Ii-HANC Improving Incurable Head and Neck Cancer Healthcare Experiences

This research aims to improve experiences of patients with incurable head and neck cancer (IHNC) by finding out the most pressing issues for them and developing solutions to improve these.Patients with IHNC have many complex needs and the level of support they require is often greater than other illnesses. IHNC symptoms cause major changes to basic functions, such as: being unable to talk; severe swallowing problems with a high choking risk; breathing difficulties requiring a hole in the neck (tracheostomy). The manner of death can be highly traumatic and frightening e.g. catastrophic bleeding from the neck. Despite this poor outlook, little is known about patients' needs in the last year of life. However, IHNC patients have more emergency hospital visits compared with other cancer groups. Patients from poorer areas are more likely to die in hospital. Furthermore, head and neck cancer (HNC) units are centralised, with access to specialist services dependent on where the patient lives.The researcher wishes to understand 'stress points' in the patients' journey, where things do not go as planned, identify priorities for change and develop patient-led solutions.There are two main parts to this work, occurring over 21-months across Yorkshire, Northwest and Northeast England.A series of up to three interviews with approximately 25 IHNC patients and their families, along with group discussions with healthcare workers involved in IHNC care. These will explore how patients' needs and use of healthcare change over time.Using interview and group discussion findings, the study team will hold a series of workshops with patients, families, clinical service leaders, and healthcare workers. The study team will identify priorities and develop ways to improve care experiences.The research is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme.

Inclusion Criteria:INTERVIEWS WITH PATIENTS AND CARERSHave a clinical diagnosis of incurable HNC where the intent of any treatment is palliative, including those with:incurable primary HNCrecurrent or persistent HNC not amenable for further curative treatmentmetastatic diseaseother co-morbidities (including a concurrent primary cancer at another site) meaning curative treatment is either not advised by the MDT or reflected by the patients' choiceAre >= 18 years oldAble to give informed consentReside within the networks covered by the three chosen HNC centresOr are/was a family carer (>= 18 years old) to someone participating in the study.FOCUS GROUPS WITH HEALTHCARE PROFESSIONALSAny HCP who has been involved in the case of incurable HNC patients over the last 12 monthsWorks clinically within the regions of the Northwest, Northeast or Yorkshire (in keeping with the Clinical Research Network areas of the North East and North Cumbria, Northwest Coast and Yorkshire and Humber https://local.nihr.ac.uk/lcrn/).Are >= 18 years oldAble to give informed consentAble to participate in an online focus group, when required.Exclusion Criteria:INTERVIEWS WITH PATIENTS AND CARERSUnable to provide fully informed written consent FOCUS GROUPS WITH HEALTHCARE PROFESSIONALSUnable to provide informed consentUnable to participate in an online focus group, when required.