Out Of Pocket Costs For Pediatric Stroke Care

Objective: Direct hospital costs have been reported for children who have had stroke, and are similar to direct costs for adults. There has been no information regarding the indirect costs families encounter that are not covered by insurance (i.e. out-of-pocket) costs. Knowing the magnitude of these costs will give a more complete understanding of the economic impact of childhood stroke. This study describes out-of-pocket costs families paid in the first year after a child’s ischemic stroke. Methods: 22 of 70 possible subjects were prospectively recruited at 4 centers in the US and Canada in 2008 and 2009 for the “Validation of the Pediatric NIH Stroke Scale” study, and their out-of-pocket costs were tracked for 1 year. Parents reported expenses every three months, including wages lost for hours they did not work, non-reimbursed costs for medical visits or other health care, and mileage. They provided estimates of annual income. We calculated total out-of-pocket costs in US dollars. We also reported costs as a proportion of annual income to account for regional differences in income. Results: Total median out-of-pocket cost for one year was $4354 (range 0-$28,666). Wage earners in two families lost their jobs. Out-of-pocket costs were greatest in the first three months after the incident stroke, with the largest proportion due to lost wages, followed by non-reimbursed healthcare, lodging, and transportation. Lost wages remained high in the second quarter, but fell by the third and fourth quarters. Healthcare costs remained stable for the 4 quarters. For the entire year median out-of-pocket costs represented 6.8% (range 0-81.9%) of annual income. Conclusions: Out-of-pocket expenses are significant for families following a child’s ischemic stroke. These median out-of-pocket expenses of $4300 are of particular concern given that the median American household has cash savings of only $3,860. These results can be combined with previous reports of childhood stroke costs to model the overall costs of childhood stroke. Childhood stroke creates an under-recognized cost to society because of decreased parental productivity due to lost hours from work.