Method: 16 patients were recruited to the study. Criterion based sampling was employed to ensure a breadth of patient experience. In depth qualitative interviews allowed the exploration of patients' views and experiences in detail. Interviews were digitally audiorecorded and transcribed verbatim. Data collection and analysis was an iterative process following the principles of the constant comparative method.
Results: Sixteen interviews with 9 men and 7 women aged 43 to 80 were conducted ranging from 15 to 57 minutes in length. Patients' accounts of their experiences provided new insights into their views and understanding of the condition. The emerging themes related to the conceptions and misconceptions of perceived aetiology and risk factors, the impact and experience of treatments on the individual, the apparent significance of the clinician-patient relationship, unmet information needs and the impact of the diagnosis on their everyday lives.
Conclusions: The experience of oral precancer and its associated treatment is variable, for many representing a significant life event. These data suggest that, given the potential for the patient to influence the disease course, more attention needs to be given to meeting the information needs of the individual in order to improve patient understanding of disease and experience of care.