Financial burden of therapy in families with a child with acute lymphoblastic leukemia: report from north India.
BACKGROUND
In a low-income country, a child with cancer has severe financial implications for the family. Invariably, patients have to self-finance their therapy. "Out-of-pocket" expenses tend to be high. Also, parents may face loss of job or business resulting in loss of income. Our objective was to assess the financial burden in families with a child with cancer.


METHODS
The cost to a family with a child with acute lymphoblastic leukemia (ALL) during the first month of therapy was analyzed. Fifty families were given a cost diary in which details of expenditure (direct medical costs, living costs, transport cost) and lost income/employment were recorded.


RESULTS
The families evaluated came from a distance of 260 ± 218 km from hospital. Most families belonged to upper lower category (62%). The medical expenditure amounted to US dollar (USD) 524 (interquartile range (IQR) 395-777). Nonmedical expenditure was USD 207 (IQR 142-293), the maximum expenditure being on food. The monthly expenses were 7.2 times the monthly per capita income of India which was Indian rupee (INR) 5729 (USD 97) in 2012-2013. Thirty-nine families got financial help (USD 800-3225) from various sources, within 6 months of application. Of the families, 72% families suffered loss of income, 34% fathers lost their jobs.


CONCLUSIONS
Families spend up to seven times their monthly income over a period of 1 month on an unforeseen illness. Despite financial aid from various sources, nonmedical costs amount to nearly 2.5 times the average per capita income. Universal health insurance is the need of the hour.
Pediatric Hematology Oncology Unit, Department of Pediatrics, Advanced Pediatric Centre, Postgraduate Institute of Medical Education & Research, Chandigarh, 160012, India.
Nishantadeb
N
Ghatak
Pediatric Hematology Oncology Unit, Department of Pediatrics, Advanced Pediatric Centre, Postgraduate Institute of Medical Education & Research, Chandigarh, 160012, India. trehanamita@hotmail.com.
Amita
A
Trehan
Pediatric Hematology Oncology Unit, Department of Pediatrics, Advanced Pediatric Centre, Postgraduate Institute of Medical Education & Research, Chandigarh, 160012, India.
Deepak
D
Bansal
D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007194:India; D007223:Infant; D008297:Male; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000191:economics*
ALL; Medical expenses; Nonmedical expenses; Out-of-pocket expenses; Per capita income