LAUSR

This study aims to better understand the lived experience of head and neck cancer survivors who suffer from radiation induced fibrosis (RIF). Recording the lived experience of RIF will better inform us on the use of autologous fat grafting (AFG) as a therapy. A focus group (n=5, M=3, F=2) was facilitated, centred around the impact of RIF on head/neck function, appearance, emotional and psychological wellbeing, and socio-economic aspects of participant's lives. Participants discussed the wider issues of cancer survivorship, patient education, and healthcare service provision. Coding and thematic analysis of the verbatim audio transcript was undertaken. We compared this data to currently available patient reported outcome measures, notably the University of Washington Quality of Life Questionnaire (UW-QOL) and modified our survey to encompass these experiences. Eight main themes were highlighted, listed in order of importance to patients; 1-Physical head and neck functions 2-Relationship with healthcare providers 3-Socioeconomic aspects of life 4-Appearance 5-Psychological and emotional wellbeing 6-Freedom and independence 7-External/Personal knowledge and sources of information for patients 8-Pain. Quantitative validation of our modified questionnaire, based on these results, and distribution to a wider patient cohort has further demonstrated the severity of symptoms experienced by these cancer survivors. There is a clear unmet need for long-term support and novel treatments for this patient group. Future research should focus on treatments such as AFG, which could improve functional outcomes, appearance and emotional wellbeing in RIF patients.