Health-related quality of life in children with sickle cell disease using the child health questionnaire.

INTRODUCTION: This study sought to determine if changes in parent-reported health-related quality of life (HRQOL) in children with sickle cell disease (SCD-SS) occurred after participation in a nutritional supplementation study and to compare HRQOL responses with normative scores from non-White children.

METHOD: Parents of children with SCD-SS between the ages of 5 and 13 years completed the Child Health Questionnaire (CHQ-PF50) at baseline and at 12 months.

RESULTS: For the 47 children (8.6 ± 2.4 yrs, 43% female), baseline Child Health Questionnaire scale scores were significantly lower than normative scale scores for parental emotional impact, general health, and overall physical health, but they were higher for mental health. After the nutritional supplementation study, overall physical health and parental emotional impact improved to normative levels. Furthermore, physical role functioning significantly improved.

DISCUSSION: Participation in a nutritional study had a positive impact on parent-reported HRQOL physical scores in children with SCD-SS. More research is necessary to develop care providers' awareness and adequate HRQOL interventions for this population.