Assessment of quality of life in individual patients with head and neck cancer: opinions and preferences of patients and clinicians

Head and neck cancer patients face considerable challenges as a result of their diagnosis and therapy. Psychosocial aspects are accepted as critically important in their care. Our hypothesis was that ‘carefully designed and structured questionnaires can be used to improve the quality of life of head and neck cancer patients’. This thesis reports the development of and findings from a series of studies considering the opinions and preferences of patients and clinicians about questionnaires and the process of care, supported by interviews and analysis of taped consultations. This work provided a detailed insight into aspects of head and neck cancer care from all perspectives. In summary, my main conclusions were: · The current practice of relying on consultations alone to manage the care of cancer patients does not ensure that all concerns are identified. This is particularly true for emotional and psychosocial issues. · There are substantial differences in patient characteristics, therapeutic burden and status between thyroid patients and other H&N cancer patients. A specific QoL module should be developed to meet the needs of thyroid patients. · Patients were not able to choose a questionnaire with any consistency. · Patients and clinicians had clear and cogent views about the process of care, consultations and questionnaires which provided invaluable insight into the needs of this patient population. · No current questionnaire is ideal for individual assessment but, from this study a combination of the EORTC QLQ C30 and H&N modules and HADS is recommended. · The main area of omission from current assessments is ‘fear of recurrence’. This is common and needs to be addressed in care for H&N and also Thyroid cancer patients. The results have provided an evidence base for future work in this field building towards a model of care which encompasses all aspects of patient needs.