95 ‘I wouldn’t know who to contact’: understanding and improving healthcare experiences for those with incurable head and neck cancer using serial, qualitative patient interviews

<h3>Introduction</h3> People with incurable head and neck cancer (HNC) experience a complex, unpredictable disease trajectory and a high proportion require emergency department attendance and hospital admission in the last months of life. This impacts on quality of life and is costly to healthcare services. <h3>Aim</h3> To understand experiences of healthcare service use over time for incurable HNC patients and identify solutions for improvement. <h3>Methods</h3> A prospective, longitudinal qualitative study involving three regional HNC centres in the North of England. Maximum variation sampling conducted based on factors influencing experiences (e.g., distance from cancer centre, deprivation, lives alone). Incurable HNC adult (&gt;=18 years) patients, recruited from out-patient clinics, were invited to participate in up to three interviews every four months. Advance consent obtained from next-of-kin (NOK) to be interviewed if patient too unwell/died. Picker’s ‘Principles of Patient-Centred Care’ informed topic guides; analysis conducted using framework approach. <h3>Results</h3> Eighteen patients (male=16, 10=&lt;65 years, 17=White British, 9=living alone) and 6 NOK (5=spouse, 1=child) were recruited. A total of 44 interviews were conducted. Navigating the healthcare system was a key challenge with uncertainty about who to call especially in emergency situations when timely support is imperative. Those with accessible contacts {e.g., key telephone numbers, ability to use digital communication (WhatsApp)}, helped with signposting. Specific individuals acting as advocates e.g., specialist nurses or family members, were vitally important in improving health literacy and health service navigation. Certain clinical situations meant hospital was the most appropriate care environment e.g., breathing difficulties. <h3>Conclusion</h3> In keeping with Picker’s Principles focused on fast access to reliable advice and care continuity, consistent ways to ensure patients have central contact points and system navigators would help support patients. Due to the complexity of care affecting HNC patients, this may mean diverse and novel methods of communication and multidisciplinary team working are required.