Jean L. Raphael

Racial and Ethnic Disparities in Indicators of a Primary Care Medical Home for Children

OBJECTIVE Racial/ethnic disparities in access to care across a broad range of health services have been well established. In adults, having a medical home has been shown to reduce disparities. The objective of this study was to assess the extent to which children of different race/ethnicities receive primary care consistent with a medical home. METHODS We conducted a secondary analysis of 84 101 children, ages 0-17, from the 2003-2004 National Survey of Childrens Health, a nationwide household survey. The primary independent variable was race/ethnicity of the child. The main dependent variable was a medical home as defined by the American Academy of Pediatrics. Multiple logistic regression was conducted to investigate associations between race/ethnicity and having a medical home. RESULTS The odds of having a medical home were lower for non-Hispanic black (odds ratio [OR] 0.76, 95% confidence interval [95% CI] 0.69-0.83), Hispanic (OR 0.80, 95% CI 0.72-0.89), and other (OR 0.77, 95% CI 0.69-0.87) children compared with non-Hispanic white children after adjusting for sociodemographic variables. Specific components of a medical home for which minority children had a lower odds (P < .01) of having compared with white children included having a personal provider, a provider who always/usually spent enough time with them, and a provider who always/usually communicated well. CONCLUSIONS Minority children experienced multiple disparities compared with white children in having a medical home. Study of individual medical home components has the potential to identify specific areas to improve disparities.

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

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.

Association of medical home care and disparities in emergency care utilization among children with special health care needs.

OBJECTIVE The aim of this study was to determine whether having a medical home is associated with a reduction of racial/ethnic disparities in emergency care utilization by children with special health care needs (CSHCN). METHODS We conducted a secondary analysis of 35 301 children, aged 0 to 17, from the 2005-2006 National Survey of Children with Special Health Care Needs. The primary dependent variable was emergency care utilization, defined as 1 or more emergency care encounters in the last 12 months. The primary independent variables were race/ethnicity and type of care (medical home, usual source of care, no medical home/no usual source of care). Multiple logistic regression was conducted to investigate associations between race/ethnicity, type of care, and emergency care utilization. RESULTS Analysis of type of care and its interactions with race/ethnicity showed that non-Hispanic black children with a medical home had higher odds (odds ratio [OR] 1.26, 95% confidence interval [CI] 1.03-1.54) of emergency care utilization compared with non-Hispanic white children with a medical home. The odds of having 1 or more emergency care visits were higher for non-Hispanic black children (OR 1.38, 95% CI 1.22-1.56) compared with non-Hispanic white children after controlling for sociodemographic variables. Having a medical home was associated with lower odds of emergency care utilization (OR 0.81, 95% CI 0.72-0.90) compared with having neither a medical home nor a usual source of care. CONCLUSIONS Emergency care utilization for CSHCN differed significantly according to race/ethnicity. Having a medical home may be associated with a reduction in disparities in this fragile population.

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

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.

The Role of Lay Health Workers in Pediatric Chronic Disease: A Systematic Review

BACKGROUND Children with chronic diseases represent a high-cost and resource-intensive population of children. With continued gaps in chronic disease management and persistent fragmentation in the health care system, stakeholders are seeking new strategies to address the needs of these children. OBJECTIVE We sought to systematically assess the effectiveness of lay health worker interventions in improving health care utilization, symptom management, and family psychosocial outcomes for children with chronic conditions. DATA SOURCE PubMed, PsycINFO, and Web of Science (January 1961 to February 2013). STUDY ELIGIBILITY CRITERIA, PARTICIPANTS, AND INTERVENTIONS We developed a strategy to search citations to identify relevant articles. Search terms included randomized controlled trial (RCT), lay worker, parent mentor, peer mentor, peer educator, community health workers, community health aids, patient advocate, patient facilitator, patient liaison, promotoras(es), care ambassadors, patient navigator, and nonprofessional. Additional studies were identified by searching the reference lists of retrieved articles and contacting clinical experts. RCTs of lay health worker interventions for children with chronic conditions were included. Studies were restricted to those concentrated on children 0-18 years of age with chronic illnesses. STUDY APPRAISAL AND SYNTHESIS METHODS Abstracts were independently screened by 2 reviewers. Articles with relevant abstracts underwent full text review and were evaluated for inclusion criteria. A structured tool was used to abstract data from selected articles. Because of the heterogeneous interventions and outcomes, we did not conduct a meta-analysis. RESULTS The search yielded 736 unique articles, of which 17 met inclusion criteria. All interventions focused on specific conditions: asthma, type I diabetes, obesity, and failure to thrive. Interventions were heterogeneous in frequency, mode, and duration of interactions between lay health workers and subjects. Several interventions were multifaceted, including both one-on-one and group interactions. Improved outcomes most commonly reported were reduced urgent care use, decreases in symptoms, fewer missed work and school days, and increased parental quality of life. One study demonstrated that lay health worker interventions were cost-effective. CONCLUSIONS Lay health workers interventions in children with chronic conditions may lead to modest improvements in urgent care use, symptoms, and parental psychosocial outcomes. Such interventions may also be cost-effective. Future research should focus on interventions targeted toward other chronic conditions such as sickle cell disease or cystic fibrosis and medically complex children whose conditions are noncategorical.

