Aims: Survivors of childhood brain cancer (CBCS) need ongoing care to for the management of chronic late effects. However, healthcare costs can be prohibitive, leading to lower adherence to health recommendations, and cause financial strain and psychological stress. Engage Brain, our CBCS intervention, offered multidisciplinary case reviews and personalized health recommendations to CBCSs. This study aimed to evaluate the out-of-pocket expenses required to follow these recommendations.
Method: We used the Australian Medicare cost calculator to estimate the out-of-pocket costs for adhering to health recommendations. Recommendations were assigned minimum and maximum costs to reflect both public/bulk billing and private/gap-payment scenarios. We calculated the average costs for adherence, adherence rates at six-month follow-up, and compared care costs based on factors like age, tumor grade, treatment site, and type of treatment received.
Results: Fifty-nine CBCSs participated (50% male, average age=22 years; average time since diagnosis=15 years). The mean total cost per survivor was $479 (range=$0-1128, SD=$247) for the minimum-cost scenario and $1,407 (range=$284-5603, SD=$1193) for the maximum-cost scenario. Dentistry (24%), mental health (21%), and neuropsychology (18%) services comprised the largest share of costs. Survivors who underwent chemotherapy (t=-3.207, p<0.002) or radiotherapy (t=-2.256, p<0.028) faced significantly higher minimum total costs compared to those who did not. On average, survivors adhered to 40% of recommendations (range=0-81%, SD=19%), with an average expenditure of $142 (range=$0-543, SD=$160) and $338 (range=$0-1043, SD=$259), in the minimum and maximum-cost scenario, respectively.
Conclusions: Services not covered by Medicare, limited bulk-billing, and long public waiting lists are substantial contributors to increased costs, therefore presenting barriers to care. These are crucial targets to address to reduce financial toxicity and improve adherence to survivorship care.