The diagnosis of a high-grade glioma (HGG) comes with understandable distress for patients, their carers and families but also with an unexpected and significant financial burden.
An Australian study has found the out-of-pocket costs, especially for health services and medications, peaks in the first two months after diagnosis but continues for the disease trajectory.
The study, published in Neuro-Oncology Practice [link here], reports on costs incurred by participants in the usual care arm of the CARE-IS trial – a RCT testing a supportive educational intervention for carers of patients with HGG.
Primary and secondary outcomes of the RCT have been previously reported [link here].
The out-of-pocket costs study involved a baseline then monthly survey of carers for costs associated with patient and carer health professional attendances, patient and carer medications, patient radiology services, patient pathology for which there was a co-payment, palliative care, hospice and residential care services, transport and parking, and other agency assistance.
Of the 90 carer-patient dyads in the control arm of the CARE-IS trial, 69 completed at least one cost survey. Carers had an average age of 57 years and were mostly women (80%) caring for a spouse. Most patient care (70%) was delivered at a public hospital.
The study found on entry into the study, the median total monthly costs for patient-carer dyads were $535 (range $170 – $930) with the highest median costs for childcare ($466) and imaging ($420).
Total costs reported for carer-patient dyads after baseline ranged from $314 at 2 months to $198 at 6 months.
Cost categories that contributed the most across 6 months were patient health service use (46%) and childcare (29%) at baseline; patient travel (31%) and patient medication (28%) at month one; patient medication (22%) and patient health service use (25%) at month 2; patient medication (27%) and health service use (24%) at month 3; patient medication (42%) and patient travel (21%) at month 4; patient medication (31%) and patient travel (30%) at month 5, and patient medication (69%) and health service use (16%) at month 6.
The investigators, including Professor Georgia Halkett from Curtin University, said the imaging costs represent high costs paid by a small portion of participants.
“The available data does not indicate whether these scans were routine, or in addition to usual care; so we are unable to discern if the high costs are due to imaging requested outside of usual care or if these are large gap fees from service providers,” they said.
“Furthermore, the available data does not include if participants were able to comfortably afford these imaging costs….”
Regarding childcare, they said the high costs for families with children warranted further research.
Of particular interest was that carers self-reported “persisting health-related costs” of their own – demonstrating they were juggling their own needs with those of the patient.
“Although the Australian public health-care system has mechanisms in place to safeguard families against high medical costs it is evident that medication and health service use still incur substantial out-of-pocket costs to the people with HGG and their carers.”
Unsubsidised treatment options for HGH during the study period included bevacizumab (prior to 2019), lomustine, and procarbazine, they said.
The study found no demographic factors predicted high out-of-pocket costs at baseline.
“This is in contrast to studies conducted in other cancer patient populations that found factors such as younger age, being a First Nations person, rurality, household income, employment status, and private health insurance status to be associated with greater out-of-pocket costs.”