Correlates of pain-rating concordance for adolescents with sickle cell disease and their caregivers.

OBJECTIVES: As sickle cell pain in children and adolescents with sickle cell disease (SCD) is managed primarily at home, understanding convergence of caregiver and youth pain reports may contribute to improvements in home pain management. The goal of this study was to examine concordance in pain ratings for a sample of 53 adolescents with SCD and their caregivers and to assess sociodemographic and psychosocial factors associated with concordance.
METHODS: Adolescents and caregivers completed a paper-and-pencil retrospective pain questionnaire and also SCD knowledge and disease management self-efficacy questionnaires. In addition, adolescents completed a SCD pain-coping questionnaire and a performance-based measure of cognitive functioning.
RESULTS: Although Pearson correlations supported convergence across measures, intraclass correlation coefficients suggested only moderate consistency in pain ratings. Significant variation in interference with daily activities (caregivers higher) and pain descriptors (adolescents higher) was identified. Few correlates were supported; SCD knowledge and disease self-efficacy were identified in correlation analyses, but younger age, higher income, and increased adolescent disease self-efficacy were the strongest independent predictors of concordance in regression analyses. DISCUSSION: Efforts to improve home management of pain in SCD should incorporate programming designed to increase parent-child communication about pain and pain interference, confidence in disease management abilities, and improved knowledge of SCD and its care, particularly for families of older adolescents.