Is exercise associated with health-related quality of life in children and adolescents with sickle cell disease using self- and parent proxy-reports?

PURPOSE: This study examined associations between demographics, disease severity indicators, levels of weekly mild, moderate and strenuous intensity exercise and self-reports and parental proxy-reports of health-related quality of life (HRQL) in children and adolescents with sickle cell disease (SCD). Concordance between parental and child/adolescent reports was also examined. METHODS: This cross-sectional study adopted an interdependent-groups, correlational design. One-hundred and six children and ninety-six adolescents with SCD and one of their parents independently completed the Pediatric Quality of Life Inventory and the Godin-Leisure-Time Exercise Questionnaire. Parents also reported demographics and disease severity indicators. RESULTS: Parents underestimated children's/adolescents' HRQL, although the effect was small, but reports of exercise were generally concordant. Fewer days missed from school and higher levels of moderate exercise were associated with better HRQL reported by children and their parent. Fewer days missed from school and fewer vaso-occlusive crises were associated with adolescent and parental reports of better HRQL. Higher levels of strenuous exercise were also associated with parental reports of better HRQL in adolescents. CONCLUSION: Disease severity indicators are associated with self-reports and parental reports of better child and adolescent HRQL but moderate intensity exercise also plays a role for children. Clinical practice should promote daily exercise and help parents understand that balance is needed between taking some precautions but not being overprotective so that exercise levels are insufficient and HRQL is impacted.