SOCIOECONOMICS

SOCIAL AND ECONOMIC IMPLICATIONS OF CHILDHOOD STROKE

A review of recent studies shows that there is little information about how childhood stroke affects health systems and families. Similarly, there is little data available about the costs of childhood stroke. In particular, there is little knowledge about indirect costs – for example, payments for care or other social support that are not part of direct medical treatment. Most existing studies only look at short-term costs for the health system during the first year after the stroke. Because of this, we know little about the overall economic burden of childhood stroke in Europe.

The BUILD CARE project studies the costs of care in Austria, Belgium, and Germany. It examines how families are affected financially and personally when their child has had a stroke. The project focuses on indirect costs, such as:

loss of income,
time parents spend caring for their child,
additional household expenses.

It also looks at how care responsibilities affect family life and finances, and what changes in the home environment are needed to better support children in need of care.

Existing knowledge about economic implications of childhood stroke (Review)
As a first step, we conducted a systematic analysis of the existing literature (the full document can be downloaded) on the costs of paediatric stroke to identify knowledge gaps regarding the economic burden on health systems, society and families affected by childhood stroke. Most studies focus on the US American context, with only one exception from Taiwan. Here is what we found out about health system expenditures:

Average initial hospitalization costs for pediatric stroke range from about €36,800–€41,400 with ischemic stroke averaging around €36,800 and hemorrhagic stroke around €75,400. Costs are significantly higher for patients receiving thrombolysis or experiencing complications, sometimes exceeding €147,000.

Median first-year costs typically fall between €55,000–€74,000, with hemorrhagic strokes generally costing nearly twice as much as ischemic strokes. Patients with complications can incur expenses of up to €205,700 reflecting the heavy economic burden of complex cases.

Inpatient costs are higher for hemorrhagic stroke (≈€45,900) than for ischemic stroke (≈€19,900), while outpatient costs are similar between types. Emergency care also tends to be more expensive for hemorrhagic stroke patients.

Higher costs in hemorrhagic stroke stem mainly from greater spending on nursing, pharmacy, and supplies. Imaging, laboratory, and clinical service costs are relatively similar between ischemic and hemorrhagic stroke cases.

Most long-term expenses occur during the first year after pediatric stroke, with costs declining in the following years. No studies have reported indirect costs such as caregiver burden, educational support, or social services, which likely leads to an underestimation of the total economic impact.

Only one study reports on family’s expenses: Out-of-pocket expenses were highest in the first quarter and declined in the remaining nine months. Initially, the most significant cost drivers included lost wages, transport costs and uncovered healthcare costs. Although income losses declined after the first quarter, transport costs remained significant throughout the year. The median total family cost for the year was €4,930 (mean: €7,490).
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Financial implications for health care systems (hospitalization data analysis)
In order to estimate the financial implications for different health care systems we analysed hospitalization data from the participating countries for stroke patients until the age of 15. Comparable cost data was only available for Austria and Belgium.

Between 2002 and 2022, a total of 1,949 hospital stays with a diagnosis of cerebral infarction (ICD-10 code I63) were recorded in Austria (AT), and 13,647 cases in Germany (DE).

The incidence rate of Hospital stays due to an I63 diagnosis ranged between 1 and 3 cases per 100,000 inhabitants per year

Austria consistently recorded higher (twice as many as DE and three times as many as BE) annual hospitalization rates per 100,000 inhabitants for I63 diagnoses.

When examining the length of hospital stay (LOS) for children diagnosed with cerebral infarction, notable differences emerge between Austria (AT), Belgium (BE), and Germany (DE). On average, the LOS for I63 diagnoses was significantly longer in Austria (17 days) compared to Belgium (6 days) and Germany (11 days).

Mean admission costs (between 2012 -2022) varied between countries and age group. Austria reported lower mean cost bounds (€4,000 -€16,800) then Belgium (€3,800 – €25,800) for all ICD 10 (I60-I69).

Mean costs per admission were higher for children aged between 10 and 14 years compared to younger children.

Financial implications for affected families
We designed an online questionnaire that focused on the household economics of families with children affected by stroke. This questionnaire was developed to examine the family-incurred costs related to health and long-term care, as well as forgone income from labour in the three participating countries. Based on the answers to our survey we found that:

main caregivers are mostly women

main caregivers reduce their working hours because of their childs diagnosis by 17 hours per week on average

this leads to a median loss of income of €10,800 per year

additional household and care hours for their child span from 0 to over 100 hours per week, depending on the individual diagnosis.

Building on the results of this questionnaire we conducted a micro-costing exercise for the Build Care personas developed withing this project. These case vignettes are based on the persona’s stroke characteristics and family history. Additional economic data derives from literature and secondary data analysis. It should be noted that the case vignettes do not provide an exhaustive overview of all costs incurred by families. They are rather meant to showcase a selection of the most common expenditures for affected families in order to give an understanding of the possible financial burden.