The development of a Patient Decision Aid (PDA) and Patient Concerns Inventory (PCI) for people diagnosed with recurrent head and neck cancer

Background: Recurrent head and neck cancers (rHNC) present some of the most challenging decision- making in head and neck cancer (HNC) practice. Patients often present with persistent toxicities from previous treatments, significant difficulties with eating, drinking, swallowing and speaking. Collectively these difficulties can have a significant impact on overall quality of life (QoL) and have been linked with increased depression and anxiety.. Any further treatment(s) for recurrent disease will result in further function and QoL morbidity. This compounds an already complex decision-making process regarding curative and non-curative treatment options for the patient and healthcare professionals. Patients report feeling excluded from treatment decision-making and having multiple unmet needs before, during and after treatment for rHNC. Therefore, there is a clear need to improve the care pathway and patient experience so that patients are involved in their treatment decision making, any potential unmet needs are addressed and QoL is maximised. Aim: To address the complexity of treatment decisions and to identify potential unmet needs and provide timely support, this study aims to develop (1) a Patient Decision Aid (PDA) and (2) a Patient Concerns Inventory (PCI) specific to the needs of the rHNC population. Methods: Multiple methods will be adopted for the co-design and prototype development of the tools using pre-existing guidance on PDA and PCI development, including four five main stages: Steering committee assembly Literature review and current evidence synthesis to inform baseline metrics for PDA and PCI content development. Needs assessment with patients and professionals via focus groups and interviews to define content and design of PDA. Two-three stage Delphi study with accompanying patient focus groups to inform content and design of PCI. Prototyping based on the combined findings of stages 1-3 will inform the development of prototype PDA for patients with rHNC (PDA-HN-R) and a PCI-specific to the needs of patient with rHNC (PCI-HN-R). All workstreams will be overseen by a patient and professional steering group who will be consulted for comment and feedback within each workstream. Timeline for delivery: 24 months. Anticipated impact and dissemination: The prototype tools that we develop will subsequently undergo further formal evaluation. The research team will use their networks to build interest in implementation within a subsequent evaluation using their influential multi-disciplinary networks. . The work achieved in this project will inform the development of a protocol for a formal evaluation of the prototypes ready for implementation into clinical practice for patient benefit.