Patient and professional views and experience of oral precancer

Abstract

Oral precancer (OPC) is a collective term for a number of disorders that may precede oral cancer. Treatment is aimed at preventing malignant transformation however, this is complicated by a lack of robust evidence concerning both treatment effectiveness and future cancer risk. Uncertainties surrounding prognosis and treatment options might be expected to impact on a patient’s experience of their disease, as well as creating challenges for their management. The aim of this research was to explore the experience of OPC through the eyes of the patient and clinician to assess the impact of living with oral precancer and enable the identification of opportunities to improve outcomes.

The project comprised two qualitative studies, each employing semi-structured interviews. 28 patients with OPC, were recruited for study A, while 11 Oral and Maxillofacial Consultants were involved in study B. Data collection and analysis was iterative, following the principles of the ‘constant comparative’ method (Glaser 1965). Data collection stopped when data saturation was achieved. The data were analysed using thematic analysis.

The results indicated that during the diagnosis and management of OPC, clinicians were faced with challenges. These included: communicating a diagnosis, (particularly in terms of terminology), conveying risk meaningfully, meeting patients’ additional information needs, encouraging behaviour change and making treatment decisions. The patient data indicated that for some, OPC represents a devastating diagnosis leading to feelings of fear and uncertainty impacting significantly on the individual’s life. In addition, analysis also allowed a disease journey to be mapped and directly related to the findings from the clinician group thereby indicating opportunities where changes in practice may improve patient care. These points included: the diagnosis, where understanding terminology and comprehending risk were problematic, following a diagnosis, where meeting information needs was a challenge and during the management and review stages when treatment decisions were made and carried out.