Aim: Optimal cancer care includes informing patients of the financial implications of treatment. This study explored awareness and the broad impact of costs associated with cancer care.
Method: Seven focus groups (four metropolitan, 3 regional) and three telephone interviews with cancer survivors (n=31) and two focus groups (one metropolitan) and one interview with carers of cancer patients (n=8). Participants had a mix of cancer diagnoses and treatment pathways which provided opportunity for a range of views, consensus or inconsistencies to be explored. Transcripts were analysed for common themes.
Results: Five major themes were identified across all groups, with illustrative quotes provided.
1) Communication: lack of discussion and stigma associated with asking about costs “You cry poor, and it’s awful”
2) Understanding costs: inconsistencies in costs associated with procedures or services “Sometimes, it’s free, but there’s no rhyme or reason” leading to perceptions of inequity and luck.
3) Public and private pathways: being directed into private health system based on insurance status rather than informed decisions “everybody asked “do I have private health cover?””
4) Financial assistance: barriers included lack of information provision. Government welfare payments were difficult to obtain, unsuited to cancer patients’ situations and advice from Centrelink staff was inadequate. “I went to Centrelink and they pointed me to Newstart!” (terminal patient).
5) Impact on other areas of life: Reducing work hours without paid support had substantial impact on financial outcomes and social wellbeing as people reduced costs in other areas “It forces me to be extremely disconnected”.
Carers also noted financial and time costs associated with travel “parking fees are really over the top”.
Conclusions: Findings suggest improvements are needed regarding the timing and content of costs of care discussions to allow people to make informed decisions. Improved pathways to financial support are also needed.