HemoglobinopathyHealth Status and Healthcare Use in a National Sample of Children with Sickle Cell Disease
Section snippets
Background
Sickle cell disease (SCD) is a group of autosomal recessive hemoglobinopathies characterized by the presence of sickle hemoglobin in the red blood cells. In the U.S., SCD is one of the most common genetic disorders, affecting approximately 1 in 350 black births and 70,000 Americans, regardless of race.1 Children with SCD are at increased risk for severe morbidity such as hemolytic anemia, splenic dysfunction, pain crises, and bacterial infections.2 Studies of neurologic complications in
Methods
The data used for this study were derived from the NHIS, an annual, multistage probability sample survey of the civilian non-institutionalized population of the U.S.22 From each family selected to be interviewed, one child aged <18 years was randomly selected as the subject for the Sample Child Core questionnaire, which solicits information about children's health status, functional limitations, and access to medical care. A knowledgeable adult in each family, usually a parent or legal
Results
The average annual prevalence of reported SCD among black children aged 0–17 years in the 1997–2005 NHIS was 10.5 per 1000 (SE=0.9, 95% CI=8.8, 12.4), and there was no evidence of a secular trend (data not shown). Black children with SCD had a higher predominance of boys than did those without SCD (Table 1). They were also more likely than their counterparts without SCD to have a household income <100% of the federal poverty level and to receive Medicaid or State Children's Health Insurance
Discussion
The findings presented in this report indicate that, compared with the general population of black children in the U.S., those with SCD are more likely to be affected by certain co-occurring medical and developmental conditions, have concomitant functional limitations, and use more healthcare services. Although black children with SCD had more visits to doctors' offices, medical specialists, and emergency rooms than their counterparts without SCD, their parents reported more problems accessing
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