Recurrent oropharyngeal cancer (rOPC) presents some of the most challenging decision-making in head and neck cancer (HNC) practice. Persistent toxicities from previous treatments, including long-term and late swallowing dysfunction, coupled with the potential function and quality of life (QoL) morbidity of further treatment(s) can influence decision-making. National guidelines emphasise that patients must be counselled on the function and QoL morbidity of treatments. However, little is known about the functional morbidity of treatments and essential patient experience data is lacking.
Aim:
To address gaps in the current evidence base with a focus on function, QoL, patient priorities, and patient and carer experience.
Method:
A systematic review was undertaken to investigate if and how function, QoL and patient experience data are collected and reported for patients undergoing curative and non-curative treatments for rOPC. This informed the development and undertaking of a multi-centre mixed methods study to investigate function and QoL outcomes, patient priorities and the patient and carer experience of rOPC which was underpinned by patient and public involvement and engagement (PPI/E) from concept to completion.
Results:
Function and QoL will change with treatment for rOPC. Treatment-related priorities do not and remain focused on cure or survival, with patients acknowledging lower success rates and the possibility of poorer function/ QoL. Patient and carer experiences vary in terms of the opportunity for shared decision-making (SDM), pre-treatment counselling and ongoing support during and following treatment, highlighting an inequity of care.
Conclusion:
Clinical practice needs to focus on the provision of personalised care and SDM where patient concerns, values and priorities define the care, treatment and support provided. This needs to be informed by future research seeking to define core outcomes required to inform this SDM process and to capture the unique and changing needs of patients and their caregivers throughout the treatment pathway.