Health status, functional limitations, and health care utilization among US children with sickle cell disease, 1998-2005

Objective: This analysis provides nationally representative estimates of health-related needs, limitations, and health care use among non-Hispanic black children with and without sickle cell disease.

Methods: The data were derived from the 1998-2005 National Health Interview Surveys and were restricted to non-Hispanic black children less than 18 years of age. Parents or other knowledgeable adults reported on sickle cell disease, co-occurring developmental conditions, health and functional status, and health care utilization. Bivariate and multivariate analyses were conducted; all estimates were weighted to reflect the noninstitutionalized population of non-Hispanic black children nationally.

Results: After adjusting for demographic factors, non-Hispanic black children with sickle cell disease had higher odds of mental retardation, mobility limitations, needing help with personal care, regular prescription medication use and poor health status compared with non-Hispanic black children without sickle cell disease. Non-Hispanic black children with sickle cell disease were 2 to 3 times more likely than children without to have seen a medical specialist, mental health professional, and therapist/allied health professional and to have had more than 9 office visits and more than one emergency department visit in the past 12 months.

Conclusions: These findings underscore the health and functional impact of sickle cell disease in a population of US children. Such information can be used to better inform public health planning, program development, and resource allocation for children with sickle cell disease.