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Health Services


Angela Prehn


Acute and chronic pain is a common hallmark of sickle cell disease (SCD) in children and adolescents, which can have a profound effect on their quality of life (QOL). However, this relationship is not well quantified. The purpose of this quantitative study was to examine the relationship between SCD pain burden and QOL among Black children ages 8â??17 in Mississippi with SCD. The secondary aim was to compare children and caregiver reports of SCD pain burden and QOL with SCD. The social ecological model was used to identify personal factors that influence SCD pain burden and QOL of children with SCD. Eighty-five children and caregiver pairs completed paper surveys on demographics, pain burden, and QOL. Hierarchical linear regression results indicated that increased child SCD pain burden was statistically associated with decreased child's QOL (P<.001; R².089, .026, .356). Children and caregivers rated overall QOL and pain burden similarly but were not in agreement regarding the physical functioning of children mean scores. Emotional, social, and school functioning of child's QOL were higher when rated by children then the caregiver (p=.003) These results can be used for positive social change to provide comprehensive interventions that can be implemented based on the reported daily functioning of children with SCD. Education materials about the impact of pain and disease management can be developed based upon the specific data collected in community health clinics. Additionally, the results can be used to influence SCD health policy by creating a systematic service that includes the perception of children with SCD as part of their healthcare management.