Economic impact of advanced pediatric cancer on families

Abstract

Context: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer.

Objectives: To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL).

Methods: Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis.

Results: Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P = 0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL.

Conclusion: The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.

Keywords: Pediatric; disparities; financial; oncology; palliative care; poverty.

Figure 1

Level of family income loss stratified by family Federal Poverty Level (FPL). Adjusted annual family income was divided by the appropriate poverty guideline for household size and multiplied by 100 to achieve percentage of FPL. Comparison of level of family income loss across FPL, P=0.006 by Fisher’s exact test.