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

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.