Co-production of a post chemoradiotherapy treatment self-management and support intervention for patients diagnosed with head and neck cancer (HNC) and their caregivers.

Scientific Abstract Background: Head and neck cancer (HNC) is the sixth most common cancer worldwide, with rising incidence rates, particularly in oropharyngeal cancer due to HPV. In the UK, over 12,400 new cases are diagnosed annually. Standard treatments, such as chemoradiotherapy, lead to severe side effects, including dysphagia, pain, weight loss, depression, and fatigue, which significantly impact patients' quality of life. These side effects also place a burden on informal caregivers, who must manage complex care needs at home, often with limited support. This study aims to address this gap by developing a web-based self-management and support intervention for HNC patients and their caregivers during the critical post-treatment phase. Objective: To co-produce an evidence-based, patient-centred, web-based self-management and support intervention for HNC patients and their caregivers post-(chemo)radiotherapy treatment. The intervention will address unmet support needs, focusing on enhancing self-management skills and coping strategies for both patients and caregivers. Methods: The study consists of two phases: Phase 1: Semi-structured interviews with up to 25 HNC patients and 20 caregivers will explore their experiences, focusing on the self-management and support strategies that were helpful or lacking during the post-treatment period. Thematic analysis will be conducted to identify key areas for intervention content. Phase 2: Using the results from Phase 1 and a narrative review of relevant literature, the intervention will be co-designed through a series of iterative workshops involving patients, caregivers, and health professionals. The intervention will be web-based, incorporating interactive elements such as patient narratives, self-care simulations, and guidance on accessing support pathways. The prototype will be refined through user testing and further feedback sessions, ensuring the content is accessible and acceptable to the target audience. Expected Outcomes: The self-management intervention is expected to improve patients' and caregivers' ability to manage the physical and psychological side effects of HNC treatment. It aims to reduce hospital readmissions, improve quality of life, and provide long-term support, particularly in underserved groups with higher HNC incidence. The intervention will be hosted on a publicly accessible platform through the large established support group Heads2gether or on Maggie's Cancer charity website. Long term expected outcomes includes further evaluation and plans for integration into NHS recommendations for patients. Impact: This study aligns with the NHS Long-Term Plan's goal of enhancing post-treatment cancer care and addressing the psychosocial needs of patients and caregivers. The intervention has the potential to improve self-management, reduce healthcare burdens, and deliver better long-term outcomes for HNC patients and their caregivers.