A longitudinal examination predicting emergency room use in children with sickle cell disease and their caregivers.

OBJECTIVE To examine in a longitudinal investigation perceptions of disease severity among children and adolescents with sickle cell disease (SCD) and their caregivers and to determine whether perceptions of disease severity and self-reported adjustment would account for a greater percentage of the variance in emergency room (ER) use than objective measures of disease severity. METHODS Participants were 58 African-American children (ages 8-18 years) diagnosed with SCD who were recruited from an outpatient clinic. Children and their caregivers were administered a series of measures designed to assess caregivers' adjustment and perceptions of children's disease severity. Frequency of ER visits was tabulated over an average 4-year period. RESULTS Caregivers' and children's social adjustment accounted for a unique portion of the variance beyond that accounted by subjective perceptions of disease severity, demographic, and objective biological markers of disease severity. Poorer psychological adjustment of caregivers as well as communication patterns among children were associated with ER use frequency after controlling for objective disease severity variables and demographic factors. Child social adjustment, specifically friendship quality, accounted for variance in children's use of the ER beyond that accounted for by social class and objective markers of disease severity. CONCLUSIONS Support is provided for the notion that ER use for children with SCD may be independent of disease severity and predicted by caregivers' psychological adjustment and children's peer adjustment.