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CHOIR’s health outcomes and health services research examines the underlying causes of poor health outcomes and health disparities, and identifies opportunities to promote equity in access to and the delivery of pediatric care.
This research includes examining the causes of poor birth outcomes in traditionally underserved and vulnerable populations, developing diagnostic tools and interventions for children with special needs, developing quality-of-care measures for hospitals, and applying measurement concepts such as comparative effectiveness research.
Health Outcomes Research Projects at CHOIR include:
Access to Care for Children with Special Needs
Children with special health care needs (CSHCN) are a vulnerable population - they require many health care services. Studies have shown that CSHCN often do not have adequate insurance coverage and face difficulties accessing needed care and services. This three-phase study collects survey data on this population, focusing on difficulties that they have experienced in health care and how their conditions impact their lives. The study uses national data collected by the CDC, interviews with parents and caretakers, and data from a survey of 250 random parents of CSHCN.
Among published results is the finding that caregivers of CSHCN were more likely to receive preventive guidance and health screening than were caregivers of children without special health care needs, although there are clear gaps in the delivery of preventive health services for CSHCN. This study identifies areas for improvement in the delivery of preventive health services for all children.
Results from this study also show that continuous health insurance coverage provides protection from financial burden and hardship for families of CSHCN in all income groups. However, many poor and low-income families continue to experience work loss and financial problems despite insurance coverage. Hence, health insurance should not be viewed as a solution in itself, but instead as one element of a comprehensive strategy to provide financial safety for families with CSHCN.
Principal Investigator: Alex Chen
Reducing Non-Urgent Emergency Room Visits
Using community-participatory research methodologies, a consortium of emergency medicine and community healthcare providers are working to identify interventions that might be used to reduce pediatric disparities associated with non-urgent use of emergency department services. CHLA’s administrative and clinical data, as well as survey and qualitative data are being collected and analyzed, with the goal being to develop, implement, and evaluate new interventions intended to increase use/access to pediatric primary care and preventive services delivered in community settings.
Principal Investigator: Michele D. Kipke
Barriers to Care in Sickle Cell Disease
Previous research suggests that access to quality medical care is a major barrier to improvement of survival in patients with sickle cell disease (SCD). In particular, patients with SCD visit emergency departments (ED) in rates leading to a significant health system burden. However, up to this point, limited comprehensive evaluations of utilization patterns have been studied, and most data have not been able to connect visits to patients across facilities.
This retrospective cohort study employed 2007 data from the California Office of Statewide Health Planning and Development. Data included all inpatient and ED discharges from all non-federal California hospitals, and identifiers connected each visit to an individual patient, across all facilities in the state. The long-term goal of this project is to improve the quality of care delivered to patients with SCD, particularly adolescent patients who will soon transition from pediatric to adult healthcare providers. Ultimately, findings from this study can be disseminated to key policy makers, community healthcare providers and systems of care in order to optimize the care and health of this population.
Principal Investigator: Julie Wolfson
Racial and Ethnic Health Care Disparities in the PICU
It is important to explore the prevalence of racial and ethnic disparities in health care and determine factors that create these discrepancies. The literature on this subject is growing, but still lacking in pediatrics, especially critical care. By exposing the difference and identifying factors that can be controlled, we may be able to intervene and create more equitable health care for all racial and ethnic groups in the United States. We must first ask the question, “Are there racial and ethnic disparities in health care in the pediatric intensive care unit?”
This study seeks to enhance physician/parent communications among non-English speaking families with a child that has been admitted to the CHLA pediatric intensive care unit. The ultimate goal is to address language barriers that might ultimately help to improve health outcomes within pediatric populations.
Principal Investigator: David Epstein
Measuring Quality of Primary Care for Complex Pediatric Patients
This project is aimed at improving the quality of primary care for complex pediatric patients by developing a set of comprehensive and multi-dimensional quality assessment tools. There are growing concerns that traditional models of care may not be effective for children with complex medical conditions, who are often managed by multiple providers, including generalists, specialists, school healthcare personnel, and therapists. The chronic and complex nature of these conditions, coupled with fragmented interaction and communication across multiple providers, can lead to inconsistent and poorly managed care.
The "medical home model," defined by the American Academy of Pediatrics as accessible, continuous, comprehensive, family-centered, coordinated, compassionate, culturally-effective care, has been adopted by the pediatric community as a promising primary care model for children with complex conditions. This project, in collaboration with renowned experts and pioneers in quality of care research (Drs. Mangione-Smith and Brook), will develop a comprehensive set of medical home driven quality of care measures for the healthcare and management of complex pediatric patients. Principal
Investigator: Alex Chen
Establishing an Ethical Framework for Critical Care Genetics
The study examines the ethical aspects of use of genetic data in the critical care environment. Use of genetic material in the intensive care unit (ICU) setting is increasingly common, however it is unclear whether those providing consent, such as family members or other surrogate decision makers (SDM), fully understand the risks, benefits, and ethical and legal considerations of collection of genetic data.
This study will use focus groups, in-depth interviews, and surveys to gain insight into the attitudes and concerns that family members hold regarding genetic technology as well as how they approach making difficult and complex decisions, which are common in the ICU. Findings from the study will be used to determine whether patient and SDM perceptions about the potential uses and nature of genetic data may hinder collection of genetic data in ICUs for research purposes. This project is a collaboration of Washington University in St. Louis, Children's Hospital Los Angeles, University of Texas Southwestern Medical Center, and Center for Survey Research in Massachusetts.
Site Principal Investigator: Ellen Iverson
Tummy Troubles Study
This research is investigating the genetic associations between signaling system variation and gastrointestinal dysfunction in children with conditions with autism spectrum disorders (ASDs). The study combines modern genetic, biological and high quality clinical characterization data of a group of ASD patients who have co-morbid gastrointestinal dysfunction. The research will provide rich characterization data on gastrointestinal dysfunction in ASD, describing a clinical population that is not well understood in ASD diagnosis and treatment. This study is a collaboration of the Zilkha Neurogenetic Institute, Vanderbilt University and the Gastroenterology Department at Children's Hospital Los Angeles, and is funded by the National Institutes of Health.
Site Principal Investigator: Michele D. Kipke
Twin-Twin Transfusion Syndrome Study
Twin-Twin Transfusion Syndrome develops in monochorionic twins from unbalanced sharing of blood through vascular communications in the common placenta. This observational retrospective cohort study will examine the effects of risk factors such as gestational age at birth and time of procedure, and birth weight on the neurodevelopmental outcomes of these twins at 24 months of age; assess cognitive, receptive/expressive language, fine/gross motor, socio-emotional, and adaptive skills with standardized scores; and ascertain neurodevelopmental impairment with standardized neurodevelopmental examinations. Environmental variables such as parental demographic factors will be analyzed to assess the contributions to donor and recipient group variability.
Principal Investigator: Douglas Vanderbilt
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