Improving incurable head and neck cancer healthcare experiences (ii- HANC)

Background

Research exploring the healthcare experiences and interactions of patients with incurable head and neck cancer (IHNC) across the disease trajectory is an essential first step to understand how best to address needs and improve care. The study aims to improve the experiences of patients with IHNC by finding out the most pressing issues for them and developing solutions to improve these. The study has recently been awarded funding from the NIHR Research for Patient Benefit programme and is currently in the set-up phase. We plan to start recruiting participants in May 2023 and to be able to share the results of the study in December 2024. The study is led by Dr Catriona Mayland.

Why does this research matter?

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 or be understood; 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 are twice as likely to have multiple 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 you live. We need to understand ‘stress points’ in the patients; journey, where things do not go as planned, identify priorities for change and develop patient-led solutions.

How will we do this?

There are two main parts to our work, occurring over 21-months within three areas of North England:

1. 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. We will recruit from places with high poverty, diverse ethnicity, town and country areas and varying distance from the specialist cancer centre.
2.  Using interview and group discussion findings, we will hold a series of workshops with patients, families, clinical service leaders, and healthcare workers. We will identify priorities and develop ways to improve care experiences.

 For more information about the study contact Dr Catriona Mayland