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.

Informant discrepancy in perceptions of sickle cell disease severity.

Objectives: To evaluate whether informants (children, caregivers, and physicians) differ in their perceptions of chronic disease severity and the extent to which these differences can be explained by objective indices of disease severity, and adjustment of the caregiver.

Methods: Participants were 58 children and adolescents between the ages of 8 and 18 years diagnosed with sickle cell disease. Information on perceptions of disease severity, caregiver adjustment, and biological markers of disease severity was obtained at a routine clinic follow-up appointment.