A cross-sectional retrospective and prospective service evaluation of head and neck cancer patients' swallowing and quality of life concerns: are we doing enough?

introductionHead and neck cancer (HNC) treatment causes significant functional sequelae including changes to eating, drinking and swallowing. Long-term surveillance currently focuses on the potential identification of disease recurrence yet does not seek to address ongoing quality of life (QoL). We sought to evaluate the potential unmet needs of patients undergoing routine surveillance following curative treatment for primary HNC at a tertiary referral centre with a particular focus on swallowing toxicity.

methodsA cross-sectional retrospective and prospective evaluation was undertaken at a single tertiary referral centre. Patient medical records were reviewed retrospectively over a 3-month period to ascertain if routine surveillance consultations addressed any potential swallowing-related toxicity. Unmet needs were prospectively measured using the Patients Concerns Inventory for Head and Neck Cancer Post Treatment (PCI-HaNC-PT).

resultsThe retrospective sample included 52 patients where data was collected via medical note review. There was documented evidence of surveillance for swallowing-related toxicity in 13% (n = 7) of cases. Of the seven patients questioned about any potential swallowing-related toxicity, six reported difficulties with only one referred for formal assessment to speech and language therapy (SLT). The prospective sample included 74 individuals. On screening for potential unmet needs using the PCI-HaNC-PT, 78% (n = 58) reported at least one unmet QoL concern. The most commonly reported concerns included dry mouth 41% (n = 30), difficulty swallowing 27% (n = 20), fear of recurrence 20% (n = 15), head and neck pain 18% (n = 13) and difficulties chewing 16% (n = 12).

conclusionThese data demonstrate that swallowing toxicity following treatment was not routinely elicited during surveillance appointments. Patients presented with QoL-related concerns in the post treatment setting with eating and drinking difficulties being most prevalent. More detailed consideration is needed to understand how patients' needs can be better identified to enhance and improve ongoing QoL during the surveillance period following treatment. IMPLICATIONS FOR CANCER SURVIVORS: • Head and neck cancer treatment causes significant long-term changes to many patients' functional outcomes including eating and drinking. • Within this evaluation routine surveillance models did not provide sufficient assessment of patients' ongoing QoL concerns following treatment end. • These data demonstrate swallowing toxicity following treatment was not routinely elicited during surveillance appointments. • The utilisation of holistic prompts list such as PCI-HaNC-PT can provide opportunities for patients to share their experiences and help shape a personalised response from treatment care teams.