A pilot study to determine out‐of‐pocket expenditures by families of children being treated for cancer at public hospitals in New Delhi, India

Background: The allocation of family time and other scarce resources is essential to enable the treatment of children with cancer. Empirical evidence, although scant, derived from predominantly high income countries, indicates that families incur significant variable costs throughout cancer treatment impacting their lifestyle substantially. In Canada, Tsimicalis et al determined that families' 3-month expenses related to their child's new cancer diagnosis, including their direct (out-of-pocket) and time costs, were 37% of their annual, after-tax income. Yet, the out-of-pocket health expenditures may be more catastrophic in resource-poor countries including India, where parents often have to abandon their child's cancer treatment to ensure the financial sustainability of the family. Poor prognosis, prolonged travel time to treatment centers, and parents' low socioeconomic and educational status remain contributing factors to treatment abandonment. The precise magnitude of costs remains largely unknown in these countries where burden of costs can be catastrophic. When this pilot was conducted, there were no data from India on out-of-pocket health expenditures in childhood cancer. Subsequently, two studies focusing childhood acute lymphoblastic leukemia (ALL) have been published, which have highlighted the magnitude of the expenditure, much of which is on nonmedical expenses and the significant impact it has on the families. Objectives: Thus, the objective of this pilot study was to determine the feasibility of assessing the direct costs (ie, out-of-pocket expenses) incurred by families of children being treated for cancer at public hospitals in India during (q) 2 weeks prior to the diagnosis and (b) the 12 weeks following the diagnosis. Direct costs are defined as the actual money expended related to a illness. These costs are associated with the use of health care in the diagnosis, treatment, continuing care, rehabilitation, and palliative care of patients as well as nonhealthcare expenditures occasioned by the illness. As the focus was on the out-of-pocket costs of the caregiver, we did not ascertain any costs to the public hospital in delivering the care, which may include professional fees, in-house investigations, infrastructure, or food, drugs supplies, or equipment provided from the hospital. We also sought to look at feasibility of measuring indirect costs (mainly the time associated with providing childcare to the child with cancer, followed by the siblings) as well as the impact of these direct and indirect costs.