Hemoglobinopathy
Health Status and Healthcare Use in a National Sample of Children with Sickle Cell Disease

https://doi.org/10.1016/j.amepre.2010.01.003Get rights and content

Background

There is a paucity of population-based data describing health status and use of health services among children with sickle cell disease (SCD).

Purpose

This study provides estimates of co-occurring conditions, health impact and utilization, and barriers to care for a national sample of children with SCD.

Methods

Data were derived from the 1997–2005 National Health Interview Survey Child Sample Core. The study included 192 children aged 0–17 years with SCD whose race was reported as black or African-American, and 19,335 children without SCD of the same age and race. Parents or other knowledgeable adults reported on medical and developmental conditions, health status, and healthcare use and access.

Results

After adjusting for demographic characteristics, black children with SCD had higher odds of frequent severe headaches or migraines, intellectual disabilities, regular use of prescription medication, and fair or poor health status compared with black children without SCD. While healthcare and special education services use were generally higher for black children with SCD than for black children in the general population, those with SCD also had higher odds of reporting delays in accessing health care.

Conclusions

The health burden for children with SCD and their families is profound and may be exacerbated by barriers to accessing comprehensive medical care. Additional study of the extent of unmet needs for U.S. children with SCD is warranted.

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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