Hospital Use and Mortality in Transition-Aged Patients With Sickle Cell Disease.

OBJECTIVES: Childhood mortality in sickle cell disease (SCD) has decreased, but the transition period is associated with poor outcomes and higher mortality rates. We analyzed recent US hospitalizations and mortality trends in the transition-aged population and evaluated for differences between patients with and without SCD. METHODS: Nationwide Inpatient Sample database was used to analyze hospitalizations among individuals aged 16 to 24 years from 2003 to 2017. Diagnoses were coded by using International Classification of Diseases, Ninth Revision, Clinical Modification and International Classification of Diseases, 10th Revision, Clinical Modification. We performed bivariate analyses to assess associations between sociodemographic characteristics and SCD hospitalizations, joinpoint regression analysis to describe mortality rate trends in SCD hospitalizations, and adjusted survey logistic regression to assess associations between patient characteristics and in-hospital mortality among transition-aged SCD and non-SCD-related hospitalizations. RESULTS: There were 37 344 532 hospital encounters of patients aged 16 to 24 years during 2003-2017; both SCD and non-SCD hospitalizations increased with age. Female patients accounted for 78% of non-SCD and 54.9% of SCD hospitalizations. Although there was a +3.2% average annual percent change in SCD hospitalizations, total SCD in-hospital mortality rates did not have a statistically significant increase in average annual percent change over the study period. Patients with SCD aged 19 to 21 and 22 to 24 were more likely to suffer in-hospital mortality than those aged 16 to 18 (odds ratio = 2.09 and 2.71, respectively); the increased odds in mortality by age were not seen in our non-SCD population. CONCLUSIONS: Transition-aged hospitalizations increase with age, but SCD hospitalizations have disparate age-related mortality rates. Hospital-based comprehensive care models are vital to address the persistent burden of early adulthood mortality in SCD.

Healthcare utilization and expenditures for low income children with sickle cell disease.

BACKGROUND: While multiple studies have examined the healthcare burden of sickle cell disease (SCD) in adults, few have specifically focused on healthcare utilization and expenditures in children. The objective of this study was to characterize the healthcare utilization and costs associated with the care of low-income children with SCD in comparison to other children of similar socioeconomic status. PROCEDURE: For the study period, 2004-2007, we conducted a retrospective, cross-sectional descriptive analysis of administrative claims data from a managed care plan exclusively serving low-income children with Medicaid and the State Children's Health Insurance Plan (SCHIP). Patient demographics, continuity of insurance coverage, healthcare utilization, and expenditures were collected for all children enrolled with SCD and the general population within the health plan for comparison. RESULTS: On average, 27% of members with SCD required inpatient hospitalization and 39% utilized emergency care in a given calendar year. Both values were significantly higher than those of the general health plan population (P < 0.0001). Across the study period, 63% of members with SCD averaged one well child check per year and 10% had a minimum of one outpatient visit per year to a hematologist for comprehensive specialty care. CONCLUSIONS: Low-income children with SCD demonstrate significantly higher healthcare utilization for inpatient care, emergency center care, and home health care compared to children with similar socio-demographic characteristics. A substantial proportion of children with SCD may fail to meet minimum guidelines for outpatient primary and hematology comprehensive care.

A critical assessment of transcranial doppler screening rates in a large pediatric sickle cell center: opportunities to improve healthcare quality.

BACKGROUND: Transcranial Doppler ultrasound (TCD) has been demonstrated to be a powerful predictor of stroke risk due to sickle cell disease (SCD) in pediatric populations. Little is known about how this healthcare innovation has disseminated into preventive care for SCD. The objective of this study was to determine TCD screening rates and modifiable patient barriers in children with SCD. PROCEDURE: We retrospectively assessed the screening of 207 children with SCD at the Texas Children's Sickle Cell Center over a 3-year period (2004-2006). Demographics, adherence to comprehensive care visits, severity of disease, and distance from the sickle cell center were obtained from computerized medical record databases. Screenings cancelled or missed by patients were extracted from a computerized order entry system. RESULTS: The average yearly screening rate for eligible patients was 45%. The average yearly cancellation rate by patients was 20%. Patient with private insurance were three times more likely to be compliant with ordered screenings than patients with Medicaid (P = 0.0077). Patients adherent to hematology comprehensive care visits more likely underwent ordered screenings than those who were not (P = 0.0386). When given at least one opportunity per year, providers, on average, ordered TCD screening 74% of the time when it was indicated. CONCLUSIONS: Despite evidence that routine screening to assess stroke risk is vital to the preventive care of SCD, implementation of this healthcare technology may be slow to disseminate due to patient and provider related factors.