Patients’ concerns at 10 years following head and neck cancer treatment

Abstract Purpose Patients experience profound functional, psychological and social impacts following head and neck cancer (HNC) diagnosis and treatment. These impacts can generate concerns that patients wish to discuss during post-treatment consultations. Although these concerns have been reported in the first five years after diagnosis, there is little information regarding the concerns reported by survivors in the longer -term. The aim of this cross-sectional study was to report patient concerns 10-years following the diagnosis and treatment of oral cavity, oropharyngeal and laryngeal squamous cell carcinoma. Methods We conducted a descriptive analysis of 10-year follow-up data from the Head and Neck 5000 (HN5000) cohort summarising Patient Concerns Inventory (PCI) responses across clinical subgroups. Results Of the 5,421 participants, 2,513 were alive at 10-years; 1,035 returned the questionnaire, with 661 selecting at least one PCI concern or healthcare professional. The most frequent concerns were dry mouth (43%), swallowing (42%), fear of recurrence (33%), dental health (32%), and chewing (29%). These concerns were present across early and late-stage oral, oropharyngeal, laryngeal sites, though subtle differences were observed. Although all 18 multi-professionals were selected, the two most frequent were dentist (36%) and Speech and Language Therapy (23%). Conclusion A broad range of patient-prioritised concerns were reported by HNC survivors 10 years following treatment. As survival rates in HNC improve there will be an increasing number of patients living with the long-term consequences of cancer and its treatment. Thus, healthcare resources and support need to be focused on addressing those that concern patients most.