The late paid price: The lived experience of late radiation associated dysphagia.

Purpose: Late radiation-associated dysphagia is a rare side effect of radiation treatment for head and neck cancer. Arising over five years after treatment, it may profoundly impact survivors' health and quality of life. This study sought to gain insight into the lived experience of late radiation associated dysphagia.

Method: This qualitative study utilised semi-structured phone interviews. Research assistants completed transcription using a consensus process with the first author for unclear speech segments. A patient partner was consulted at all study stages. Participants were purposively sampled from a single Canadian province, and an inductive thematic analysis was employed.

Result: Twelve participants were enrolled between 9-33 years post cancer diagnosis. Four main themes were identified: a) Glad to be alive, but…, b) eating isn't the same, c) it changes everything, and d) a lot of gaps.

Conclusion: We identified impacts beyond physiological changes. Social connection, daily logistics and eating related quality of life challenges were prevalent. Results highlight gaps in person-centred decision making and access to health care professionals who understand and recognise this complex condition. We recommend improved patient education, provider awareness, as well as monitoring and treatment for late effects.