Care Coordination for Children With Sickle Cell Disease

Abstract

Care coordination (CC), a core element of the medical home, has the potential to reduce fragmented care and improve patient experience for children with sickle cell disease (SCD). This study aimed to (1) assess CC for pediatric SCD and (2) determine its association with acute care utilization-emergency department encounters and hospitalizations. It was hypothesized that CC would reduce acute care utilization. A longitudinal study of 101 children with SCD was conducted. Parents completed a survey instrument on enrollment. Utilization chart review was conducted 9 months post survey. Outcome variables were emergency department encounters and hospitalizations. Independent variables were parent-reported CC, satisfaction with communication between healthcare providers, and satisfaction with communication between healthcare providers and non-medical providers (e.g., schools, child care centers). Multivariate negative binomial regression was conducted to assess associations between CC and acute care utilization. Data were collected in 2011-2013 and analyzed in 2015. One third of children had emergency department encounters and 30% had hospitalizations. At enrollment, 25% of parents reported receiving CC help and 20% reported need for extra CC. Most parents were satisfied with communication between physicians but only two thirds were satisfied with communication between their healthcare providers and non-medical providers. No significant associations were found between CC measures and acute care utilization. Although parents report multiple CC deficiencies, no associations were found between CC and acute care utilization. Population-based studies are warranted to more definitively determine the association between CC and acute care utilization for children with SCD.