Authors' objectives: Patients with incurable head and neck cancer have considerable unmet needs and complex symptom burden, with evidence of substantial geographical and/or socioeconomic inequalities. Accurate information on healthcare needs, resource utilisation and service provision in the last year of life is lacking. This places limits on service delivery planning and the development and testing of interventions to better meet needs. Our partnership spans three regions, which nationally have some of the highest rates of incurable head and neck cancer. O1. Develop a palliative head and neck cancer network within the North of England, representing a geographical area with high incidence of incurable head and neck cancer and palliative care needs. O2. Develop and refine research questions and priorities. O3. Engage with data providers to identify relevant data sets and specific data fields to understand the potential quality and utility of these to inform research priorities. People with incurable head and neck cancer have very complex needs. The cancer and treatment cause severe difficulties in eating, speaking and breathing as well as pain, isolation and low mood. Because of this, individuals may need to use hospital or emergency care services more often, even towards the very end of their lives. Where individuals live, and how rich or poor the area is, affects whether those with head and neck cancer die at home or in hospital. The North of England has a relatively high number of people who die from head and neck cancer.

Authors' results and conclusions: WP1: A diverse network was established, encompassing members from a wide range of professions and patient/carer groups. WP2: The Delphi consisted of two rounds involving up to 66 participants. Consensus was reached on 12 research questions representing 4 key areas of prioritisation: service provision, symptom management, psychosocial support and information provision and communication. WP3: A range of national and local data sources were identified as having the potential to address the research priorities. A directory of data sources was developed. Working in an iterative way, data sets and relevant data fields were mapped to the 12 potential research priority areas to assess the applicability of using routine data to address these priorities. The network has established a cross-sectoral collaboration for improving incurable head and neck cancer and a platform to identify 12 research priority areas. Utilising routine data to address these priorities remains a challenging area, and a range of methodological research approaches will be required to take this forward.

Authors' methods: There were three interconnected work packages: WP1: A ‘snowballing’ approach to establish a network of clinicians, researchers, patient and public representatives, data architects and key stakeholders with an interest in head and neck cancer palliative care. WP2: A Delphi consensus process to develop and refine research questions and priorities, based on national guidance and systematic reviews of evidence gaps. WP3: Identification of national and local data sets and exploration of the potential data quality and utility, and associated information governance processes for access. Approximately, one-third of participants in the Delphi process dropped out in round 2. Despite attempts to be flexible in our approach, retaining participants, particularly for patients and their families on a palliative care pathway, is challenging.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hta/NIHR135361

Year Published: 2025

URL for published report: https://www.journalslibrary.nihr.ac.uk/hta/published-articles/TKLD6486

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/TKLD6486

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk