“I thought there would have been pain” A qualitative investigation of patients’ experiences of the route to, and diagnosis of, head and neck cancer.


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Jennifer Deane1,Joanne Patterson1,Linda Sharp1
1Newcastle University

Abstract

Background

Patients with head and neck cancer (HNC) often present late, negatively impacting survival and patient-reported outcomes. HNC can present in seemingly benign ways and there is difficulty in knowing where to seek help. This study aimed to explore the patient experience of the route to diagnosis, using qualitative methods, as an important step to inform future work on reducing delays.

Method

19 patients with a diagnosis of head and neck cancer were recruited through 3 NHS Trusts. Semi-structured face to face interviews were undertaken, guided by a topic guide which covered; experiencing a health problem, engaging with the healthcare system, communication of a diagnosis and knowledge and understanding of cancer. Participants were recruited until data saturation was reached and a thematic analysis conducted on the data.

Results

Seven themes were identified: The C Word (Communication and Cancer); Control; The 2 Week Wilderness; Negotiation and Navigation; Symptoms and Emotional Labour; and Knowledge which underpinned all of the other themes. Patients expected that cancer symptoms would be painful therefore non-painful symptoms were often ignored. They reported that healthcare professionals (HCPs) rarely used the word “cancer” causing confusion around their diagnosis. They described difficulty negotiating and navigating the healthcare system, and often wanted to hand over control to HCPs. Most spoke about the time between biopsies and the confirmed diagnosis as a particularly difficult time where they had minimal access to support. The whole route required patients to manage not only their own emotional response but also the responses of HCPs, their family and friends.

Conclusion

These findings give a deeper understanding of the experience of initially registering a potential symptom to the point of diagnosis in HNC. The results advance knowledge around the needs of patients at different points during the route to diagnosis.