OBJECTIVE - To provide accurate data on health-related quality of life (HRQL), there must be a valid tool to measure this outcome. The objective of this study was to determine the validity of the Child Health Questionnaire (CHQ) as a measure of HRQL in sickle cell disease (SCD) by examining the relationship between HRQL and disease severity.
METHODS - This was a cross-sectional study of children conducted at two urban, hospital-based clinics. The study participants were children with SCD ages 5 to 18 years who presented for a routine visit to the comprehensive SCD clinic. The main outcome was HRQL, as measured by the CHQ-Parent Form 28 (PF28). A t test was used to compare HRQL between those with mild and severe disease.
RESULTS - Parents/caretakers of 95 children completed the CHQ-PF28. Children with mild SCD had a significantly better HRQL, as evidenced by a higher mean physical summary score (39.1), than those with severe disease (28.0) (difference=11.1, 95% confidence interval 5.03-18.11). There was no significant difference in psychosocial summary scores between groups.
CONCLUSIONS - The CHQ is a valid tool to assess HRQL in children with SCD and could serve as an important adjunct to determine the effect of SCD on the lives of children.