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.