The Importance of Demographic Factors and Executive Function on the Quality of Life of Children and Adolescents with Sickle Cell Disease

Sickle cell disease is one of the most common genetic blood disorders affecting children in America today. This study examined the importance of demographic factors and executive function on the quality of life of children and adolescents with sickle cell disease (SCD). The study consisted of a sample of 30 participants that were recruited from online sickle cell support groups via the internet. The participants were the primary caregivers of children and adolescents diagnosed with SCD. The participants completed a demographic questionnaire, along with the Behavior Rating Inventory of Executive Function (BRIEF) and the Pediatric Quality of Life Inventory (PedsQL). Analyses were then performed on the independent variables (demographic factors and executive function) and the dependent variable (quality of life). Using correlations and regressions, the study tested for relationships between the following variables: executive function and quality of life, metacognition and school functioning, behavior regulation and psychosocial health, annual income and quality of life, parental stressors and quality of life, parental stressors and emotional functioning, living arrangements and quality of life, and siblings and quality of life.;The findings revealed that executive function and demographic factors contribute significantly to the prediction of quality of life. The results also indicated that specific executive dysfunctions have a stronger connection with specific aspects of quality of life. This was evident in the relationships between metacognition and school functioning, behavior regulation and psychosocial health, and parental stressors and emotional functioning. Overall, the findings suggest that both executive function and demographic factors play an important part on the quality of life of children and adolescents with SCD. These data can be used to establish more relevant interventions based on identified demographic factors and executive dysfunctions.