Out-of-pocket costs for patients diagnosed with high-grade glioma and their carers.

Background: This study aimed to describe the out-of-pocket costs incurred by patients diagnosed with high-grade glioma (HGG) and their carers in the standard care arm of the Care-IS trial in the 6 to 8 months following their diagnosis. Methods: Carers completed monthly cost surveys detailing the out-of-pocket costs incurred by patients and carers over a 6-month period. Seventy carers reported out-of-pocket costs at baseline (within 2 months following patient diagnosis), and a maximum of 50% of participants reported costs in any subsequent month. Costs were adjusted to 2023 AUD and reported as medians with an interquartile range. Demographic factors were assessed to determine if any were significantly associated with being in the first or fourth quartile of total out-of-pocket costs at baseline. Results: Median monthly costs for patient-carer dyads were highest at baseline ($535[IQR:$170-$930]), and 2 months post-recruitment ($314 [IQR:$150-$772]). The largest contributors to patient-carer costs were patient health service use and patient medications. Patient and carer health service use and medication costs varied over time. The median health service use and medication out-of-pocket costs for patients and carers were mostly below $100 per month; however, there was a large variance in the upper 75th percentile for these cost categories. No factors were significantly associated with higher baseline out-of-pocket costs. Conclusions: A HGG diagnosis has a significant and sustained financial impact on people who are diagnosed and their carers. Patients experience significant additional costs relating to their diagnosis and travel to receive care, and their carers also continue to experience sustained costs whilst managing the additional tasks associated with informal caregiving.