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Care Coordination for Children With Sickle Cell Disease: A Longitudinal Study of Parent Perspectives and Acute Care Utilization.

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.

SUBMITTER: Rattler TL

PROVIDER: S-EPMC4916339 | biostudies-other | 2016 Jul

REPOSITORIES: biostudies-other

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Project description:BackgroundThe costs associated with the treatment of sickle cell disease (SCD) are understudied in low and middle-income countries (LMIC). We evaluated the cost of treating SCD-related acute complications and the potential cost-savings of hydroxyurea in a specialized hematology center in Brazil.MethodsThe costs (US dollars) of emergency department (ED) and hospitalizations from SCD-related complications between 01.01.2018 and 06.30.2018 were ascertained using absorption and micro-costing approaches. The reasons for acute hospital visits were grouped as: 1) vaso-occlusive (VOC) pain, 2) infection, 3) anemia exacerbation, and 4) chronic organ damage complications. Hydroxyurea adherence was estimated by medication possession ratio (MPR) during the study period.ResultsIn total, 1144 patients, median age 17 years (range 0-70), 903 (78.9%) with HbSS/HbSβ0-thalassemia, 441 (38.5%) prescribed hydroxyurea, visited the ED, of whom 381 (33%) were admitted. VOC accounted for 64% of all ED visits and 60% of all admissions. Anemia exacerbation was the most expensive reason for ED visit ($321.87/visit), while chronic organ damage carried the highest admission cost ($2176.40/visit). Compared with other genotypes, individuals with HbSS/HbSβ0-thalassemia were admitted more often (79% versus 21%, p < 0.0001), and their admission costs were higher ($1677.18 versus $1224.47/visit, p = 0.0001). Antibiotics and analgesics accounted for 43% and 42% of the total ED costs, respectively, while housing accounted for 46% of the total admission costs. Costs of ED visits not resulting in admissions were lower among HbSS/HbSβ0-thalassemia individuals with hydroxyurea MPR ≥65% compared with visits by patients with MPR <65% ($98.16/visit versus $182.46/visit, p = 0.0007). No difference in admission costs were observed relative to hydroxyurea use.DiscussionIn a LMIC hematology-specialized center, VOCs accounted for most acute visits from patients with SCD, but costs were highest due to anemia exacerbation. Analgesics, antibiotics, and housing drove most expenses. Hydroxyurea may reduce ED costs among individuals with HbSS/HbSβ0-thalassemia but is dependent on adherence level.

Dataset Information

Care Coordination for Children With Sickle Cell Disease: A Longitudinal Study of Parent Perspectives and Acute Care Utilization.

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