Association of care in a medical home and health care utilization among children with sickle cell disease.

OBJECTIVE: Sickle cell disease (SCD) is marked by high utilization of medical services. The aim of this study was to determine whether having a patient-centered medical home (PCMH) is associated with a reduction in emergency care (ED) utilization or hospitalizations among children with SCD. METHODS: We collected and analyzed data from parents of 150 children, ages 1 to 17 years, who received care within a large children's hospital. The primary dependent variables were rates of parent-reported ED visits and hospitalizations. The principal independent variable was parent-reported experience with an overall PCMH or its four individual components (regular provider, comprehensive care, family-centered care, and coordinated care). Multivariate negative binomial regression, yielding incident rate ratios (IRR), was used for analysis. RESULTS: Children who received comprehensive care had half the rate of ED visits (IRR 0.51, 95% confidence interval, 0.33-0.78) and nearly half the rate of hospitalizations (IRR 0.56, 95% confidence interval, 0.33-0.93) compared to children without comprehensive care. No other component of the PCMH was significantly associated with ED visits or hospitalizations. Children reported to have excellent/very good/good health status had lower odds of ED visits and hospitalizations compared to those reported to be in fair/poor condition. CONCLUSIONS: Children with SCD reported to experience comprehensive care had lower rates of ED encounters and hospitalizations after controlling for demographics and health status. The overall findings highlight that the provision of comprehensive care--having a usual source of care and no problems with referrals--may provide a strategy for improving pediatric SCD care.

The medical home experience among children with sickle cell disease.

BACKGROUND: While a large body of research documents acute care services for children with sickle cell disease (SCD), little is known about the primary care experiences of this population. The goal of this study was to determine to what extent children with SCD experienced care consistent with a patient-centered medical home (PCMH). PROCEDURE: We collected and analyzed data from 150 children, ages 1-17 years, who received care within a large children's hospital. The primary dependent variable was access to a PCMH or its four individual components (regular provider, comprehensive care, family-centered care, and coordinated care) as determined by parental report. Multivariate logistic regression was conducted to investigate associations between socio-demographic variables and having access to a PCMH. RESULTS: Only 11% (16/150) of children qualified as having a PCMH, achieving the required thresholds in all four components. Approximately half of children had access to two or fewer components. Over 90% of children were reported to have a personal provider. Two-thirds of children had access to comprehensive care. Almost 60% of children were reported to receive family-centered care. Only 20% of children had access to coordinated care. No consistent associations were found between socio-demographic variables and having access to a PCMH or its individual components. CONCLUSIONS: Within our study sample, children with SCD experienced multiple deficiencies in having access to a PCMH, particularly with respect to care coordination. However, further studies with larger samples are needed to determine associations between socio-demographic variables and having a PCMH.

High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease.

BACKGROUND: Vaso-occlusive crises (VOCs) contribute to frequent hospitalizations among children with sickle cell disease (SCD). The objective of this study was to identify factors associated with high resource utilization during hospitalizations for VOC. PROCEDURE: We analyzed pediatric discharges 0-18 years of age with a primary diagnosis of SCD with crisis from the 2006 Kids' Inpatient Database, a nationally representative sample of pediatric hospital discharges. High resource hospitalizations were defined as those in the highest decile for total charges. We conducted sample-weighted regression analyses to determine associations between independent variables (patient demographics, hospital characteristics, illness severity) and high resource use. RESULTS: There were 9,893 (0.371%) discharges for children with VOCs. Median total hospitalization charges were $10,691. In multivariate analysis, children 15-18 years of age (odds ratio [OR] 3.39, 95% confidence interval [CI] 2.54-4.53), 10-14 years of age (OR 2.72, 95% CI 2.07-3.59), and 5-9 years of age (OR 1.74, 95% CI 1.30-2.34) had higher odds of high resource hospitalizations compared to children 0-4 years of age. Care in a children's hospital had three times the odds of high resource use compared to care in a general hospital. Discharges with secondary diagnoses including pneumonia (OR 2.46, 95% CI 1.96-3.09) and constipation (OR 1.78, 95% CI 1.31-2.40) were also associated with high resource use. CONCLUSIONS: Older age and secondary diagnoses were associated with high resource use during VOC hospitalizations. These findings suggest the need to improve adherence to comprehensive care among older children to prevent VOCs and standardize protocols to manage VOC complications.

Assessment of cardiac iron by MRI susceptometry and R2* in patients with thalassemia.

A magnetic resonance imaging cardiac magnetic susceptometry (MRI-CS) technique for assessing cardiac tissue iron concentration based on phase mapping was developed. Normal control subjects (n=9) and thalassemia patients (n=13) receiving long-term blood transfusion therapy underwent MRI-CS and MRI measurements of the cardiac relaxation rate R2*. Using MRI-CS, subepicardium and subendocardium iron concentrations were quantified exploiting the hemosiderin/ferritin iron specific magnetic susceptibility. The average of subepicardium and subendocardium iron concentrations and R2* of the septum were found to be strongly correlated (r=0.96, P<.0001), and linear regression analysis yielded CIC (microg Fe/g(wet tissue))=(6.4+/-0.4).R2* (septum) (s(-1)) - (120+/-40). The results demonstrated that septal R2* indeed measures cardiac iron level.

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.

Day hospital versus inpatient management of uncomplicated vaso-occlusive crises in children with sickle cell disease.

BACKGROUND: Day hospital (DH) management for patients with sickle cell disease (SCD) experiencing uncomplicated vaso-occlusive pain crises has been utilized as an alternative care delivery system to inpatient hospitalization. The objective of this study was to determine whether DH management results in shorter length of stay compared to inpatient care. PROCEDURE: We conducted a retrospective cohort study with 35 DH admissions and 35 inpatient admissions for children with SCD presenting with uncomplicated vaso-occlusive crises (VOCs). A DH admission was defined as a minimum of two consecutive days of aggressive pain management as an outpatient, including intravenous hydration and analgesics, supported by home treatment over night with oral analgesic and anti-inflammatory agents. We gathered data on demographics, pain scores, length of stay, admission charges, and needs for persistent care. RESULTS: DH care resulted in a 39% reduction of the average length of stay compared to inpatient admissions. Multivariate linear regression demonstrated that the location of patient care for VOCs was a significant predictor of length of stay (P < 0.0006) after controlling for patient characteristics, severity of illness, and disease history. CONCLUSIONS: We conclude that a dedicated DH facility has the potential to provide efficient and timely management of uncomplicated VOCs through reduction of length of stay. This delivery care system may be particularly relevant for children who are significantly impacted by inpatient hospitalization.