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.