RESUMO
OBJECTIVES: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China. DESIGN: A single-site, cross-sectional survey of primary caregiver of a child with ALL was performed. SETTING AND PARTICIPANTS: We analysed the total costs incurred on the completion of the first three-phase treatment (induction, consolidation and intensification), which requires intensive hospitalisation. Eligible patients were (1) diagnosed with ALL between 2010 and 2012 at Shanghai Children's Medical Center (SCMC), (2) aged 0-14 years at diagnosis and (3) completed the first three-phase treatment at SCMC. The data were collected between October 2014 and December 2014. OUTCOME MEASURES: We decomposed the total costs into three categories: (1) direct medical costs, which were further divided into outpatient and inpatient costs; (2) direct non-medical costs, which referred to expenses incurred in relation to the illness; and (3) indirect costs due to productivity loss. RESULTS: A total of 161 patients were included in the study. Direct medical costs accounted for about 51.7% of the overall costs, and the rest of 48.3% of the total costs were attributed to direct non-medical costs and indirect costs. Regarding families with different household registration type (rural vs urban), the total costs were significantly different between the two groups (US$36 125 vs US$25 593; p=0.021). Specifically, urban families incurred significantly larger indirect costs than rural families (US$12 343 vs US$4157; p=0.018). Although the direct non-medical costs were not significantly different, urban families spent more money on hygiene cleaning products and auxiliary treatment equipment (p=0.041) and gifts and treats (p=0.034) than rural families. CONCLUSIONS: The financial burden faced by the Chinese families with a child with ALL was tremendous, and the distributions of costs among the three categories were different between urban and rural families.