Ii-HANC Improving Incurable Head and Neck Cancer Healthcare Experiences

NCT05714436 | Completed

• 1 other identifier: STH21983
• Study Type: observational
• Target: 69
• Locations: 1 country
• Sites: 1

Brief Summary

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. 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. 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.

Conditions

Head and Neck Cancer

Outcome Measures

Primary Outcomes (3)

• Completion of interviews in Work Package 1a

  Completion of interviews in Work Package 1a

  Within 18 months of consent

• Completion of on-line focus groups in Work Package 1b

  Completion of interviews in Work Package 1a

  Within 12 months of being involved in the care of HNC patients

• Completion of co-design workshops in Work Package 2

  Completion of co-design workshops in Work Package 2

  Within 20 months of consent

Study Arms (3)

Work Package 1a

Longitudinal interviews with patients and family carers to generate thematic framework for co-design workshops

Work Package 1b

On-line focus groups with healthcare professionals to generate thematic framework for co-design workshops

Work Package 2

Co-design workshops to generate decisions about priority areas for intervention development

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with Head and Neck Cancer and their carers/ family. Healthcare Professionals

You may qualify if:

• 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

You may not qualify if:

• 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.

Sponsors & Collaborators

• Sheffield Teaching Hospitals NHS Foundation Trust: lead
• University of Sheffield: collaborator
• University of Newcastle Upon-Tyne: collaborator
• University of Liverpool: collaborator
• Lancaster University: collaborator

Study Sites (1)

Sheffield Teaching Hospitals NHS Foundation Trust

Sheffield, South Yorkshire, S10 2JF, United Kingdom

Location

MeSH Terms

Conditions

Head and Neck Neoplasms

Condition Hierarchy (Ancestors)

Neoplasms by Site; Neoplasms

Study Officials

• Catriona Mayland

  Sheffield Teaching Hospitals NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 26, 2023
• First Posted: February 6, 2023
• Study Start: April 19, 2023
• Primary Completion: December 31, 2024
• Study Completion: December 31, 2024
• Last Updated: April 25, 2025

Record last verified: 2025-04

Locations

GB (1)