Parenting stress in US families: implications for paediatric healthcare utilization

OBJECTIVE According to family stress models, parental responses to stress disrupt interactions between parent and child and may lead to parental inability to seek timely medical care for their child. The objective of this study was to quantitatively assess the relationship between high parenting stress and child healthcare utilization. METHODS We used the 2003-2004 National Survey of Childrens Health to determine the prevalence of parenting stress in US families and associated socio-demographic variables. We used weighted logistic regression to investigate associations between parenting stress and healthcare utilization, controlling for other parental psychosocial and socio-demographic variables. The primary independent variables were parenting stress, parental mental health, parental coping and social support. The main dependent variables were emergency care, sick visits to primary care and preventive care in the past 12 months. RESULTS Nationally, 13% of children lived in households with at least one parent experiencing high parenting stress. Socio-demographic variables associated with the highest odds of parenting stress included Black race, special needs status and non-English primary language. Parents with high parenting stress had a higher odds (adjusted odds ratio 1.24, 95% confidence interval 1.10-1.41) of seeking emergency care for their children compared with parents with low parenting stress, controlling for other parental psychosocial factors and socio-demographic variables. CONCLUSIONS Having a parent who is experiencing high parenting stress is associated with greater utilization of paediatric emergency care. Interventions targeted at parenting stress may provide families with needed support and reduce unnecessary emergency care utilization.

Socioeconomic Status and In-Hospital Pediatric Mortality

OBJECTIVE: Socioeconomic status (SES) is inversely related to pediatric mortality in the community. However, it is unknown if this association exists for in-hospital pediatric mortality. Our objective was to determine the association of SES with in-hospital pediatric mortality among children’s hospitals and to compare observed mortality with expected mortality generated from national all-hospital inpatient data. METHODS: This is a retrospective cohort study from 2009 to 2010 of all 1 053 101 hospitalizations at 42 tertiary care, freestanding children’s hospitals. The main exposure was SES, determined by the median annual household income for the patient’s ZIP code. The main outcome measure was death during the admission. Primary outcomes of interest were stratified by income and diagnosis-based service lines. Observed-to-expected mortality ratios were created, and trends across quartiles of SES were examined. RESULTS: Death occurred in 8950 (0.84%) of the hospitalizations. Overall, mortality rates were associated with SES (P < .0001) and followed an inverse linear association (P < .0001). Similarly, observed-to-expected mortality was associated with SES in an inverse association (P = .014). However, mortality overall was less than expected for all income quartiles (P < .05). The association of SES and mortality varied by service line; only 3 service lines (cardiac, gastrointestinal, and neonatal) demonstrated an inverse association between SES and observed-to-expected mortality. CONCLUSIONS: Within children’s hospitals, SES is inversely associated with in-hospital mortality, but is lower than expected for even the lowest SES quartile. The association between SES and mortality varies by service line. Multifaceted interventions initiated in the inpatient setting could potentially ameliorate SES disparities in in-hospital pediatric mortality.

Treatment of uncomplicated vaso-occlusive crises in children with sickle cell disease in a day hospital

Day hospital management for patients with sickle cell disease experiencing uncomplicated vaso‐occlusive pain crises has been described in adult populations as an alternative care delivery system. The objective of this study was to characterize and descriptively assess the benefits of a day hospital exclusively designed for children.

Oral iron chelation and the treatment of iron overload in a pediatric hematology center

Recent advances have led to the development of oral iron chelators, which have changed clinical practice. The objective of this study was to descriptively assess the use of one such agent, deferasirox, as standard of care treatment in a large pediatric hematology center.

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

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.