Rapid Fire Best of the Best Oral Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Understanding the financial burden of head and neck cancer as experienced by patients and their caregivers: a qualitative study (#93)

Ashleigh R Sharman 1 2 , Justin Smith 3 , Puma Sundaresan 4 5 , Haryana M Dhillon 6 , Poorva Pradhan 1 , Richard De Abreu Lourenco 7 , Jonathan R Clark 1 8 9 , Carsten Palme 1 8 , Rebecca L Venchiarutti 1 2
  1. Head and Neck Surgery, Chris O'Brien Lifehouse, Camperdown, NSW, Australia
  2. Sydney School of Public Health, The University of Sydney, Camperdown, NSW, Australia
  3. Princess Alexandra Hospital, Metro South Health, Woolloongabba, QLD, Australia
  4. Radiation Oncology Network, Western Sydney Local Health District, Sydney, NSW, Australia
  5. Sydney Medical School, The University of Sydney, Camperdown, NSW, Australia
  6. Psycho-Oncology Cooperative Research Group, The University of Sydney, Camperdown, NSW, Australia
  7. Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, NSW, Australia
  8. Central Clinical School, The University of Sydney, Camperdown, NSW, Australia
  9. Royal Prince Alfred Institute of Academic Surgery, Sydney Local Health District, Camperdown, NSW, Australia

Aims

Head and neck cancer (HNC) affects vital functions (speech, swallowing, breathing), increasing long-term health care needs, health service utilisation and inability to work. Consequently, people living with and beyond HNC may experience financial toxicity associated with treatment and survivorship needs. We sought to understand the financial burden of HNC as experienced by patients and their caregivers.

Methods

Participants were recruited through HNC clinics and social media advertisements. Participants were purposively sampled to ensure representation by tumour site, gender, age, and treatment location. Semi-structured interviews were conducted via phone and videoconferencing. Recruitment continued until thematic saturation was achieved across each group. To ensure inclusiveness of participants with verbal communication difficulties, a version of the interview guide was provided as a written questionnaire (n=2). Interviews and completed questionnaires were analysed thematically using NVivo.

Results

Thirty-one participants (22 patients, 9 caregivers) completed interviews (median age 59). The majority were female (61%) and most common tumour site the oral cavity. Financial burden was most frequently reported during the post-operative period due to the nature and length of recovery from HNC, including specialist and allied health appointments, diet modifications, medication, and time off work. Several participants cited ongoing costs associated with dental care, though other aspects of care were prioritised over dental care. Some participants highlighted the importance of social workers and nurses providing information about financial support services. However, for many this was never offered nor discussed by their treating team. All participants encountered out-of-pocket costs related to travel and parking, these costs varied according to distance from the treating centre.

Conclusions

We identified novel aspects of the financial burden of HNC on patients and their caregivers in Australia. Our findings will inform research and policy changes to provide support for survivors of HNC, especially groups at the highest risk of financial toxicity.