NCT05714436Completed
Ii-HANC Improving Incurable Head and Neck Cancer Healthcare Experiences
Understanding and Identifying Priorities for Improving the Healthcare Experiences of People With Incurable Head and Neck Cancer: a Qualitative Investigation and Co-design Approach
Source: ClinicalTrials.gov · Last updated 25 Apr 2025
Brief summary (registry, in English)
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. 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. 2. 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.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 69 (actual)
- First submitted
- 26 Jan 2023
- Start date
- 19 Apr 2023
- Primary completion date
- 31 Dec 2024
- Lead sponsor
- Sheffield Teaching Hospitals NHS Foundation Trust
- Diseases
- Head and neck cancer
- NCT number
- NCT05714436
What you commit to
- Study type: Observational
- Participants enrolled: 69
- From 19 Apr 2023 to the primary completion date, 31 Dec 2024
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- INTERVIEWS WITH PATIENTS AND CARERS
- Unable to provide fully informed written consent FOCUS GROUPS WITH HEALTHCARE PROFESSIONALS
- Unable to provide informed consent
- Unable to participate in an online focus group, when required.
Who the study is looking for
- INTERVIEWS WITH PATIENTS AND CARERS
- Have a clinical diagnosis of incurable HNC where the intent of any treatment is palliative, including those with:
- incurable primary HNC
- recurrent or persistent HNC not amenable for further curative treatment
- metastatic disease
- other 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' choice
- Are \>= 18 years old
- Able to give informed consent
- Reside within the networks covered by the three chosen HNC centres
- Or are/was a family carer (\>= 18 years old) to someone participating in the study.
- FOCUS GROUPS WITH HEALTHCARE PROFESSIONALS
- Any HCP who has been involved in the case of incurable HNC patients over the last 12 months
- Works 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 old
- Able to give informed consent
- Able to participate in an online focus group, when required.
Age in the registry: 18 years to - · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Sheffield Teaching Hospitals NHS Foundation Trust Coordinator of this site? Confirm its status | Sheffield | United Kingdom | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.