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

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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.

Parental information, motivation, and adherence behaviors among children with sickle cell disease.

BACKGROUND: Identification of psychosocial correlates of health care utilization has become an important strategy in improving clinical care. The objective of the study was to examine the fit of the Information-Motivation-Behavioral Skills (IMB) model, applied to health care utilization among children with sickle cell disease (SCD). PROCEDURE: Participants were parents of 150 children, ages 1-17 years, receiving care in a sickle cell center. Parents completed questionnaires assessing information, motivation, adherence behaviors, and other factors with respect to SCD management. Data regarding health care utilization in the previous 12 months were obtained from parent report and electronic medical records. Stepwise multiple regression analysis was conducted to determine associations between IMB factors and health care use. RESULTS: Parents rated highly in the domains of information, motivation, and adherence behaviors for managing their child's SCD. Children of parents reporting higher satisfaction with social supports had higher odds (OR 1.49, 95% CI 1.03-2.15) of two or more routine hematology visits in the previous 12 months. Neither information nor adherence behavior was associated with urgent or routine care use. Among other variables measured, high parental illness-related stress and child health status reported as fair/poor were the strongest predictors of urgent care use while private insurance type was the strongest predictor of routine care use. CONCLUSIONS: Among IMB factors, social support was associated with routine health care utilization. Social support and parental illness-related stress may serve as important, modifiable targets in interventions to allocate needed resources to families and reduce unnecessary medical 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.