specific educational tools across other chronic and potentially malignant oral conditions. The full publication of all chapters ensures the wider dissemination and impact of the research within academic, clinical, and patient communities.
Keywords
Mouth precancer, Oral malignancy