Background and Context:
The cost of managing children with cancer can be substantial, and in the absence of insurance and/or social support can lead to abandonment of treatment.
This pilot study looks at the feasibility of assessing out of pocket (OOP) expenditures incurred by parents/carers and non-governmental organisations (NGOs) in treating children with cancer in Indian government hospitals.
Parent/caregivers of 11 children with cancer treated at AIIMS (Department of Oncology and Pediatrics) and Safdarjung Hospital (Department of Pediatrics) were interviewed to assess OOP costs for 14 weeks (two weeks prior to diagnosis and 12 weeks subsequent to diagnosis)
Costs and returns:
The age range of the children was 3-19 years (median 6 years). 73% were not resident in Delhi. in 54% of the families the main working member was an unskilled worker and at least one parent was illiterate or had had no schooling.
The median OOP expenses were Rs 3124 (31£) and ranged from Rs 2532-7272 (25-73£). Median direct costs were 46% (range 7-87%) and median indirect costs were 54% (range 13-93%). Major direct costs preceding diagnosis were on investigations and following diagnosis were on chemotherapy and supportive care. Major indirect costs preceding diagnosis were on travel and following diagnosis on food.
The NGOs provided support in direct costs to all 11 families (range 1% to 93%) and in indirect costs to 4 families (range 33% to 87%).
All families had to use up their savings, borrowed money, gone into debt and had sold assets.
Outcomes/What was learned:
Such a study is feasible. It shows that despite "free treatment" children with cancer incur significant OOP expenses in Indian government hospitals which have significant socio-economic impacts. NGOs provide valuable assistance.