KGRI Grant 2026: Financial Toxicity in Children with Chronic Illness in Japan: Characterizing Its Development, Spillover Pathways, and Conceptual Model

This project aims to establish a novel strategy for enhancing microbial functions using Heat Shock Metabolites (HSMs) without relying on genetic modification.

Financial toxicity (FT) refers to the material hardship, psychological distress, and behavioral changes experienced by patients and their families as a result of the financial burden associated with illness and treatment. These effects may also influence care-seeking behavior and clinical outcomes. The concept was initially studied mainly in oncology, but research has recently expanded to a range of chronic diseases in adults. In pediatric care, evidence has also begun to accumulate internationally, particularly in childhood cancer. A defining feature of pediatric FT is that the financial burden is borne primarily by the family, especially by parents, rather than by the child.

The risk of FT arising from the continuation and accumulation of financial burden during prolonged treatment and care is not limited to cancer and may also apply to other pediatric chronic conditions. However, the frequency of hospital visits, treatment requirements, need for daily medical care or developmental support, and effects on parental employment vary substantially across diseases and stages of illness. Therefore, FT in pediatric chronic illness should not be viewed simply as a matter of medical expenses. It should instead be understood as a process shaped by the interaction among disease characteristics, care provided by family members, effects on employment and household income, and access to social support.

The magnitude and expression of financial burden also depend on each country’s economic conditions and health and social welfare systems. In Japan, public support includes medical expense subsidies, welfare services for children with disabilities, and various cash benefits. However, eligibility criteria and the extent of support differ across programs. Some programs impose income limits or income-based cost sharing, which may exclude families from support even when the child’s care needs remain unchanged. These programs also do not fully compensate for the time families spend on hospital visits, developmental support, and daily care, or for income losses resulting from reduced working hours, leave from work, or job loss. In addition, the programs and benefits available to families change as the child ages, meaning that the family’s financial burden may also change over time.

Against this institutional background, this study will develop a conceptual model describing how FT arises among families of children with chronic conditions in Japan. It will also examine changes in medical expenditures, treatment continuation, care-seeking behavior, and clinical outcomes before and after points at which public support changes because of age or income requirements, using health insurance claims data. The study aims to determine how the design and continuity of public support may affect treatment continuation and child health through changes in the financial burden experienced by families.