Financial burden after brain tumor diagnosis: The cost of disease for patients and caregivers

Despite established global health care systems in high-income and middle-income Countries, the financial burden of medical costs of diseases can be substantial for persons suffering from illnesses, and especially for cancer patients. Global healthcare costs represent an important economic issue, with up to 18% of gross domestic product spent on health care in the United States, 12.4% in Switzerland, and 9.6% in Australia in 2016.¹

Additional costs paid by the affected persons and possibly their families, referred as out-of-pocket costs, are nonreimbursed expenses adding to the total medical bills and often remain unnoticed. They can comprise co-payments for prescribed medications, deductibles to hospital stays and treatments, but also supportive therapies, transportations, and support with homecare or childcare. Those out-of-pocket expenses however can lead to significant financial strains for patients and increases vulnerability and health care equity gaps. In the United States, health-related out-of-pocket expenses increased from $24 billion to $433 billion in the past 50 years.² For Australian cancer patients, recent studies reported on out-of-pocket costs greater than $1000 per year, with significantly higher expenses when compared with noncancer patients, even adding up to $10 000 over a period of 2 years.³ Consecutively, families of cancer patients have to make financial adjustments and face financial concerns, and all of that whilst adapting to a new and emotionally stressful situation of coping with a life-threatening disease.

Patients with a primary malignant brain tumor and their families face the duality of not only suffering from a life-limiting cancer disease but also from neurological impairment, which inevitably increases the burden related to the diagnosis. The rapid disease trajectory and the specific neurocognitive and motor symptoms usually make it difficult to keep an employment and an income already at early stages of the disease. This eventually leads to financial repercussions and puts emotional strains on affected persons and their loved ones.⁴ Meanwhile, additional expenses arise for patients and the families, and most of them are not fully described, precluding the possibility to improve and provide support for the affected persons.

In this issue of Neuro-Oncology Practice, Newton and colleagues⁵ have analyzed the complex system of out-of-pocket costs specifically for persons with high-grade glioma and for their informal caregiver in Australia. They report on the expenses from 69 patient–caregiver dyads over a period of 6 months and demonstrate the high variability of costs that families of persons affected from a high-grade glioma experience following diagnosis. Data were collected at baseline and subsequently monthly, within a phase III randomized control trial (CARE-IS), for 6 months. Data collection comprised health care professional attendance for both patient and carer, radiology and pathology services, palliative, hospice and nursing home care, childcare, as well as transport and parking costs.

An important message of the study is that, despite living in a high-income country with a good health insurance program and defined reimbursement strategies for most diagnosis-related expenses, out-of-pocket costs were still substantial with a median additional expense of 535$ per month, throughout all assessed demographics. This underlines that even affordable healthcare and access to treatment does not prevent financial burden in families of persons suffering from a brain tumor. Highest costs arose from direct medical costs, as additional costs for health service use and patient medication. However, direct nonmedical costs, including childcare needs related to the disease, were reported as well, partially hitting 30% of monthly total costs, especially at baseline. This is a relevant point, considering that lack of affordable childcare in those diagnosed with cancer and their families does not only increase financial burden caused by missing workdays (and accordingly income) but also affects treatment continuity of the patients, resulting in rescheduling appointments or even missing some.⁶

A second important message relates to the costs that the families and informal caregiver reported. Caregiving usually translates into providing unpaid care work and experiencing indirect costs, as loss of income due to the caring task. The additional unpaid workload to care for a cancer patient has been shown to range from few hours per week up to 17 hours per day and to be associated with a cost equivalent of up to $35 000 per year in advanced cancer,^7,8excluding loss of income, which also adds to financial burden of caregiving. However, while these indirect costs were not in the focus of this study, the authors confirmed that additional out-of-pocket expenses arose not only for patients but also for those supporting brain tumor patients. Carers reported expenses for health service use for themselves that persisted over the entire observational period. These included visits to their general practitioner, but also counselors and cancer nurse coordinators, in relation to the brain tumor disease of their loved one. Self-financed prescription drugs accounted for additional costs up to 100$ a month, a fact that has been reported in caregivers of other cancer patients as well.⁹

Lastly, while medical care cost at the end of life has been an area of interest lately, the authors specifically focus on expenses in the first months after diagnosis, when affected persons and their families are only just in the process of adapting. This underlines the need to offer social support early in the course of the disease, to ease the burden on patients and caregivers.

Overall, the authors provided an important overview on the multitude of out-of-pocket costs in persons with brain tumors, focusing on the first 6 months postdiagnosis. With increasing healthcare costs even in high and middle-income countries, it is of utmost importance to document and understand the additional out-of-pocket expenses from patients and from informal caregivers as well.