Routes to and experiences of a diagnosis of head and neck cancer

Abstract

Head and neck cancer (HNC) is currently the 6th most diagnosed cancer worldwide and is a growing problem. Many HNC are diagnosed at a late stage and patients are generally diagnosed due to the presence of symptoms. However, symptoms can be vague and easily mistaken for benign conditions. There is little understanding of the HNC pathway and there are many different elements that can impact negatively in terms of experiences and outcomes. This thesis will explore the routes to diagnosis for HNC patients to understand what impacts experiences. A multi-method approach was utilised. Study 1 is an analysis of routine data from Public Health England, in which all HNC patients diagnosed between 2006-2014 (68,752 patients) had been assigned a “route to diagnosis”. Studies 2-5 involve qualitative interviews with HNC patients (n=19), General Practitioners (n=8), Dentists (n=12), and HNC surgeons (n=8), which are analysed using thematic analysis. Analysis of the routine data highlights the inequalities within the route to diagnosis, in particular the socio-demographic differences of those presenting through each route. The qualitative interviews highlight a lack of knowledge around symptoms, difficulty in understanding and accessing healthcare services, non-explicit communication around potential cancer diagnoses and fragmented communication within primary care and between primary and secondary care. This thesis provides new insights into the routes to diagnosis of HNC, giving a deeper understanding of the experience of progressing towards diagnosis. Placing the work within the context of the Model of Total Patient Delay, adaptions to the model (e.g., consideration of health literacy) are suggested to enable future studies to better understand patient delays. Suggestions are made on elements of the findings which could be incorporated into clinical practice.