Abstract
AimTo examine the burden of out-of-pocket household expenditures and time spent on care by families responsible for children with Down Syndrome (DS).MethodsA cross-sectional analysis was performed after surveying families of children with DS. The children all received medical care at the Hospital Infantil de México Federico Gomez (HIMFG), a National Institute of Health. Data were collected on out-of-pocket household expenditures for the medical care of these children. The percentage of such expenditure was calculated in relation to available household expenditure (after subtracting the cost of food/housing), and the percentage of households with catastrophic expenditure. Finally, the time spent on the care of the child was assessed.ResultsThe socioeconomic analysis showed that 67% of the households with children with DS who received medical care in the HIMFG were within the lower four deciles (I-IV) of expenses, indicating a limited ability to pay for medical services. Yearly out-of-pocket expenditures for a child with DS represented 27% of the available household expenditure, which is equivalent to $464 for the United States dollars (USD). On average, 33% of families with DS children had catastrophic expenses, and 46% of the families had to borrow money to pay for medical expenses. The percentage of catastrophic expenditure was greater for a household with children aged five or older compared with households with younger children. The regression analysis revealed that the age of the child is the most significant factor determining the time spent on care.ConclusionsSome Mexican families of children with DS incur substantial out-of-pocket expenditures, which constitute an economic burden for families of children who received medical care at the HIMFG.
Highlights
Down syndrome (DS), caused by the trisomy of the critical region of chromosome 21 in 21q22 [1], represents the main source of intellectual disability with a genetic origin [2, 3]
Some Mexican families of children with DS incur substantial out-of-pocket expenditures, which constitute an economic burden for families of children who received medical care at the Hospital Infantil de Mexico Federico Gomez (HIMFG)
Catastrophic expenditures occurs if total out-of-pocket expenditures on medical care and transportation were greater than or equal to 30% of the available household expenditures
Summary
Down syndrome (DS), caused by the trisomy of the critical region of chromosome 21 in 21q22 [1], represents the main source of intellectual disability with a genetic origin [2, 3]. In Mexico, estimates for 2007 ranged from 1/650 to 1/879 newborns [5]. One year later, it had declined in the country as a whole to 3.73/10,000 births [6], and in Mexico City it had fallen to 4.63 or 1/2,167 in the same period. Patients with DS require personalized follow-up and health care services. They present multiple comorbidities including congenital heart disease and other gastrointestinal disorders, often requiring surgery during the first few years of life that can result in medical costs [7]. Children with DS require non-medical services and support associated with their emotional and psychomotor development [11, 12]
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