Patient and Caregiver Experience of Diagnosis, Treatment, and Living With Recurrent Oropharyngeal Cancer.

Importance: The management of recurrent oropharyngeal cancer (rOPC) is complex. Curative options carry considerable risk of morbidity with overall poor prognosis. Little data exist on function and quality of life (QoL) outcomes for noncurative treatments. Even less is known about patient and carer experiences of function and QoL change over time when undergoing curative or noncurative treatment(s) for rOPC.

Objective: To investigate the patient and caregiver experience of diagnosis, treatment, and living with recurrent oropharyngeal cancer and changes to function/QoL.

Design, setting, and participants: A longitudinal prospective and retrospective qualitative study was carried out at a specialist cancer center in the United Kingdom. Participants with a biopsy proven diagnosis of recurrent OPC and their caregivers were included. Participants were recruited between December 2022 and November 2023. Concurrent data analysis took took place between November 2023 and January 2024.

Exposure: Curative salvage surgery or noncurative immunotherapy, chemotherapy, or clinical trials of investigational agents.

Main outcomes: A framework-approach thematic analysis of semistructured, in-depth interviews.

Results: Twenty-two patients and 7 caregivers were recruited. Demographic data was collected via medical record review. The longitudinal sample included 8 male and 2 female individuals, and the median age was 62 (range, 47-77) years. The retrospective sample included 11 male individuals and 1 female individual, and the median age was 64 (range, 59-70) years. Eleven participants (50%) underwent curative treatment, and 11 (50%) noncurative treatment.Treatments included salvage surgery, immunotherapy, chemotherapy, or clinical trials. Patients and their caregivers contextualize their experience of recurrent disease in their past experience of primary disease diagnosis and treatment. Patients want to survive and when the options to choose between are cure or functional outcomes impacting health-related QoL, cure appears to be favored. However, when cure is not an option, patients appear to want to survive as long as possible. However, as the prognosis gets shorter there appears to be a shift in priorities where function/QoL take precedence over survival.

Conclusions and relevance: This qualitative study found that treatment decision-making is extremely complex in the setting of rOPC. Quite often, decisions are made based on what is perceived by health care professionals to be functionally "too morbid" with salvage surgery, or "kinder" with life-prolonging noncurative treatments. However, patients are not always fully involved in these decisions and so shared decision-making does not always happen. To facilitate shared decision-making and informed consent, patients need to be given clear and accurate information on survival and function/QoL outcomes for the various treatment modalities for rOPC.