Patients’ experience of recurrent/metastatic head and neck squamous cell carcinoma and their perspective on the EORTC QLQ-C30 and QLQ-H&N35 questionnaires: a qualitative study

BACKGROUND: Head and neck squamous cell carcinoma (HNSCC) and its associated treatments may affect all aspects of patients' health-related quality of life (HRQoL). Although the EORTC QLQ-H patient quotes were coded to identify concepts and themes to develop a conceptual model of HNSCC experience. RESULTS: = 8/13, 61%). All side effects negatively impacted patients' HRQoL. Patients generally found the QLQ-C30 and QLQ H excessive mucous production and neuropathic symptoms were among the suggested additions. CONCLUSIONS: HNSCC and its diverse symptoms and treatments have a negative impact on many aspects of patients' lives. A number of reported symptoms including difficulty speaking and swallowing, localised pain and fatigue may be important for treatment benefit evaluation in clinical trials from a patient perspective. The QLQ-C30 and QLQ-H&N35 are generally relevant and suitable for use in clinical trials. However, some items could be amended/added to ensure conceptual comprehensiveness of these measures.