Background/Aim: Childhood cancer late effects necessitate long-term survivorship care for the prevention and treatment of chronic mental and physical health conditions. To understand the financial toxicity of survivorship care, this study aimed to calculate the out-of-pocket costs required to adhere to personalised health recommendations included in disengaged survivors (no comprehensive cancer care in >2-years) new survivorship care plan, as part of the ‘Engage Brain’ program.
Method: Engage Brain is a distance-delivered survivorship program involving online nurse consultations and a remote multidisciplinary team meeting to determine personalised survivorship recommendations for medical and psychosocial care. The costs of each recommendation were determined through the Australian Government Medical Costs Finder and in consultation with healthcare professionals. Total costs were calculated as i) a minimum-cost scenario, which excluded costs that could be bulk-billed, and ii) a maximum-cost scenario, which included typical ‘gap’ payments for private healthcare. Descriptive statistics were performed for the total out-of-pocket costs for each scenario and independent samples t-tests were conducted to compare the mean costs by survivors’ age (≤18 years or >18 years) and cancer grade (low-grade glioma or high-grade brain cancer).
Results: Recommendations for 49 paediatric brain cancer survivors were assessed (mean age=22.82 years, mean time since diagnosis=15.49 years, 55% female). The mean minimum-cost scenario was $454.53 per patient (range = $0-$1,082), and the mean maximum-cost scenario was $1,420 (range=$242.75-$5,413.75). The highest costs were incurred by psychology, dentistry, and neuropsychology. Child survivors had significantly higher maximum costs than adult survivors (p<0.03). No significant difference was observed in costs for low-grade gliomas compared to high-grade brain cancers.
Discussion/Conclusion: Survivors can face high healthcare costs in survivorship, which may also cause psychological hardships and impact adherence to healthcare recommendations. These costs may be exacerbated when re-engaging in care after a long period of disengagement. While the general population also incurs regular healthcare costs, childhood cancer survivors often experience employment and educational difficulties, increasing risk for financial hardship and limiting affordability. Healthcare practitioners play an integral role in co-ordinating care to provide lower-cost pathways to survivors. However, services not covered by Medicare, with long public waiting lists, and with limited bulkbilling remain major contributors to the high costs of ongoing care. These remain important targets for improving healthcare accessibility for survivors and to reduce delaying or disengagement from recommended survivorship care.